Latest messages for CancerCompass discussion http://www.cancercompass.com/message-board/message/all,1804,0.htm Sun, 19 May 2013 00:00:00 GMT Sun, 19 May 2013 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Did the antibiotic helpl? jan12257 Thu, 14 Mar 2013 00:00:00 GMT my husband was on Tarceva,when his dosage was upped from 100 too 150 he went down hill fast. his rash was very bad and the doctor asked to take photos because he had not seen it this bad. when our doc went on vacation  we had to see someone else and the 1st thing they said to us was hasn't he given you the available antibiotic for this.answer he hasn't even told us there is one. I do not recall the name of the antibiotic  but ask . seems like some doc are more concerned with photos for magazines than antibiotics they know about. daisyloo Thu, 14 Mar 2013 00:00:00 GMT We had to pay most of the first month of Tarceva but Medicare paid most of subsequent months. The first month was $4,000 and i think we paid most of that, then were in "the donut" CharR CharR Thu, 07 Mar 2013 00:00:00 GMT Deb, I will keep you in my prayers as well, and thank you.  Patty_64 Tue, 26 Feb 2013 00:00:00 GMT That story will make anyone with this kind of cancer feel good. Thanks and good luck to you. Jan jan12257 Tue, 26 Feb 2013 00:00:00 GMT ddiana:   Thanks,  that helps.  I am now on day 19 of my treatment, only side effect is occassional diarreaha and some itching. It may be working some as I can touch the spot on my skin under the nose,and it does not hurt, it was so sore in the  past I could not touch to bathe. My biggest problem now is eating, it has been 3 months since surgery and my mouth is still raw as it rubs when moving jaw. Tongue is still burned from radiation six months ago and I cannot control the thrush.  I had some Japanese products for radiation burn that  I was using last year,(they seemed to work then)  need to talk to the Doctor and see if I can get back on them while taking Tarceva.  After  10 1/2 hour surgery  my body is still weak. Nothing tastes good, I must force myself to eat and changing diet eliminating all the foods that I can no longer eat. On soft and liquid diet,  plans are to repair my mouth in 3 more months. Am also having a lot of pain in my  leg  where they took the flesh to cover the hole they left in my face when removing cancer.  At least, the pain is not  24/7 and not as intense as the pain of the cancer before surgery. I heard that Obama care will not pay for cancer care after 76 years old,  I will be 75 shortly so I am trying to read the bill.  Very hard reading but gives me something to do as I don't have much activity and am bored in this house all the time. Thanks for the experimental Tarceva for my skin cancer it is no cost to me, (don't know how long that will last) however  because of the distance to MDAnderson Cancer center the trip costs us $50.00 a day( made 3-4 trips a week for months). Hopefully the number of trips will go down.  Cancer is expensive to me even with good insurance (Medicare and Tricare) Oncologist tells me skin cancers next stop is often the lung. jan12257 Tue, 26 Feb 2013 00:00:00 GMT Please continue to take your Tarceva daily.  I have been on 150mg Tarceva for the past six (6) years and it is saving my life.  You must take it as prescribed, the same time daily.  The Tarceva is saving my life. I was given 2-3 years to live 10 years ago; 2 years of Chemo, 6 months of radiation, Iressa and then Tarceva for six years.  My stage 4 nsclc mestastisis has even shrunk a bit. You are in my prayers.   KimmieAnne Tue, 26 Feb 2013 00:00:00 GMT On Feb 25, 2013 6:11 PM Patty_64 wrote: My 80 year old father has been battling squamous small cell carcinoma since April of 2011. He's went through both chemotherapy and spot treatment radiation, after which he has been on tarceva ever since (about 1.5 years now). His tumors did decrease in size and he went into remission. Within the last 4 months he developed bone cancer on his left forearm. He received spot treatment radiation to these cells, which did decrease their size significantly. He was not allowed to take the tarceva during this 6 week period. The first MRI having great results, the oncologist had him taking tarceva every other day in order to diminish the rash that he gets from head to toe (itchy,small pustules that sometimes bleed). Recently, the MRI has shown a slight increase in the size of his tumors and so the tarceva frequency has increased to everyday again.  We are hopeful and do believe this drug has had a significant effect on my fathers very aggressive cancer. The cost of this drug in staggering. However, if you contact the drug manufacturer, you can apply for a program that will pay part if not all of the cost of this drug. Sometimes your insurance company will help you by sending you the forms. Otherwise, call the drug manufacturer directly or find them online. Hope this helps! God bless to you all...I hope Tarceva works as well for your father as it did for me.  I will add your dad to my prayers list.  I know I started doing that every other day thing to help my rash also and I did it on my own not doctors orders but hearing what happened when your dad did that I will be taking my Tarceva every single day.  God Bless.  deb ddiana Tue, 26 Feb 2013 00:00:00 GMT On Feb 16, 2013 2:04 AM jan12257 wrote: Anyone our there taking Tarceva now?Hi Jan12257,  Yes I am currently taking Tarceva I started it December of 2011 and was told I had months to live here we are in Feb of 2013 and the Tarceva has worked great shrunk all my spots, I do have a very bad rash problem but I try to keep that under control.  Ive been rx's doxycyc Hyc capsules at first 100 mgs but they made me so sick to my stomach that they reduced it to 50 mgs.  But yes Tarceva has extended my life way past what they originally thought would be my time.  I hope that it works as well for you. ddiana Tue, 26 Feb 2013 00:00:00 GMT My 80 year old father has been battling squamous small cell carcinoma since April of 2011. He's went through both chemotherapy and spot treatment radiation, after which he has been on tarceva ever since (about 1.5 years now). His tumors did decrease in size and he went into remission. Within the last 4 months he developed bone cancer on his left forearm. He received spot treatment radiation to these cells, which did decrease their size significantly. He was not allowed to take the tarceva during this 6 week period. The first MRI having great results, the oncologist had him taking tarceva every other day in order to diminish the rash that he gets from head to toe (itchy,small pustules that sometimes bleed). Recently, the MRI has shown a slight increase in the size of his tumors and so the tarceva frequency has increased to everyday again.  We are hopeful and do believe this drug has had a significant effect on my fathers very aggressive cancer. The cost of this drug in staggering. However, if you contact the drug manufacturer, you can apply for a program that will pay part if not all of the cost of this drug. Sometimes your insurance company will help you by sending you the forms. Otherwise, call the drug manufacturer directly or find them online. Hope this helps! God bless to you all... Patty_64 Mon, 25 Feb 2013 00:00:00 GMT Good Morning!   I am KimmieAnne and I have Stage 4 non small cell lung cancer and have been on Tarceva 150 mg for 6+ years now and it is saving my life. I was given 2-3 years to live.  I did two years of chemo, 6 months of radiation and then onto the Tarceva.  The side effects will go away.  I had diarrhea and a slight rash when I began taking Tarceva.  My oncologist feels that if a reaction is immediate, there is a great chance that the medication will work. I will keep your gramma in m prayers.  Tell her not to be afraid.   KimmieAnne Mon, 18 Feb 2013 00:00:00 GMT Hi Ernie,   I was nsclc3a at diagnosis 5 years ago, but have had surgery and a recurrence, but nothing now on scan. I don't know anything about Afatinib but it is from the same family of treatments as Tarceva (erlotinib) - witness the 'ib' endings. I ignore stories of resistance developing and live my life as if I will go on forever, while doing everything the oncologist tells me to do. I do hope your wife hasn't developed a resistance to Tarceva. What do I do differently post-diagnosis? I keep my weight stable; I sleep at least 8 hours a night and take naps whenever I feel tired; I have virtually stopped drinking any alcohol mostly because it has little appeal now; I meditate every day. Diet-wise I have done nothing differently from before, but I exercise regularly, ideally 4 days/week either the gym, jogging or 18 holes of golf. Or walking outside, preferably vigorously. I enjoy the grandchildren, travel, keep in touch with my friends, enjoy life, doing things with my husband and remaining as optimistic as possible. What else can one do?? I treat the little sores/pimples on my body with acne-treatment cream (Zindoclin 1%) and they disappear.   Hope it all works out for your wife and that she continues to do well on her medication. I am pleased she has your support and care and I wish you both all the best and a long and happy life.   Margaret     MargaretFT Sun, 17 Feb 2013 00:00:00 GMT On Feb 16, 2013 8:58 AM MargaretFT wrote: There are lots of reports here from Tarceva-users, including several by me. It'll be 4 years for me come April, at least 3 of them which I would not have had without Tarceva so I am very grateful for it. Of course I have side-effects (occasional pimples, once inside my mouth and down my throat which I treated by stopping the Tarceva for a few days while it healed; diarrhea frequently, tiredness) but worth it. In January I had to take anti-malarials for 4+ weeks as we were in Burma for over 3, and that taxed my system, but hey, I spent 3 weeks in Burma!! I lead my life the way I want to, deal with the side-effects and am grateful every day for the research that led to the development of this drug. Sure beats having lung cancer and a much more limited life and lifestyle. Does this answer your question?? Margaret FTThanks.  I am taking th Tarceva for skin cancer.  10 days now and I notice pain gone.  Maybe it will work for thwt squamous cell also,  it is a trial study. jan12257 Sun, 17 Feb 2013 00:00:00 GMT Dear Margaret FT So happy to hear you are doing so well and are enjoying life.  I am curious about what else are you doing?  Have you changed your lifestyle, e.g. eating, fitness, spiritual?  I am now reading a book "Life over cancel" by Dr. Keith Block.  In it he talks about integrative cancer treatment.  My wife has survived 2 and 1/2 half years since being diagnosed with stage 4 nsclc.  She is doing okay thanks to Traceva but we think she has developed a resistance to it.  So, she is doing Alitma as a preventative measure.  We are also talking about trying to get Afatinib, which has done very well in clinical trails and has a biochemical way to fight the resistance.  My wife also gets those nasty sore (you called them pimples), when they first erupt she uses pure Frankincense oil and that takes away the pain & heat.  They usually are gone quickly after that.  Well, we sincerely wish you the best, keep doing what you are doing, may you live a long life and enjoy every second of it. Ernie egrow Sun, 17 Feb 2013 00:00:00 GMT There are lots of reports here from Tarceva-users, including several by me. It'll be 4 years for me come April, at least 3 of them which I would not have had without Tarceva so I am very grateful for it. Of course I have side-effects (occasional pimples, once inside my mouth and down my throat which I treated by stopping the Tarceva for a few days while it healed; diarrhea frequently, tiredness) but worth it. In January I had to take anti-malarials for 4+ weeks as we were in Burma for over 3, and that taxed my system, but hey, I spent 3 weeks in Burma!! I lead my life the way I want to, deal with the side-effects and am grateful every day for the research that led to the development of this drug. Sure beats having lung cancer and a much more limited life and lifestyle. Does this answer your question?? Margaret FT MargaretFT Sat, 16 Feb 2013 00:00:00 GMT Anyone our there taking Tarceva now? jan12257 Sat, 16 Feb 2013 00:00:00 GMT Your post caught my eye because my 91 1/2 yr old mother has been on tarceva since Feb. 2012. She is just now experiencing her first side effect other than it making her tired.. she is having a light rash right now. The doctor will be reevaluating her situation next month. Here is a link to her journey (written in July): http://bestrealhealth.com/mamas-cancer-journey-prayer-supple My mother will be 92 in Oct 2012. patamoon Fri, 21 Sep 2012 00:00:00 GMT On Jul 03, 2012 11:30 PM daisyloo wrote: my husband was on Tarceva and broke out so horrible the doc said he had not seen it that bad and asked to take photos to validate it. he let my husband go on with it until he went on carribbean vacation. The person taking over for the doc said  well there is an antibiotic that can lessen this rash and prescribed it . why his original doctor never told us this  or prescribed it is beyond me  and from then on I googled everything as I lost confidence in a doc that knew there was something that could help and never gave us an option.so "" target="_blank" rel="nofollow">http://option.so " target="_blank" rel="nofollow">option.so for you that have the rash ASK about antibiotics.My 87-year-old mother has been on Tarceva since May 2010 and continues to do very well.   Earlier in her treatment she developed a severe rash (bull's eye lesions) and the oncologist ceased the Tarceva, much to our dismay.  She was started back on a reduced dose of Tarceva (75 mg).  At the same time we fortunately discovered ELIDEL cream, which improved the rash within a couple of days, until it totally disappeared in a week or two.  Soon afterwards, Mom's Tarceva dosage was increased to 100 mg daily, with no further rash problems. houstj Wed, 04 Jul 2012 00:00:00 GMT my husband was on Tarceva and broke out so horrible the doc said he had not seen it that bad and asked to take photos to validate it. he let my husband go on with it until he went on carribbean vacation. The person taking over for the doc said  well there is an antibiotic that can lessen this rash and prescribed it . why his original doctor never told us this  or prescribed it is beyond me  and from then on I googled everything as I lost confidence in a doc that knew there was something that could help and never gave us an option.so for you that have the rash ASK about antibiotics. daisyloo Tue, 03 Jul 2012 00:00:00 GMT On Apr 22, 2012 6:47 PM koike wrote: This is a response to ddiane who wonders if Tarceva is "aggressive enough"  for her mother, who has the EGFR mutation.  The day before my husband was to start chemo for his nslc (stage iv) the tests came back showing it was EGFR.  Our oncologist was overjoyed because Tarceva is a drug that targets that particular genetic mutation much more effectively than chemo.  There are also other drugs available which target this cancer, so we have our hopes up.  My husband (non-smoker, 67 years old, no symptoms, cancer discovered by x-ray for something else) has been on it about 4 weeks, so we don't know how well it is working.  His main side effects have been the rash, which started after 6-7 days and fatigue.  It has been improving with low dose doxycycline, the ointment others have mentioned (both need presecriptions) and moisturizers - cetaphil (over the counter) is good.  We are fortunate to have a major cancer hospital in our community.  If you have such a facility nearby, get a referral to go there and ask for the Dr. in charge of the pulmonary dept.  You will get the most up-to-date information and treatment.Hi Koike, I am ddiane but Im the one with the cancer not my mom I just thought maybe I misworded something to not make my post sound right.  Im happy that Tarceva is working for your husband I just had a full pet scan and Ive been on it for about a 1/2 yr now and it showed very little growth which I was happy to hear.  I also was given the doxycyline but it makes me very sick even in the 50 mg dose.  But I just wanted to say Im happy for you and your husband God Bless and take care.  ddiane ddiana Tue, 24 Apr 2012 00:00:00 GMT Ask your doctor about Genentec. There is help for someone that may have income restrictions. Good luck to your wife.  My 85 year old Father has lung cancer and has been on Tarceva for over a year and he is doing extremely well on this drug. Growth is minimal over the last 12 months. He has survived pneumonia twice in the last year. He is my miracle! The doctor discontinues the Tarceva while he is being treated for pneumonia to regain strength and gain weight. demariano Mon, 23 Apr 2012 00:00:00 GMT This is a response to ddiane who wonders if Tarceva is "aggressive enough"  for her mother, who has the EGFR mutation.  The day before my husband was to start chemo for his nslc (stage iv) the tests came back showing it was EGFR.  Our oncologist was overjoyed because Tarceva is a drug that targets that particular genetic mutation much more effectively than chemo.  There are also other drugs available which target this cancer, so we have our hopes up.  My husband (non-smoker, 67 years old, no symptoms, cancer discovered by x-ray for something else) has been on it about 4 weeks, so we don't know how well it is working.  His main side effects have been the rash, which started after 6-7 days and fatigue.  It has been improving with low dose doxycycline, the ointment others have mentioned (both need presecriptions) and moisturizers - cetaphil (over the counter) is good.  We are fortunate to have a major cancer hospital in our community.  If you have such a facility nearby, get a referral to go there and ask for the Dr. in charge of the pulmonary dept.  You will get the most up-to-date information and treatment. koike Sun, 22 Apr 2012 00:00:00 GMT I found eating saltines - a little at a time seemed to help with the nausea.  Things will affect his stomach more than usual on this medication - it's best to stay with bland food for a while and gradually add in other foods he likes.  Premium makes mini saltines that are handy to take with you in a little zip lock bag.  LFF65 Sat, 21 Apr 2012 00:00:00 GMT My father age 87, has Stage 4 Lung/Liver cancer and COPD.  He began Tarceva 3 days ago.   So far, the only side effects have been nausea on day 3.   Any suggestions on what foods might curb the nausea?  pamapamo Sat, 21 Apr 2012 00:00:00 GMT On Apr 09, 2012 1:36 AM happy2654 wrote: On Apr 18, 2005 12:00 AM Drmort wrote: My wife will be starting on Tarceva. Medicare doesn't seem to pay for it as it had for her previous chemo drugs. Has anyone had experience with getting Tarceva at a reduced cost?Get in touch with cgrbuc reibursenebtsm thet are ub plano texas,  I am sure they will help you.  you might have to go thorough your DR. if let me know and I will get you a phone number/    happyHi Sorry I spelled it wrong   Chronic Reinbursement,   Plano Texas   phone number 1-877-968-7233   Good luck happy2654 Mon, 09 Apr 2012 00:00:00 GMT On Apr 18, 2005 12:00 AM Drmort wrote: My wife will be starting on Tarceva. Medicare doesn't seem to pay for it as it had for her previous chemo drugs. Has anyone had experience with getting Tarceva at a reduced cost?Get in touch with cgrbuc reibursenebtsm thet are ub plano texas,  I am sure they will help you.  you might have to go thorough your DR. if let me know and I will get you a phone number/    happy happy2654 Mon, 09 Apr 2012 00:00:00 GMT On Feb 22, 2012 3:35 AM LiHall wrote: I had Stage 1A adenocarcinoma lung cancer in December 2011.  I had the tumor removed as well as the right lower lobe. The oncologist wants to put me on Tarceva and  I was wondering if Tarceva would help. I am EGFR positive. I took Tarceva for only 6 days and I developed a very severe rash on my face and scalp and was treated with prednisone, antibiotic and hydroxyine. I was taken off and I am very scared to go back on. Not sure what to do...any advice would be appreciated.My wife has been on Tarceva for 2 weeks now. She developed the rash on her face within the first 5 days, so far no other side effects, hopefully none show up. For her face, she is using an Indian herbal remedy and it is helping, keeping her face cool and limiting the rash. She takes a tablespoon of milk and 2 pinches of yellow turmeric powder, mixes that into a creamy paste and dabs it all over her face with a cotton ball. She does this twice daily on her working days, once in the early morning and once at night just before bedtime. On her days off, she does it one more time in the afternoon. She is absolutely happy with this treatment. Just be aware that turmeric stains are extremely difficult to remove from porcelain, plastic and  linens if they are not cleaned immediately.  Deeprich Sun, 01 Apr 2012 00:00:00 GMT Hello ALL ... I orginally began with tonsil cancer .. spread to the neck .. radiation and chemo eliminated for the time being .. After almost 2 years clean the cancer had found its way to my left lung .. I have 20% removed and then follow-up chemo.  Almost a year clean when in December 2011 scan indicated cancer back in the left lung as well as my neck.  I began a strict program of Tarceva 150mg daily, High Alkaline (low acid) diet (eliminating coffee, processed sugars, soda, red meat), exercise (try for 30 minutes daily), trying to maintain low stress and welcomed prayers.  My scan 2 months later indicated no presence of cancer.  I am still will a nasty rash (chest, back & scalp) - taking a prescribed antibiotic to help .. and split fingers from dryness also. I will maintain the 150mg daily for the time being, as my doctor has recommended this.  We will evaluate the dosage after my next scan in 5 months.  My diet is not as hardcore as it was the first 2 months of my effort, but still strong and committed.  I feel for everyone out there that is going through Cancer .. and their loved ones  .. I believe that it is the combination of weapons that one uses to fight the disease ... and just when I thought the worse, things are better for me now ... and I hope they will be for those struggling now Avocadoguy Tue, 27 Mar 2012 00:00:00 GMT On Feb 22, 2012 7:59 AM LiHall wrote: Hi...thank you for responding. The problem with me is that I have no new tumors and the Tarceva is just being used for a maintenance clean up. I am not sure if this drug is doing me any good or just causing more problems. No alternative was given in my case., just to have  another scan in 4 months. I have read that some oncologists do not give anything for Stage 1A cancer. Plust according to the trial they want me to be on it for 2 years. What is the dose of your Tarceva? Honey all I can say is I was stage 1A adenocaranoma (sp?) and also had lower lobe removed and they didnt give me anything to follow up with and in 3 months time I had another tumor and now am a stage IV NSCLC, you might want to have it to make sure there isnt another reoccurence thats just my opinion Im no doctor.  Someone said a second opinion and that sounds like a good idea Im not one of the lucky ones who has the EGFR mutation or the other one they test for but I'm taking it won't know if has helped till I get a full body Pet Scan in April I will post the results.  God Bless and Good Luck in your recovery.   diana ddiana Fri, 09 Mar 2012 00:00:00 GMT Thank you for this information, really useful. I hope you stay well. JorgeG Thu, 08 Mar 2012 00:00:00 GMT On Feb 23, 2012 9:10 AM MargaretFT wrote: From my perspective as someone who is on Tarceva, what I would like from my carer is encouragement to keep taking the medication and suggestions for symptomatic relief of any side effects. Many have mentioned Clindomycin cream for acne/pimples (from the doctor) which I found was great too, Lomotil or Pepto-bismol or something else to control any diarrhea. The most important thing for me is to continue taking the Tarceva regularly as directed - only 12% of us with nsclc are fortunate enough to have the EGFR mutation so take advantage of what scientific research has come up with for us. As a lifelong non-smoker to be struck with this disease seems very unfair, so I will do all I can to beat it, and I expect my carers to support me in this. All the best to all of us.  I agree with you! Does not seem fair we as non-smokers have this disease, but thank God for Tarceva and we are able to take it with small side effects! God Bless you all!! Princey Sat, 03 Mar 2012 00:00:00 GMT On Feb 24, 2012 6:26 PM ddiana wrote: On Feb 24, 2012 2:10 PM MargaretFT wrote: Diana, I hope that you doubled your dose at the recommendation of your doctor. This is strong stuff and I wouldn't suggest you change it without a doctor knowing you are doing it. God bless you too Diana. I hope you find the strength to stop smoking from now on.Well my friends and family have really been begging me to stop and I wanna stop but its so hard. Then yesterday was the straw that broke the camels back I told everyone if I ask you to buy me ciggys dont bring em if there not here I wont have any to smoke.  So Ive been without since yesterday afternoon and Im miserable as I can be but in a way happy and breathing a lil better.   Thanks     dianaAlso I did double my dose but if I keep it up I will have to call them and let them know Im not smoking which then they will make me go back to 150mgs.   diana ddiana Fri, 24 Feb 2012 00:00:00 GMT On Feb 24, 2012 2:10 PM MargaretFT wrote: Diana, I hope that you doubled your dose at the recommendation of your doctor. This is strong stuff and I wouldn't suggest you change it without a doctor knowing you are doing it. God bless you too Diana. I hope you find the strength to stop smoking from now on.Well my friends and family have really been begging me to stop and I wanna stop but its so hard. Then yesterday was the straw that broke the camels back I told everyone if I ask you to buy me ciggys dont bring em if there not here I wont have any to smoke.  So Ive been without since yesterday afternoon and Im miserable as I can be but in a way happy and breathing a lil better.   Thanks     diana ddiana Fri, 24 Feb 2012 00:00:00 GMT Diana, I hope that you doubled your dose at the recommendation of your doctor. This is strong stuff and I wouldn't suggest you change it without a doctor knowing you are doing it. God bless you too Diana. I hope you find the strength to stop smoking from now on. MargaretFT Fri, 24 Feb 2012 00:00:00 GMT On Feb 21, 2012 9:14 PM MargaretFT wrote: I am beiginning to feel like a Tarceva cheerleader but I do think it is the most wonderful drug. I was diagnosed with stage 3a NSCLC 3 years ago, surgery and 4 cycles of chemo but it came back. I have the EGFR mutation so I have been on Tarceva in decreasing doses for 3 years (I am now on 50 mgs/day) with no cancer at all. I don't care how the oncologist defines my status, whether I am stable or in remission, all I know is that my annual scans show me to be cancer-free. I lead a normal life with minimal side-effects - my hair is thick and curly, my eyelashes are amazing, my eyebrows dark and thick, and I am thrilled to have a pill I can take which allows me to enjoy the good things in my life: my family (4 grandkids especially), friends and good times with my husband a bit longer. So I get a little more tired than I used to, but then is that age or a Tarceva side-effect? I take a rest and life continues to be wonderful. And cancer-free. Lynnb522 - if your mother has the EGFR mutation, go for it. Tarceva is such a gift to those of us who are fortunate enough to have it, despite the side effects. I'd rather cope with side effects than cancer - 10 years ago we didn't have a choice.Good for you Margaret thats great to hear you lead a somewhat normal life Im happy for you I can only pray it works as well for me.  God Bless you and may you continue to enjoy the good things in life.  diana ddiana Thu, 23 Feb 2012 00:00:00 GMT On Feb 23, 2012 8:56 AM MargaretFT wrote: My oncologist lowered my daily Tarceva dosage from 150 mgs to 50 mgs very slowly. I went from 150 to 100 after 3 months and an all-clear scan. A year later, a clear PET scan (I mean no sign of cancer cells) so dose dropped down to 75 mgs.. Same again last April and I continue fine on 50 mgs. I'll have another scan in April and if it still clear I don't what will happen - we'll see. If the dose drops too low and cancer cells reappear, then increasing it again gets rid of them - so she tells me, and as she was one of the lead clinicians studying Tarceva when it first came out, I trust her implicitly. As for side effects, I'd prefer to deal with them than have lung cancer.Well thats great if your scan was all clear I would think they are just lowering your dosage just to make sure if there would be any cancer cells left, after the 50 they might take you off of it all together who knows Im happy to hear its worked so well for you.  I just for the first time doubled my dose about ten minutes ago and I feel real hot all over and I'm scared I hope this don't land me in the hospital.  All over cigarettes 30 some yrs of smoking its very hard to quit but I should be able to if not for me for my kids I hate myself for not being able to put them down.  Well good luck and hopefully you'll still have clear scans.  God Bless you.   diana ddiana Thu, 23 Feb 2012 00:00:00 GMT From my perspective as someone who is on Tarceva, what I would like from my carer is encouragement to keep taking the medication and suggestions for symptomatic relief of any side effects. Many have mentioned Clindomycin cream for acne/pimples (from the doctor) which I found was great too, Lomotil or Pepto-bismol or something else to control any diarrhea. The most important thing for me is to continue taking the Tarceva regularly as directed - only 12% of us with nsclc are fortunate enough to have the EGFR mutation so take advantage of what scientific research has come up with for us. As a lifelong non-smoker to be struck with this disease seems very unfair, so I will do all I can to beat it, and I expect my carers to support me in this. All the best to all of us.   MargaretFT Thu, 23 Feb 2012 00:00:00 GMT My oncologist lowered my daily Tarceva dosage from 150 mgs to 50 mgs very slowly. I went from 150 to 100 after 3 months and an all-clear scan. A year later, a clear PET scan (I mean no sign of cancer cells) so dose dropped down to 75 mgs.. Same again last April and I continue fine on 50 mgs. I'll have another scan in April and if it still clear I don't what will happen - we'll see. If the dose drops too low and cancer cells reappear, then increasing it again gets rid of them - so she tells me, and as she was one of the lead clinicians studying Tarceva when it first came out, I trust her implicitly. As for side effects, I'd prefer to deal with them than have lung cancer. MargaretFT Thu, 23 Feb 2012 00:00:00 GMT You would need to ask a doctor that question.  LFF65 Thu, 23 Feb 2012 00:00:00 GMT On Feb 23, 2012 1:27 AM LiHall wrote: Hi...I am just wondering if they lower the dose from 150 to 50 would it still help in the maintenance of cancer cells. Hi Im no doctor to know how to answer that were you or your loved one having really bad side effects is that the reason they dropped the dosage.  From what people have told me Tarceva is a strong good medication aside from the horrible side effects.  My oncologist told me to double my dose cause  Im still sneaking smokes and I'm scared to death to do it and I havent for over a week now I should be taking 300 mgs and Im not I'm still taking 150mg's.  I would imagine after you or your loved one takes the medication for I think its 3 months they will do a scan to see if its working if not they may raise it.  I wish I could tell you more, maybe consider calling them and asking them if its enough. Good Luck and let me know what they say. I will add you to my long list of people to pray for.     diana ddiana Thu, 23 Feb 2012 00:00:00 GMT Hi...I am just wondering if they lower the dose from 150 to 50 would it still help in the maintenance of cancer cells.  LiHall Thu, 23 Feb 2012 00:00:00 GMT On Feb 21, 2012 5:21 PM lynnb522 wrote: Hello, I'm new to this site.  My mom is 66 years old and was diagnosed with stage 1b NSCLC andeoncarinoma in March of 2010.  She had Cyperknive radiation a that time which did help to shrink the tumor.  In May of 2011 a spot of "something" showed up on her pet scan in the spine (T10 vertarea) the Dr decided to watch it as she had not pain an no other symptoms.  In Sept of 2011 another new spot developed on the right hip, they did a biopsy on the spine it came back non-diagnostic, same think this past month but because the spots are showing more pet uptake and her orginial lung biopsy shows the EGFR mutation the oncologist is putting her on Tarceva instead of doing IV chemo.  I am concerned this is not aggressive enough.   Has anyone else had a similar situation? By the way she also had NSC adenocarcinoma 17 years prior to the most recent diagnosis that they considered "cured". For anyone who has been on Tarceva for any lenght of time have you been concidered "in remission" at any point since being on Tarceva? Any tips or help would be greatly appreciated!  Thank you~Hi sorry to hear about your mom what I can tell you is that it is good that she tested positive for the EGFR mutation as I didnt and they still put me on it Ive only been on it for 1month and a 1/2 and they want me to double my dose cause Im still struggling with quitting smoking.  Im sure you will hear from others their opinion but I wont know nothing till next week when I get my scan done if it has helped me or not. I will be sure to come back and post my results so that you know.  Good Luck and I will pray for you and your mom.   diana ddiana Thu, 23 Feb 2012 00:00:00 GMT I also took it for maintenance, my dosage was 150 as well. I am stage 3 though, all my scans have been good so far. anndoy Wed, 22 Feb 2012 00:00:00 GMT I meant "your treatment".  LFF65 Wed, 22 Feb 2012 00:00:00 GMT I'm taking Tarceva 150.  What were you taking?  Maybe you should get a 2nd opinion on our treatment.  LFF65 Wed, 22 Feb 2012 00:00:00 GMT Hi...thank you for responding. The problem with me is that I have no new tumors and the Tarceva is just being used for a maintenance clean up. I am not sure if this drug is doing me any good or just causing more problems. No alternative was given in my case., just to have  another scan in 4 months. I have read that some oncologists do not give anything for Stage 1A cancer. Plust according to the trial they want me to be on it for 2 years. What is the dose of your Tarceva?  LiHall Wed, 22 Feb 2012 00:00:00 GMT On Feb 22, 2012 3:35 AM LiHall wrote: I had Stage 1A adenocarcinoma lung cancer in December 2011.  I had the tumor removed as well as the right lower lobe. The oncologist wants to put me on Tarceva and  I was wondering if Tarceva would help. I am EGFR positive. I took Tarceva for only 6 days and I developed a very severe rash on my face and scalp and was treated with prednisone, antibiotic and hydroxyine. I was taken off and I am very scared to go back on. Not sure what to do...any advice would be appreciated.I also had a severe rash on my face and was also treated with prednisone & antibiotic and a cortisone cream.  I stuck with the Tarceva because it was the only option I had for my Stage IV NSCLC.  My face cleared up and hasn't reoccurred.  My scalp seems to be sensitive so I try not to use hot water on it and use gentle shampoo/conditioner.  There are side effects with this medicine but everyone reacts differently.  Does your Dr. want you to give it another try?  I've been told that if you do get that rash and reaction, then the Tarceva is working.  I am also EGFR positive.  I've been on it since Nov. 2010 and although I'm not completely back to my normal self, I am happy to say that every time I have a scan done, they say I'm doing well and am "stable".  My tumors have shrunk and are staying the same, not growing.  They didn't give me much to look forward to in the beginning when I was first diagnosed, but after taking Tarceva for this long, I now find that I am trying to do everything that I normally would be doing.   I do get tired during the day, sometimes I feel that I don't remember things as well, but I'm 66 yrs. old and it could just be "age".  My Dr. is very pleased with my progress.  Maybe you should give it another try?  Did they offer you an alternative? LFF65 Wed, 22 Feb 2012 00:00:00 GMT One thing that helps with the rash is clindagel, it really worked wonders on my rash. As for the diarrhea, pepto bismol helped at first but I hated the taste and then started taking Align and that significantly took the worst of it away. I experienced muscle cramps in my legs and my side, a blood test showed that the Tarceva knocked my potassium and magnesium levels really low, I was able to get a handle on that by taking OTC magnesium and the doctor prescribed potassium pills, those and a daily banana and one large powerade helped quite a bit. Good luck and for me, asking Tarceva was really worth it. anndoy Wed, 22 Feb 2012 00:00:00 GMT I had Stage 1A adenocarcinoma lung cancer in December 2011.  I had the tumor removed as well as the right lower lobe. The oncologist wants to put me on Tarceva and  I was wondering if Tarceva would help. I am EGFR positive. I took Tarceva for only 6 days and I developed a very severe rash on my face and scalp and was treated with prednisone, antibiotic and hydroxyine. I was taken off and I am very scared to go back on. Not sure what to do...any advice would be appreciated. LiHall Wed, 22 Feb 2012 00:00:00 GMT On Feb 21, 2012 9:14 PM MargaretFT wrote: I am beiginning to feel like a Tarceva cheerleader but I do think it is the most wonderful drug. I was diagnosed with stage 3a NSCLC 3 years ago, surgery and 4 cycles of chemo but it came back. I have the EGFR mutation so I have been on Tarceva in decreasing doses for 3 years (I am now on 50 mgs/day) with no cancer at all. I don't care how the oncologist defines my status, whether I am stable or in remission, all I know is that my annual scans show me to be cancer-free. I lead a normal life with minimal side-effects - my hair is thick and curly, my eyelashes are amazing, my eyebrows dark and thick, and I am thrilled to have a pill I can take which allows me to enjoy the good things in my life: my family (4 grandkids especially), friends and good times with my husband a bit longer. So I get a little more tired than I used to, but then is that age or a Tarceva side-effect? I take a rest and life continues to be wonderful. And cancer-free. Lynnb522 - if your mother has the EGFR mutation, go for it. Tarceva is such a gift to those of us who are fortunate enough to have it, despite the side effects. I'd rather cope with side effects than cancer - 10 years ago we didn't have a choice.Thank you guys so much!! I can tell you without a shadow of a doubt that my mom will love long eye lashes, curly hair and dark brows! As a caregiver what do you think I can do to best support her through this? lynnb522 Tue, 21 Feb 2012 00:00:00 GMT I am beiginning to feel like a Tarceva cheerleader but I do think it is the most wonderful drug. I was diagnosed with stage 3a NSCLC 3 years ago, surgery and 4 cycles of chemo but it came back. I have the EGFR mutation so I have been on Tarceva in decreasing doses for 3 years (I am now on 50 mgs/day) with no cancer at all. I don't care how the oncologist defines my status, whether I am stable or in remission, all I know is that my annual scans show me to be cancer-free. I lead a normal life with minimal side-effects - my hair is thick and curly, my eyelashes are amazing, my eyebrows dark and thick, and I am thrilled to have a pill I can take which allows me to enjoy the good things in my life: my family (4 grandkids especially), friends and good times with my husband a bit longer. So I get a little more tired than I used to, but then is that age or a Tarceva side-effect? I take a rest and life continues to be wonderful. And cancer-free. Lynnb522 - if your mother has the EGFR mutation, go for it. Tarceva is such a gift to those of us who are fortunate enough to have it, despite the side effects. I'd rather cope with side effects than cancer - 10 years ago we didn't have a choice. MargaretFT Tue, 21 Feb 2012 00:00:00 GMT When I started Tarceva, I developed a terrible case of acne on my face and I thought I'd go out of my mind.  My doc prescribed a cortisone cream and it helped immensely.  After that bout of the "rash" I have been fairly back to normal.  My side effects after that was thinning hair - it didn't fall out completely but got very limp and thin.  I started Tarceva Nov. 2010 and I'd say by Jan. 2011 my hair was awful.  I had it cut really short and just let it do what it wanted to do.  It started to grow back extremely kinky and frizzy but it did come back.  My neighbor complimented me the other day on my "perm" !  She doesn't know about my condition so I just said "thanks".  I've always had nice silky straight hair that looked nice in a bob.  Now I have this curly hair that goes every way it wants to and is hard to style into anything.  If I try to blowdry my hair, I look like "frizzy head".  It's best to just use a curling cream on it and just let it dry by itself or use a diffuser so your hair doesn't start to blow around.  Also, it's growing at a snails pace.  All I can say is at least it's still growing.  I have also had bone pain in my legs and the doctor doesn't seem real concerned about it.  They want me to make sure I take calcium.  I try to drink a protein drink at least once a day.  Another crazy side effect is that my eyelashes have been growing and are now almost annoying.  I've always wanted longer lashes, but this is crazy.  They want to curl every which way.  I tame them with a coat of mascara!  I'm sure there are more side effects that I've gotten so used to that I've forgotten to mention them, but I'll post them if I think you need to know any of them.  I hope your mom does well on the medication.  LFF65 Tue, 21 Feb 2012 00:00:00 GMT  I was diagnosed with NSCLC a year and a half ago and was put on Tarceva 150 on Thanksgiving day, 2010.  I have had f/u CAT scans every 6-8 weeks and so far, the tumors have shrunk and haven't changed while under treatment.  My doctor doesn't say "remission" but he does say I'm "stable".  At this point, I'll take that.  The side effects on this medicine can be challenging, but so far I've managed to deal with them.  They said they wouldn't do IV chemo or radiation on my lungs so I either had to go with a "clinical trial" which I was afraid of, or Tarceva 150, so that's what I decided to do.  LFF65 Tue, 21 Feb 2012 00:00:00 GMT Hello, I'm new to this site.  My mom is 66 years old and was diagnosed with stage 1b NSCLC andeoncarinoma in March of 2010.  She had Cyperknive radiation a that time which did help to shrink the tumor.  In May of 2011 a spot of "something" showed up on her pet scan in the spine (T10 vertarea) the Dr decided to watch it as she had not pain an no other symptoms.  In Sept of 2011 another new spot developed on the right hip, they did a biopsy on the spine it came back non-diagnostic, same think this past month but because the spots are showing more pet uptake and her orginial lung biopsy shows the EGFR mutation the oncologist is putting her on Tarceva instead of doing IV chemo.  I am concerned this is not aggressive enough.   Has anyone else had a similar situation? By the way she also had NSC adenocarcinoma 17 years prior to the most recent diagnosis that they considered "cured". For anyone who has been on Tarceva for any lenght of time have you been concidered "in remission" at any point since being on Tarceva? Any tips or help would be greatly appreciated!  Thank you~ lynnb522 Tue, 21 Feb 2012 00:00:00 GMT Yes I have the EGFR mutation which is why I am so sensitive toTarceva. Hope it works for you too even if you don't have it. Certainly worth a try. Good luck!! MargaretFT Fri, 17 Feb 2012 00:00:00 GMT did you have the egfr mutation test and if so, was it positive? i do not have the mutation and wonder if the tarceva will help anyway. I've had Alimta and Carboplatin chemo for 4 months and this will be an option. the other option is taxotere and I would really prefer the pills if possible. thanks and hope all continues well for you aline Fri, 17 Feb 2012 00:00:00 GMT I have been on Tarceva for almost 3 years and I have never had bone pain, though I do get occasional calf muscle cramps at night. I also get the occasional rash (pimples) on my face, currently just inside my mouth. What matters to me is that my cancer has been gone for all that time, for which I am very grateful. Those sensitive to Tarceva tend to be hypersensitive, which I am, but my side effect is diarrhea, which is cope-able with. I encourage your mother to persevere, and good luck!! MargaretFT Fri, 17 Feb 2012 00:00:00 GMT Hi Dnazay, My mom starts her Tarceva for a week and she immediately has bad bone pain from her left knee up to her hip on the second day. Will this side effect eventually disappear? I don't know if I heard it correctly that patients taking Tarceva and get  severe rash as side effect will have a better chance to live longer? I have not seen my mother has rash. Please share if you know any thing about Tarceva. Thank you and God bless all of us. HieuNguyen Fri, 17 Feb 2012 00:00:00 GMT On Apr 18, 2005 12:00 AM Drmort wrote: My wife will be starting on Tarceva. Medicare doesn't seem to pay for it as it had for her previous chemo drugs. Has anyone had experience with getting Tarceva at a reduced cost?Hi my partner has just begun taking Tarceva and because she is on Disability we get it for $5.80 otherwise it would cost $34.50 and Medicare is covering it as it's real price is $3300 per script! wennett Sat, 11 Feb 2012 00:00:00 GMT Tarceva is covered under Medicare part D with a relatively smallco-pay.  MBBMD Sat, 04 Feb 2012 00:00:00 GMT On Jan 20, 2012 6:38 PM MargaretFT wrote: Yes your oncologist needs to arrange this as the test is actually a biopsy of your tumor. About 12% of the popul\ation have the EGFR mutation - hope you do too!! Good luck. sam60glass - what chemotherapy were you on that proved so effective? MargaretFTThanks for the info re: the test I will ask them about it when I get there this coming tuesday. I was getting Alimtia (spelling?) and carboplatin (Sp?) which did really work well but then I got this bump on my side as I said and it grew real fast.  Oh and this is important about my 7th or 8th treatment I had a bad reaction to the carboplatin but I swear that the nurse started my chemo and then said let me go get your premeds and if that was the case   then thats what caused the bad reaction was I didnt have my pre-meds first.  But they took me off of the carbo after that happened and I went for a few more treatments w/ just Alimintia. ddiana Fri, 20 Jan 2012 00:00:00 GMT It's ok, I find myslef explaining the same things when asked quesitons.  I am stage 3 non-small cell, non-smoker. I had my right lower lung lobe removed also, then a round of chemo, followed by 6 weeks of radiation because one of my lymph nodes had some cancer cells.  When I was done with that my oncologist put me on Tarceva.  I also was diagnosed on September 2009. I was taken off Tarceva back in June of 2011 and won't get put back on it unless my scan comes back showing the cancer has returned.  I'm 44 now, and I have heard from others that my age may have really played a hand in where I am now.  Symptoms I had while taking it was sporatic facial rash although I was on clindagel and that really helped keep it tame, also diarrhea, I had terrible muscle cramps though but I tried to offset that with extra potassium and magensium which made it better but not go away completely. I also had the longest eyelashes ever and but I could no longer eat spicy foods.  Once I was taken off all symptoms ceased and I 'm back to eating my spicy foods. I was fotunate enough to have been asked to join a clinical trial although I was never actually chosen to take the drug (avastin) but I'm part of this trial for 5 years so I get constant xrays and scans so I am hopeful that if it does come back they will catch it early.  When I was diagnosed I had a huge tumor in my lung, if I hadn't had a cough that wouldn't go away for over 9 months I would have probably never had the chest xray.  Miracles.  I am thankful.  anndoy Fri, 20 Jan 2012 00:00:00 GMT Yes your oncologist needs to arrange this as the test is actually a biopsy of your tumor. About 12% of the popul\ation have the EGFR mutation - hope you do too!! Good luck. sam60glass - what chemotherapy were you on that proved so effective? MargaretFT MargaretFT Fri, 20 Jan 2012 00:00:00 GMT Someone sent me a I guess its called a private message from this thread on the board but my computer is saying the link is longer available that they have changed alot of things and to use the main page to try to find what Im looking for.....does anyone or can anyone tell me how to get a private message that was sent to me?     Thanks in advance for your help diana ddiana Fri, 20 Jan 2012 00:00:00 GMT Thanks for the info and I am at Stage 4 NSCLC, I was diagnosed in Sept 09 was very small spot, early find and I was so scared that I let them operate on me and take on section of my right lung, then it spread with all the surgeries Ive had either for a port to be put in, or a medioscopy (sp?), and or biopsy they have cut me quite a bit and everytime they have it has spread Im now considered to have recurrent cancer and I just found a new lump under my right armpit that is causing me alot of pain.  My oncologist put me on this after only 1 round of chemotherapy and Im worried this medication isnt good for me as I have liver disease, eye problems (glaucoma testing soon), and I also have bad acid reflux which they I just lost a friend to having an upper GI Bleed which was the result of a bout of acid reflux.  I just dont know if I need a second opinion or what I told the oncologist about this new lump well I told his nurse and they were like we'll check it out in Feb when we see you?  I just had a lump removed about a month ago that was next to my right breast on my side and it grew so fast 3 weeks and it was huge they said its an aggresive strand so why would they make me wait now.  I feel like they have given up on me.  You ask one simple ? and I gave you my whole history, sorry bout that lol      diana ddiana Fri, 20 Jan 2012 00:00:00 GMT what stage lung cancer are you? anndoy Fri, 20 Jan 2012 00:00:00 GMT On Jan 20, 2012 5:31 AM ddiana wrote: Do I need to ask my oncologist to due this test to see if I have the EGFR mutation?  Is there a special name of the test?  Thanks in advance for any information. God Bless all the people on this site and everywhere fighting Cancer.   dianaYes, you will need to have your oncologist ask for this test - it is done on a biopsy. My understanding is that the test is not automatically run for various reasons, one of them that possibly only 5% qualify. I do not know the name of the test but every oncologist I have ever spoken with about my case has known about the test. Hi Diana - As an update to my original post - I ended up taking Tarceva for 17 months before my body developed a resistance. The 17 months was great without major side effects - just a little rash on my back, chest and face. I've now gone successfully through chemo and probably eliminated the resistant lesions. My oncologist and I are considering going back on Tarceva as one of many alternatives at this point - three years after my first symptom. Hang in there! sam60glass Fri, 20 Jan 2012 00:00:00 GMT Do I need to ask my oncologist to due this test to see if I have the EGFR mutation?  Is there a special name of the test?  Thanks in advance for any information. God Bless all the people on this site and everywhere fighting Cancer.   diana ddiana Fri, 20 Jan 2012 00:00:00 GMT My experience exactly, but I guess we both have the EGFR mutation, which statistically is more common in non-smoking women. I've been on Tarceva for 2 years 9 months, tumors in lung and brain gone and after a scan (PET or CT) each year my oncologist reduces the dose, so I remain tumor-free on 50 mgs. daily. And of course the side effects (diarrhea mostly) have decreased along with the dose. I live in the UK and I get it free on the NHS. It is the most marvelous drug!! I am so grateful to all the research that has resulted in its development. All good wishes and a dose of luck to those who try it - well worth it, certainly for me. MargaretFT Thu, 19 Jan 2012 00:00:00 GMT Mind you, TARCEVA is a fantastic medicine to cure cancer!!! I was diagnosed with stage 4 lung cancer. I had tumors in my lung and liver quite visible in Jan/2011. But after having tarceva for the last couple of months, my tumors almost vanished!! I am doing much better than before.  The fact is - the medicine has to suit the patient. Once it does, it will definitely work!!! Don't worry. Things will get better for sure. Your boyfriend's brother will get well soon. All my best wishes for him. dnazay Thu, 19 Jan 2012 00:00:00 GMT I was diagnosed with stage 4 lung cancer in Jan/2011. I had done the PETSCAN after having 60 days of 150 mg Tarceva tablets. My tumors both in my lung and liver shrank remarkably!! It miracally worked!! I am doing much better than before. I am sure, your husband will recover too.  All my best wishes. dnazay Thu, 19 Jan 2012 00:00:00 GMT Thanks Donna I appreciate it, and boy at least I dont feel like the only  person told they have lung cancer and cant quit smoking.  It just seems like everyone I've talked to just quit the day they heard, Ive been smoking for about 37 yrs its to hard to just up and quit but I have cut down a lot.  Take Care diana ddiana Mon, 16 Jan 2012 00:00:00 GMT I will let you know as soon as we find out, he also has a problem with the ciggy's. Donna mooselady Mon, 16 Jan 2012 00:00:00 GMT Well I wish you all the luck and will keep him in my prayers, I hope its working for him.  I had a lung resection, then it spread then 1 round which is like 9 treatments of chemo and then it spread to my side next to my rght breast and boy did it grow fast they surgically removed that and now they want me to do this tarceva which I am, but Im still fighting with the ciggy's  (which I hate myself for being so weak to not be able to put them down) and they say the Tarceva won't work as well if I am smoking so I need help with stopping.  Please let me know how his scan goes I will remember the date as its my hubbys b-day, so I will look to here from you sometime after that.  diana ddiana Mon, 16 Jan 2012 00:00:00 GMT My boyfriends brother has pancreatic cancer, has been on Tarceva 1 month he has a CTscan on 9 Mar,will let you know how it goes,  he was diagnosed in August but after 27 radiation treatments they could not do surgery on him.  Hope this works!!!!!!   mooselady Sun, 15 Jan 2012 00:00:00 GMT On Apr 18, 2005 12:00 AM Drmort wrote: My wife will be starting on Tarceva. Medicare doesn't seem to pay for it as it had for her previous chemo drugs. Has anyone had experience with getting Tarceva at a reduced cost?Hi I wanted to let you know that when I got my kit of Tarceva it told me if I was having problems paying for the medication that the people who make it will help you out alot that you should let your doctor know you need help.  I hope that is of some help for you. ddiana Fri, 16 Dec 2011 00:00:00 GMT On Apr 21, 2005 12:00 AM Dzimm wrote: You can call the Tarceva Company at 888-530-3083 and they have a foundation that will help with the cost. They totally covered the cost for my mother. I wish you the best.Do not call this number. This number gathers your telephone number and connects you to an Indian receptionist who is not associated with the company. This is not an official company. It sounds like a phishing company offering you money for unknown deals. Shesh! Even in when people are and families are suffering from cancer there are those who will take advantage. Cesskye Sat, 24 Sep 2011 00:00:00 GMT On Sep 02, 2011 3:47 PM margreg wrote: Hi I had been on tarceva for 3 months for a very rear cancer call Thymoma  that has spread through my chest wall& lung.starte "" target="_blank" rel="nofollow">http://lung.starte " target="_blank" rel="nofollow">lung.starte d with 100 had cut back to 50 .Had the rash on face neck & some on scalp no pain ,hair thinning out also had alot of itching down below it drove me crazy so I gave it up for a couple of months then started back on it about 2 1/2 months  ago started back with 50 then after a month started 100  now I'm talking 150 for the frist time a few days ago.Hope "" target="_blank" rel="nofollow">http://ago.Hope " target="_blank" rel="nofollow">ago.Hope it's still work for me,I still get a little rash on the face & neck  The only thing I'm doing difference is I purchase a bottle of Flor-Essence from the health store I take  2 oz's of flor essence with 2 oz of water once in the morring 1 -11/2 hours before my tarceva this do not interfer with the chemo,& will help with the reaction of the chemo . Take a trip to a health store & talk to someone there that could help you & explane it better to you , before you decide to take it's to make sure it will work with your condition it was a great help to me.  Doctors do not know anything about the natural herbals . Please do not stop or change the amount of tarceva your taking without talking to your cancer doctor.I change it on my own & pray to god it will still work for me.God "" target="_blank" rel="nofollow">http://me.God " target="_blank" rel="nofollow">me.God bless your mom & hope the very best for her,tell her to be strong & think postive at all times & Jesus is always there for us then we need him all we got to do is talk to him in our prayers ask for healing , peace & comfort & truely belive in him. God Bless you both.I have found this Website to be very helpful with all kinds of Cancer issues and Solutions: http://liveforeverwithcancer.com/ Johnr_1 Johnr_1 Sat, 03 Sep 2011 00:00:00 GMT Hi I had been on tarceva for 3 months for a very rear cancer call Thymoma  that has spread through my chest wall& lung.starte d with 100 had cut back to 50 .Had the rash on face neck & some on scalp no pain ,hair thinning out also had alot of itching down below it drove me crazy so I gave it up for a couple of months then started back on it about 2 1/2 months  ago started back with 50 then after a month started 100  now I'm talking 150 for the frist time a few days ago.Hope it's still work for me,I still get a little rash on the face & neck  The only thing I'm doing difference is I purchase a bottle of Flor-Essence from the health store I take  2 oz's of flor essence with 2 oz of water once in the morring 1 -11/2 hours before my tarceva this do not interfer with the chemo,& will help with the reaction of the chemo . Take a trip to a health store & talk to someone there that could help you & explane it better to you , before you decide to take it's to make sure it will work with your condition it was a great help to me.  Doctors do not know anything about the natural herbals . Please do not stop or change the amount of tarceva your taking without talking to your cancer doctor.I change it on my own & pray to god it will still work for me.God bless your mom & hope the very best for her,tell her to be strong & think postive at all times & Jesus is always there for us then we need him all we got to do is talk to him in our prayers ask for healing , peace & comfort & truely belive in him. God Bless you both. margreg Fri, 02 Sep 2011 00:00:00 GMT On Mar 30, 2005 12:00 AM Brendals wrote: My 93-yr-old grandmother is soon to start Tarceva. I have appreciated this message board so much because it's the only place we've been able to get any real information. She is using the postings to have a meaningful discussion with her doctor next week. She's down to 80 lbs and has real misgivings about starting Tarceva due to the associated diarrhea. But the consensus is that she might as well try it. She can always stop. Several postings have mentioned reducing the dose from 150 mg to 100 mg or 50 mg, so she's wondering how the dose is reduced. Her question is: what form does Tarceva come in? Pills? Liquid? Brenda Normal 0 I am a 4 time Lung Cancer Survivor. I tried Tarceva for 3 months and it did not work. There is an EGFR Mutation test everyone should ask their doctor about. I did not have it until later. It involves sending the patients Biopsy samples to a lab. Tarceva is prety nasty stuff. "Tarceva only works with cancers that have an EGFR mutation": http://en.wikipedia.org/wiki/Erlotinib Read the Clinical Applications part. I am a 65 yr old Male 220 lb 5ft 6". I was on 150 mg to start and i almost put me in the Hospital and i am in excellent physical shape. So my doc had to back me down to 50mg and ramp me up over a few weeks back up to 150mg. There does not seem to be any way for doctors to scale the dosage by any means. It comes in 50mg, 100mg and 150mg i think. I talked to a much smaller woman about 100lb who was put on 150mg and she had to go to the emergency room. It was too much. Her doctor would not ramp the dose. She had to go to a different doctor. When they run Clinical Trials its usually on like one size fits all, and they don't seem to use their heads to ratio the dose. I don't think there is enough data out there on it. All My Notes are Here: http://www.liveforeverwithcancer.com/ http://www.facebook.com/pages/Live-Forever-with-Cancer/12995 John Johnr_1 Tue, 09 Aug 2011 00:00:00 GMT On Jul 26, 2011 11:57 PM ekushner wrote: My daughter is 32 years old and has had recurrent brain tumors since she was 18, She has been on tarceva 100mg for 2 months. She has a ventricular shunt and it has helped her tremendously. She needs to get it adjusted everytime she gets an MRI however. Since she started tarceva, she has not has a regrowth of her brain tumor. She does complain of back aches and has had some leg weakness. Has anyone ever used tarceva for just treatment of a brain tumor? My wife has been on tarceva for around 6 weeks,and now her liver levels have gone up three times of what they should be.Its unknown if the cancer went to her liver, or its the Tarceva. Any Help           lillypad Wed, 03 Aug 2011 00:00:00 GMT On Jul 26, 2011 11:57 PM ekushner wrote: My daughter is 32 years old and has had recurrent brain tumors since she was 18, She has been on tarceva 100mg for 2 months. She has a ventricular shunt and it has helped her tremendously. She needs to get it adjusted everytime she gets an MRI however. Since she started tarceva, she has not has a regrowth of her brain tumor. She does complain of back aches and has had some leg weakness. Has anyone ever used tarceva for just treatment of a brain tumor? My wife has been on tarceva for around 6 weeks,and now her liver levels have gone up three times of what they should be.Its unknown if the cancer went to her liver, or its the Tarceva. Any Help           lillypad Wed, 03 Aug 2011 00:00:00 GMT On May 07, 2005 12:00 AM Daywoo wrote: I have gone through the break out stage, and then the ends of my fingers began to split. It has been 4 months and I feel fine. However, a couple of weeks ago, my hair began to break off and fall out. It is now very thin, normally I have extremely thick hair. I have been on 150mg and last week the doctor said I could now go down to 100mg to see if the hair shedding would stop. I will not have a CT Scan until June 2nd, I will let everyone know how it goes. I have stage IV Lung Cancer and have been beating the odds for 4 years. My radiation doctor says the latest spot could be radiated, so if the Tarceva does not get rid of it or shrink it dramatically. I will have more radiation. I originally had 6 months of chemo and then 37 radiation treatments, it was gone for about a year, then 6 more months of chemo and it was gone again. Good Luck to AllMy wife has been on tarceva for 6 weeks. Now her LIVER levels are 3 times what it should be. Unknown if the drug or Cancer lillypad Wed, 03 Aug 2011 00:00:00 GMT On Mar 30, 2005 12:00 AM Brendals wrote: My 93-yr-old grandmother is soon to start Tarceva. I have appreciated this message board so much because it's the only place we've been able to get any real information. She is using the postings to have a meaningful discussion with her doctor next week. She's down to 80 lbs and has real misgivings about starting Tarceva due to the associated diarrhea. But the consensus is that she might as well try it. She can always stop. Several postings have mentioned reducing the dose from 150 mg to 100 mg or 50 mg, so she's wondering how the dose is reduced. Her question is: what form does Tarceva come in? Pills? Liquid? BrendaI am a 4 time Lung Cancer Survivor. I tried Tarceva for 3 months and it did not work. There is an EGFR Mutation test everyone should ask their doctor about. "Erlotinib only works with cancers that have an EGFR mutation": http://en.wikipedia.org/wiki/Erlotinib Read the Clinical Applications part. I am a 65 yr old Male 220 lb 5ft 6" and did not have the Mutation test until much later after i stopped Tarceva. I did not have the EGFR Mutation and would not have tried it if i had known. I was on 150 mg to start and i almost put me in the Hospital and i am in excellent physical shape. So my doc had to back me down to 50mg and ramp me up over a few weeks back up to 150mg. There does not seem to be any way for doctors to scale the dosage by any means. It comes in 50mg, 100mg and 150mg i think. I talked to a much smaller woman about 100lb who was put on 150mg and she had to go to the emergency room. It was too much. Her doctor would not ramp the dose. She had to go to a different doctor. When they run Clinical Trials its usually on like one size fits all, and they don't seem to use their heads to ratio the dose. I don't think there is enough data out there on it. All My Notes are Here: http://www.liveforeverwithcancer.com/ http://www.facebook.com/pages/Live-Forever-with-Cancer/12995 John Johnr_1 Sat, 30 Jul 2011 00:00:00 GMT My daughter is 32 years old and has had recurrent brain tumors since she was 18, She has been on tarceva 100mg for 2 months. She has a ventricular shunt and it has helped her tremendously. She needs to get it adjusted everytime she gets an MRI however. Since she started tarceva, she has not has a regrowth of her brain tumor. She does complain of back aches and has had some leg weakness. Has anyone ever used tarceva for just treatment of a brain tumor?  ekushner Tue, 26 Jul 2011 00:00:00 GMT There is financial assistance available through a non profit organization called Cancer Care (866)552-6729. My father gets his 1st dose of Tarceva tomorrow. They were able to pick up the $900 co pay. If they cannot help, contact the company that makes it at (800)240-1224 there are other programs available. mandilynne Sat, 09 Jul 2011 00:00:00 GMT On May 01, 2011 5:24 AM catherineann wrote: Hi, my husband has been on tarceva for about 9 months as well and was reduced to the 100mg after about 6 months because nothing helped with the rash.  It has gotten better but he has a terrible time shaving.  Hates a beard and wants to be clean shaven.  Is using a sensitive skin shave gel all natural, but about 8 hours after he shaves he gets the pustules and the clindamycin burns when he puts it on.  It's been suggested he grow a beard but he really doesn't want that.  Anybody have any suggestions for shaving and keeping the rash quiet?The nurse told us to try  Cetaphil Cleanser and Cetaphil Moisturizer (will burn your eyes). You can buy this at any pharmacy over the counter.  We used this when he was taking another chemo.  A lady at church said her brother had used something that helped - a self-selected remedy and she is going to get me the name of it. She said it helped a lot and the Dr. approved it. jluther Sat, 25 Jun 2011 00:00:00 GMT I am SO thankful I found this discussion board.  Thanks to everyone for your posts and very helpful information.  My uncle has stave IV lung cancer and has been given Tarceva as a "last resort."  He's had 9 days of it now and is having no side effects. :(  We were terribly upset over this, as you're supposed to at least have the rash to prove it's working, so I came looking for some answers.  Although I didn't find exactly when the rash appeared for most people, what I did find was that everyone varied significantly but most of you still had a good outcome.  That gives me hope.  I had so many questions when I started my internet search, and was discouraged when the typical med sites I normally go to left me as ignorant to the info I wanted as when I began, but then I found this.  Most anything I can think of has been discussed and so much more that we would never even know to ask.  My only lingering question is still, how long after beginning the medicine was it before you noticed the side effects?  I'm praying that his 9 days in just isn't long enough for it to have completely gotten in him yet.... The other thing I noticed in this discussion board is the massive support and prayers offered/given to one another.  I've stayed up till 2 a.m. reading the inspirational messages and am so thankful for them - for you - all.  You can add me to the list of those that will be saying a prayer for all of you tonight.  Also, if you're a praying person, please add my uncle.  I look forward to the day I get to see the nearly bald man grow some thick curly hair where his remaining few strands are!  I look forward to the day when we get to celebrate his improvement w/the rest of you.  Thanks again. jackierae88 Thu, 23 Jun 2011 00:00:00 GMT Ernie Thank you for responding. Yes, it certainly did help.   It may be a stretch but it still offers hope!!!   I welcome that hope.  It will keep me strong. I'll join you  praying for all of us. Thank you again. Maya   maya1 Sat, 11 Jun 2011 00:00:00 GMT Maya, I don't know if this helps but I have read somewhere that sometimes chemotherapy changes (evolve) the cancer cells.  I also have seen drs use Tarceva as a maintanence drug after chemotherapy.  This may mean that in some cases, one's cancer cells could become EGFR positive.  I know this is a stretch but it could work.  Keep strong, and keep your hope and spirits high.  We will pray for you. Ernie egrow Thu, 02 Jun 2011 00:00:00 GMT Hi Ii have just started on Tarceva and have been reading all the wonderful success stories including yours.  My oncologist said that I do not have the right mutated cells, however.  My question is , are any of the success stories about someone like me with out the correct mutation?  Would appreciate any feedback.  I have stage IV lung cancer and have gone through 32 weeks of chemo and 6 weeks of radiation .  Praying that this will help.    maya1 Sat, 21 May 2011 00:00:00 GMT On May 07, 2005 12:00 AM Daywoo wrote: I have gone through the break out stage, and then the ends of my fingers began to split. It has been 4 months and I feel fine. However, a couple of weeks ago, my hair began to break off and fall out. It is now very thin, normally I have extremely thick hair. I have been on 150mg and last week the doctor said I could now go down to 100mg to see if the hair shedding would stop. I will not have a CT Scan until June 2nd, I will let everyone know how it goes. I have stage IV Lung Cancer and have been beating the odds for 4 years. My radiation doctor says the latest spot could be radiated, so if the Tarceva does not get rid of it or shrink it dramatically. I will have more radiation. I originally had 6 months of chemo and then 37 radiation treatments, it was gone for about a year, then 6 more months of chemo and it was gone again. Good Luck to AllI started Tarceva (100 mg/day) in September 2009, and, about 3 months into the therapy, my hair started to fall out.  However, it did that only about a week, and I lost only about 30% of the hair.  Then, after a few months, my hair started to grow back -- and some!  And this time all the hair stays.  Now I have a full head of thick curly hair! Just wanted to share.  God bless you!   cclongsun Thu, 19 May 2011 00:00:00 GMT On May 03, 2011 12:57 a.m. Buffy1697 wrote: On Mar 30, 2005 12:00 AM Brendals wrote: My 93-yr-old grandmother is soon to start Tarceva. I have appreciated this message board so much because it's the only place we've been able to get any real information. She is using the postings to have a meaningful discussion with her doctor next week. She's down to 80 lbs and has real misgivings about starting Tarceva due to the associated diarrhea. But the consensus is that she might as well try it. She can always stop. Several postings have mentioned reducing the dose from 150 mg to 100 mg or 50 mg, so she's wondering how the dose is reduced. Her question is: what form does Tarceva come in? Pills? Liquid? BrendaHi Brendals. I have stage 4 Lung Cancer. I am on my 4th pill of Tarceva. You take 1 pill daily. So far I have had no diarrhea except for the normal you get every once in awhile that I had before the Taerceva. Seems it has slowed way down. My dosage is 150 mg. I am down to 90 lbs. I am 45 years old. I am doing the Tarceva instead of chemo. I'm trying to stay away from chemo. I sure pray this Tarceva is the treatment for me and I pray your grandmother finds the right treatment for her. I will keep her in my prayers. Prayers, Blessings and (((HUGS))) sent her way and for you too. Renee' BrownHi Renee my husband has stage 4 cancer and has undertaken 4 months of chemo. The chemo has now stopped working and he has been given a choice of trying Tarceva or trying another chemo drug. We are really confused and wondered why you made the decision you did to go to Tarceva and not try chemo. Would love to hear from anyone out there that has had to face this decision. suehat Thu, 12 May 2011 00:00:00 GMT On Mar 30, 2005 12:00 AM Brendals wrote: My 93-yr-old grandmother is soon to start Tarceva. I have appreciated this message board so much because it's the only place we've been able to get any real information. She is using the postings to have a meaningful discussion with her doctor next week. She's down to 80 lbs and has real misgivings about starting Tarceva due to the associated diarrhea. But the consensus is that she might as well try it. She can always stop. Several postings have mentioned reducing the dose from 150 mg to 100 mg or 50 mg, so she's wondering how the dose is reduced. Her question is: what form does Tarceva come in? Pills? Liquid? BrendaHi Brendals. I have stage 4 Lung Cancer. I am on my 4th pill of Tarceva. You take 1 pill daily. So far I have had no diarrhea except for the normal you get every once in awhile that I had before the Taerceva. Seems it has slowed way down. My dosage is 150 mg. I am down to 90 lbs. I am 45 years old. I am doing the Tarceva instead of chemo. I'm trying to stay away from chemo. I sure pray this Tarceva is the treatment for me and I pray your grandmother finds the right treatment for her. I will keep her in my prayers. Prayers, Blessings and (((HUGS))) sent her way and for you too. Renee' Brown Buffy1697 Tue, 03 May 2011 00:00:00 GMT Hi, my husband has been on tarceva for about 9 months as well and was reduced to the 100mg after about 6 months because nothing helped with the rash.  It has gotten better but he has a terrible time shaving.  Hates a beard and wants to be clean shaven.  Is using a sensitive skin shave gel all natural, but about 8 hours after he shaves he gets the pustules and the clindamycin burns when he puts it on.  It's been suggested he grow a beard but he really doesn't want that.  Anybody have any suggestions for shaving and keeping the rash quiet? catherineann Sun, 01 May 2011 00:00:00 GMT On Feb 04, 2011 10:07 AM MargaretFT wrote: Hi Ed, Thanks for your response. I hope that all goes well for you and that you don't need to start on the Tarceva again. Please do let me know how you progress. Iw as encouraged to hear that your symptoms disappeared completely once you stopped the Tarceva. My oncologist and I are reducing my dose annually so I take only as much Tarceva as I need to control the cancer while minimising the side effects - I'm now on 75 mgs, and will drop to 50 mgs/day in April if my PET continues clear. I get occasional very red eyes, another side effect, and the diarrhea is controlled by a low-dose intestine-only steroid. Not sure how long I want to stay on that though. I am however really enjoying the thick wavy hair I suddenly have, and the long eyelashes! I am reassured to hear that others have muscle cramps - I get them occasioanlly at night in my feet or ankles - and that they are probably a side-effect of the drug. The side-effects are all preferably to having lung cancer though!!   Margaret  Hi!  I agree with you on the thick wavy hair and the abundant eye lashes!  I, like you, also try to bear with some of the lighter side effects as they sure beat having the cancer! God bless!   cclongsun Sun, 20 Mar 2011 00:00:00 GMT On Mar 09, 2011 8:46 PM sha4on wrote: Hi, I was reading your experience of Tarceva and wondered whether you could tell me a bit more about the stiffness you are suffering with.  My mum has been on Tarceva for 8 months now and has just started struggling with stiffness, to the point where she can't move when she has been sat a while.  Pain goes from neck all the way down her body and she needs help to get up or move.  For the next 24hrs or so she struggles with mobility - mainly her legs.  She has had a few of these episodes in the last 3 or 4 weeks.  I wondered if this was similar to your experience? H!  I've been on Tarceva for 1.5 years.  I sometimes feel some stiffness, but never a real problem for me.  I do walk a lot... at least half an hour outdoors unless the weather is absolutely forbidding; and at home, I walk whenever possible 1-1.5 hours every day. I've been an enthusiastic walker all my life, so I don't know if walking is the reason for my not feeling stiff much. God bless!   cclongsun Sun, 20 Mar 2011 00:00:00 GMT On Mar 17, 2011 1:34 PM ErikaZ wrote: My Mother has been on the Tarceva for 6 weeks, question to all of you...is there a better time of day to take it? She currently takes it at 7am, but finds that she is tired all day. Is there anyone that takes it at night? Does it help with the fatigue?I've been taking Tarceva for over 1.5 years.  I always take it in mid-afternoon.  Yes.  I feel tired at times. I just go take a short nap when I feel tired. I think my fatigue is a side effect of the Tarceva, no matter when I take it.  I sort of hesitate to switch to another time, since it's been effective in suppressing my cancer. God bless.   cclongsun Sun, 20 Mar 2011 00:00:00 GMT My Mother has been on the Tarceva for 6 weeks, question to all of you...is there a better time of day to take it? She currently takes it at 7am, but finds that she is tired all day. Is there anyone that takes it at night? Does it help with the fatigue? ErikaZ Thu, 17 Mar 2011 00:00:00 GMT Hi, I was reading your experience of Tarceva and wondered whether you could tell me a bit more about the stiffness you are suffering with.  My mum has been on Tarceva for 8 months now and has just started struggling with stiffness, to the point where she can't move when she has been sat a while.  Pain goes from neck all the way down her body and she needs help to get up or move.  For the next 24hrs or so she struggles with mobility - mainly her legs.  She has had a few of these episodes in the last 3 or 4 weeks.  I wondered if this was similar to your experience?  sha4on Wed, 09 Mar 2011 00:00:00 GMT On Feb 24, 2011 6:39 PM razorray wrote:   Hi all< I've been on Tarceva for 5 months now and so far so good. I have stage iv lung cancer with meits to the back bones and spine. I also have the dry skin so I might try that cod liver oil. Are you taking the liquid form or the capsule? I also experience stiffness, somedays worse then others. If  I do to much I pay for it later, I had a bad night last night but better today. Have to learn that I can't do what i used too I guess. I find I need 12 to 14 hours of sleep or rest everyday.  I take the capsuls.  Bless you! cclongsun Sat, 05 Mar 2011 00:00:00 GMT On Feb 24, 2011 6:39 PM razorray wrote:   Hi all< I've been on Tarceva for 5 months now and so far so good. I have stage iv lung cancer with meits to the back bones and spine. I also have the dry skin so I might try that cod liver oil. Are you taking the liquid form or the capsule? I also experience stiffness, somedays worse then others. If  I do to much I pay for it later, I had a bad night last night but better today. Have to learn that I can't do what i used too I guess. I find I need 12 to 14 hours of sleep or rest everyday.  I take the capsuls.  Bless you! cclongsun Sat, 05 Mar 2011 00:00:00 GMT My dad has pancreatic cancer that has metasticized to the liver.   His oncologist put him on tarceva.    That was 5 months ago.    Dad has tried the tarceva 3 times, but each time the side effects are so horrible that the oncologist has him stop taking it.    After trying it the 3rd time,  dad threw the stuff away. He had horrible diarrhea (the kind where you can't make it to the toilet in time), blisters both inside and outside of his mouth.   The blisters also spread across his face and were especially bad around the rims of his eyes.   His eyes were red, swollen and often matted shut.   When it started to affect his vision,  his oncologist told him not to even try taking it again. It seems to work for some though.   Good luck to you! KaylainTx Thu, 24 Feb 2011 00:00:00 GMT   Hi all< I've been on Tarceva for 5 months now and so far so good. I have stage iv lung cancer with meits to the back bones and spine. I also have the dry skin so I might try that cod liver oil. Are you taking the liquid form or the capsule? I also experience stiffness, somedays worse then others. If  I do to much I pay for it later, I had a bad night last night but better today. Have to learn that I can't do what i used too I guess. I find I need 12 to 14 hours of sleep or rest everyday.   razorray Thu, 24 Feb 2011 00:00:00 GMT Try to take cod liver oil, if it's OK with your oncologist.  I have great experience with cod liver oil:  my very dry skin became real nice and smooth...I also read somewhere that lung cancer patients who're on Tarceva have longer survival if they take cod liver oil regularly.  God bless.   cclongsun Thu, 24 Feb 2011 00:00:00 GMT I am so sorry for your loss. I have been on Tarceva about 6 weeks and wake up every morning sore all over.I was told this is not a side effect of Tarceva.  I am having more problems with swallowing too. They don't want to do a scan yet. What side effects did your husband have. Although I am stage IV I feel like I was doing pretty well even after regular chemo. I would appreciate any feed back. Thank you! kjunmom Sun, 20 Feb 2011 00:00:00 GMT my lovely hubby was walking around well with good quality of life , the after 6 days on tarceva ,he was dead.i think the side effects are very much "played  down".and that  this caused his rapid deterioation and subsequent death he was 46 years old                       traceybr Thu, 17 Feb 2011 00:00:00 GMT If u have heard of Astra Zeneca its a pharmaceducical company that helps with supply people with meds! tonynsha123 Fri, 11 Feb 2011 00:00:00 GMT Hello, My 80 year old mom was diagnosed with Stage IV tonsil cancer last year.  She went through chemo and radiation but was unable to finish due to dehydration and a long hospital stay and rehab.  She is home now and doing ok but just had her 6 month PET scan.  It showed that the cancer has spread to her lungs.  She is too frail for surgery or radiation but we are meeting with the chemo oncologist to see if there are any options for her.  This message board is bringing us some hope.  Does anyone have a similar diagnosis and taking Tarceva with positive results?  Does it work with metastatic cancers? Thank you and God bless. Chantel TillyStubbs Fri, 04 Feb 2011 00:00:00 GMT Hi Ed, Thanks for your response. I hope that all goes well for you and that you don't need to start on the Tarceva again. Please do let me know how you progress. Iw as encouraged to hear that your symptoms disappeared completely once you stopped the Tarceva. My oncologist and I are reducing my dose annually so I take only as much Tarceva as I need to control the cancer while minimising the side effects - I'm now on 75 mgs, and will drop to 50 mgs/day in April if my PET continues clear. I get occasional very red eyes, another side effect, and the diarrhea is controlled by a low-dose intestine-only steroid. Not sure how long I want to stay on that though. I am however really enjoying the thick wavy hair I suddenly have, and the long eyelashes! I am reassured to hear that others have muscle cramps - I get them occasioanlly at night in my feet or ankles - and that they are probably a side-effect of the drug. The side-effects are all preferably to having lung cancer though!!   Margaret   MargaretFT Fri, 04 Feb 2011 00:00:00 GMT Hi, I think the side effects and their severity varies from what I have read. Here is our experience. I read here in someone's message that their oncologist suggested two Immodium in the morning.  My wife has stage IV nsclc and the Tarceva gave her extreme diarrhea.  So, I told her about it and she started taking two in the morning and one at night.  The next week after starting this, her bowel movements became more managable with longer durations between movements.  Now after about a month of during this, she actually skips days of any movement (which sometime makes her want to stop taking the Immodium).  She tried it but she had gastric pains and went back although now I think it is one in the morning and one at night. With regards to the rash, the worst was when she first started.  Although we got a script for steriods, she used her favorite OTC skin cream.  She did use the steriods a couple of time when the rash was painful and / or very itchy.  Now, after six weeks of her taking Tarceva, I am happy to say that her rash is manageable.  No longer does she have the dry lizard skin and no itching. I hope you can stay with the program, the results so far have been terrific.  Good luck! egrow Tue, 01 Feb 2011 00:00:00 GMT My dad was just started on tarceva again.   He took it for a few weeks back in September.  He got horrible blisters all around his mouth and the rim of his eyes.   His eyes nearly swelled shut!  His oncologist had him stop when his weight loss got so dramatic.   He was having horrible diarrhea even when taking his presciptions to help control it.   Dad is taking one pill every other day - 150mg.    My question is this -  for those of you who experienced the "rash",  how long did it last?    Does it ever go away while taking this drug? Dad is stage iv pancreatic cancer with mets to the liver.   KaylainTx Fri, 28 Jan 2011 00:00:00 GMT I'm sure all doctors do it differently. I had scan after one month of being on Tarceva. I was also hospitalized because I got some crazy virus that was giving me high fevers and other sympthoms. Because I was in the hospital and it only being one month on Tarceva my doctor wanted to see if it was working or not. The scans showed that the tumors had started shrinking, my fevers finally went away and now i'll be rescanned every 3 months. I might not have been scanned at one month if I'd not been so ill. seglines Fri, 28 Jan 2011 00:00:00 GMT Hi Sue, Have you been checked for reduction of the tumor?  My wife was diagnosed at stage IV lung cancer started on Tarceva on Dec 22nd 2010 as a first line of treatment.  Her recent visit on Jan 17, 2011 showed a 50% reduction of the 1 inch tumor in her lung and no activity in her lymph nodes (previous PET scan showed bright pink).  Her bone cancer (T2) shows no change.  She has mild side effects and they are managed.  We are considering to zap the bone cancer with radiation but haven't talked with the radiologist yet.  Good luck with your treatment egrow Wed, 26 Jan 2011 00:00:00 GMT  the doctors and in the office is getting the papper work done i beleive to get mom set up for the drug. question is , should i wait and get an answer  first   or should i start calling now to find help ? beause mom is not able to pay for this. another question is. did you need to change your eating habits. did you have trouble with the smell or taste of food once you started the pill?   joannee52 Wed, 26 Jan 2011 00:00:00 GMT Yes...my dad has no insurance...if you contact the company that makes Tarceva...Genetech Corporation...they have an access to care foundation which might be able to help you.. kls8976 Mon, 24 Jan 2011 00:00:00 GMT Has anyone on Tarceva had muscle cramping?  Since I started taking it my magnesium and postassium levels have plummeted and I'm taking supplements but I constantly have leg cramps, cramps in my back and side and they are very painful. anndoy Sun, 23 Jan 2011 00:00:00 GMT What was going on with your eyelashes?  I have been taking Tarceva for 5 month now and I notice my eyelashes are really full but they grow abnormally long and I am constantly having to trim them down. anndoy Sun, 23 Jan 2011 00:00:00 GMT Hi, I'm 56 and have been on tarceva for about 2 months now. It comes in a pill form. So they make 3 different pills, one that is 50, 100, 150. They start you on the 150 because its hold the most promise of success. If its too hard then they can reduce it. I've been on the 150 the whole time. Sue seglines Fri, 31 Dec 2010 00:00:00 GMT Hello Ray and Mararet, I was also diagnosed at 3A.  I had 3 rounds of ineffective chemo, then surgery.  Followed up with radiation.  After I started radiation it was determined thar Tarceva would possibly work on my mutated cancer, so I started Tarceva 150 mg.  I am operating on the assumption that the surgery and radiation took care of the CA and the Tarceva was insurance.  Since the CA hasn't returned The Dr. and I decided to stop the Tarceva, if I had a relapse I would start again.  I am a 3 year survivor.  Ray, there was no prohibitionon sex.  Of course I didn't ask. Margaret, my side effects were getting worse and were slowing down my lifestyle.  I weighed the two options and decided to try and let my body return to normal.  Within days my stomach cleared up, my complexion started to return to normal, my fingernails are getting hard, my hair is growing at a normal rate, my eye lashes aren't growing... the list could continue.  Diahorrea was the most serious problem and it was getting worse.  Lomotil or Immodium both helped.  I quit drinking coffee which was the biggest trigger.  It became a real gamble when considering whether to pass gas or not.  Good luck Ed edandsue Mon, 27 Dec 2010 00:00:00 GMT Hi Ed, I live in the UK, am 68 and a non-smoker. I had NSCLC Stage 3a, surgery and 4 cycles of chemo in case it came back. It did and I started the Tarceva, which I've been on for 19 months, starting on 150 mgs. and now down to 75 mgs/day. No cancer on annual PET scans and blood work - life is great! Side effects are liveable-with - the occasional pimple, dry skin, funny eyelashes, but my oncologist tells that those of who are sensitive to Tarceva are usually hypersensitive, so that's OK, and next spring if I'm still clear we'll drop the dose further.  My biggest problem is the diarrhea which has never subsided. Does anyone have any suggestions for how to cope with it? It drives me crazy as I am very active, play golf, take long-distance walks, play with my grandchildren. Why are you stopping the Tarceva Ed? My oncologist has people who are still on it after 8 years. Please do stay in touch and let me know how you get on. And to everyone on Tarceva or not, medical science is breaking all sorts of barriers all the time and there is always hope. A positive frame of mind works wonders.   Margaret MargaretFT Thu, 16 Dec 2010 00:00:00 GMT  Hi Ed, Good to see your tests are clean. I've been on traceva for @ 2 months and my feet are still bothering me, i can;t do much walking. My toe and finger nails have not split yet but i think they could anytime. I get tired easy without no warning. I never asked my doctor about sex, but is it ok to have sex while on traceva? I don't want to hurt my wife or myself. Did you do any special diet or take vitamins?  Ray  razorray Sun, 12 Dec 2010 00:00:00 GMT I just finished 30 months of 150 mg/day Tarceva.  My symptoms were similar to yours.  The acne was a constant problem, mainly in that every time I saw my reflection it was a remindert ythat I had cancer.  I took minicyclene whenever I had outbreaks.  I am 62 yrs old so I appreciate your feelings at the ripe old age of 44.  I always had the urge to pick at my face, eventually I found out that slight pressure with tweezers would pop the zits without doing a lot of colateral damage which made things easier.  I lost all of the calouses on my feet and they became very tender, my toes still burn at nighttime.  My body thermostat was screwed up most of the time, I frequently had a blanket when everyone else was in light shirts.  I had diahorrea that became worse over time.  Coffee would really set it off.  It was fairly well controlled by medication but I did end up changing my underware a little more frequently. Other things that you can expect:  itchy scalp and face, it felt like something was borrowing into my skin.  Split fingers with thin finger and toenails.  Reduced appetite, I needed to loose weight anyway.  Dry curly hair and funny eyelashes.  It felt like my entire body was dry: dry and flakey skin.  My sex drive remained but it was infrequent that I could achieve a productive orgasm, it was still fun. My tests have been clean for 30 months so I opted out.  Within days most of the symptoms disappeared.  Noe it's boring looking in the mirror, I don't have half a dozen big zits to pop.  I can enjoy a cup of coffee without consequences, my fingernails are getting hard and my sex life is gradually improving. There have been some inconveiniences but I'm a 3 year survivor and I would restart treatment immediately if I have a reoccurrance. Good luck. Ed edandsue Fri, 10 Dec 2010 00:00:00 GMT I just finished 30 months of 150 mg/day Tarceva.  My symptoms were similar to yours.  The acne was a constant problem, mainly in that every time I saw my reflection it was a remindert ythat I had cancer.  I took minicyclene whenever I had outbreaks.  I am 62 yrs old so I appreciate your feelings at the ripe old age of 44.  I always had the urge to pick at my face, eventually I found out that slight pressure with tweezers would pop the zits without doing a lot of colateral damage which made things easier.  I lost all of the calouses on my feet and they became very tender, my toes still burn at nighttime.  My body thermostat was screwed up most of the time, I frequently had a blanket when everyone else was in light shirts.  I had diahorrea that became worse over time.  Coffee would really set it off.  It was fairly well controlled by medication but I did end up changing my underware a little more frequently. Other things that you can expect:  itchy scalp and face, it felt like something was borrowing into my skin.  Split fingers with thin finger and toenails.  Reduced appetite, I needed to loose weight anyway.  Dry curly hair and funny eyelashes.  It felt like my entire body was dry: dry and flakey skin.  My sex drive remained but it was infrequent that I could achieve a productive orgasm, it was still fun. My tests have been clean for 30 months so I opted out.  Within days most of the symptoms disappeared.  Noe it's boring looking in the mirror, I don't have half a dozen big zits to pop.  I can enjoy a cup of coffee without consequences, my fingernails are getting hard and my sex life is gradually improving. There have been some inconveiniences but I'm a 3 year survivor and I would restart treatment immediately if I have a reoccurrance. Good luck. Ed edandsue Fri, 10 Dec 2010 00:00:00 GMT Hi i get  them from a web site in vic aust they post them out, $30 per kilo, web site is www.chitree.com.au i then put the nuts into a coffee grinder, i am feeling really well just back from holiday in la and hawaii, cheers veejet2 Sat, 20 Nov 2010 00:00:00 GMT On Sep 25, 2010 4:40 AM Shelley1025 wrote: try contacting the manfacter of the medication sometimes they have programs for patients that can't afford it. Look up the maker of the drug online and see. Also, If your low income your county might be of some help. Also, check into the Cancer Assoc.  or any Cancer support groups in your area. Also, check with your onocologist to see if they can get samples to help with some of the expense. Someone mentioned a being able to get a grant to support there meds?? You might be able to check into that. Personally, I think it is horrible these meds being possibly being live saving meds are so out of reach for people on low income!  I understand the Medicare formulary and it changes all the time, drives me crazy! Check with all cancer groups around your area in the hospitals too. See if Tarceva has a generic brand as well. Sometime Medicare will cover that but not the brand name. Gosh I wish I could help more! This is terrible!Hi Shelley1025, I am new to this message and blog forum. You posted a message 9/24/10 to another compass user, can you tell me who it was that you were giving suggestions to on obtaining Tarceva via the patient assistance program? I couldn't find their posting. If they or anyone else out there is having trouble with their insurance covereing the medicine, please let me know. I pray that all that are challenged with this disease, please know that you have people praying for you. rita777 Fri, 19 Nov 2010 00:00:00 GMT Hi Miya, I've been on Tarceva 100 mg daily for about 14 months and have been having very mild side effects - mild rash mostly on the upper body; I used to have a very small pimple on my nose and I'd need to apply Klindamycin ointment twice daily until it finally went away (last September, which means it lasted exactly 1 year!)  I love turmeric, curry, ginger, pepper, and all kinds of spices.  I use a lot of different spices for cooking, as I read somewhere that all spices are great for their anticancer activity.  My situation has been stabilized since the complete disappearance of nodules around March 2010.  Best luck on your husband! longsun     cclongsun Thu, 18 Nov 2010 00:00:00 GMT I've been on tarceva since july 2010.  i've had the rash(s) face, neck and scalp.  also on my hands, arms and thighs.  to control the rash i use clindomycine in a 1% phosphate solution, doxycycline 100 mg.  the diarrhea is controlable with over the counter meds.  my blood psi went from a normal of 130/75 to 203/ 185 so i'm on atonolol 50mg.  the Pet showed possible liesions on my spine so now i receive a Zometa IV once a month to prevent bone density loss.  i just had my third PET so i don't have the results, but since july the original tumor has decreased by 1/2.  it still is stage iv nsclg as i have nodes in both lungs in different areas. another item to try with the rash is: almond oil mixed with eucerin cream.  the clindomycin works well to control the worst of the rash; it comes and goes.  note: the rash is an indication that the Tarceva is working, go figure!!  the first week was miserable.  the Zometa is another story.  it will give you flu like symptoms; i just came home from work because i felt so ill. i'm 61 years old and haven't smoked since june of 1976. good luck out there.  hoe this helps   lmsmith1 Wed, 17 Nov 2010 00:00:00 GMT Hi, Could you tell me how to contact to Genentech financial assistance ? My father gets the NSCLC in China. I need the Tarceva and bring to China. Any inforation is Appreciated! a desperate daughter lululu Tue, 16 Nov 2010 00:00:00 GMT I started taking Tarceva 6 weeks ago. I had a ct scan 2 weeks ago and my doctor said it was good if not better. What a relief. My side effects is the upper body rash and acne. Who would of ever thought acne would be a problem for a 44 year old healthy male. Lately my feet ache. They seem tingly or a bit numbness, it's hard to explain. Has anyone else had this problem? Also lately I get the chills, seems worse if its cool and damp out. I am always thirsty so I drink plenty of water, if I drink to much pop I  get stomach cramps and usually diarrhea to follow. I'm on 200mg of morphine twice a day to control the pain, it seems to work unless I try to do too much. Take care and stay strong razorray Mon, 15 Nov 2010 00:00:00 GMT On Jul 26, 2010 2:37 AM etneilav92 wrote: I was diagnosed with Stage IV, Non-small Cell Lung Cancer (adenocarcinoma) with brain metastasis. I'm 36 years old, non-smoker, active lifestyle, plays basketball, badminton, running, and mountain biking. I just started taking Tarceva 150 this morning. I pray that this drug will help me... Thanks. valI'm an active 50 year old non-smoker, been on Tarceva for about 10 months and am stable. My best advice is to drink lots of water and use the clindymicin. They say the rash means it is working - mine is on my forehead, temples, cheeks, shoulders, chest and back. I do get some diarrhea when I don't drink enough water, especially after working out or hiking. My metastasis is in my backbone and pelvis.    Here is my blog where I do daily updagtes - http://sam-s-medical-update.blogspot.com/ sam60glass Tue, 09 Nov 2010 00:00:00 GMT On Oct 12, 2007 12:00 AM Oceanview wrote: My husband (49 yrs old) has NSCLC stage IIIB and started Tarceva about 2 weks ago.  No sign of improvement yet.  One of his major symptoms (it started before taking Tarceva and hasn't changed) is that he perspires.  He gets drenched in his sweat and has to change clothes and sheets 7 - 8 times a day.  Anyone has similar experience?  Overall, he is very weak and under a lot of pain. I'm a 50 year old stage 4 and have been on Tarceva for ten months. Yes! I sweat a lot - but not to that level. And I live in Alaska so it really isn't an issue. I don't have a date pinpointed to when it started. I have a lot of pain but take lots of meds for it - it just never goes away so I think of something else! Also, energy is an issue for so many reasons. Some days are easier to get going than others. I'm on so many things it is hard to say which one causes anything. Therapy has been a great help to me in getting on with my life. Here is my blog. http://sam-s-medical-update.blogspot.com/ sam60glass Tue, 09 Nov 2010 00:00:00 GMT My husband is on a large dose of Curcumin daily while on Tarceva since started the treatment in Aug. I don't see any interactions but having good results. if you read the message I just posted today under Tarceva as first line treatment, you will find out more about my husband's condition. Best luck, Miya ymiya Fri, 05 Nov 2010 00:00:00 GMT I was on Tarceva for 30 months and quit taking it 2 weeks ago.  Within days my stomach settled down and my complexion improved, I'm hoping other things like my hair return to normal also.. I had numerous side affects but all were maneagable and worth it.  Of all the problems, the one that bothered me the most was acne.  The reason being that it was a continual reminder that I might still have cancer. This past year I became highly sensitive to the sun.  I went to a dermatologist and she prescribed a couple different acne medications.  I didn't like either.  My skin was so sensitive that both Finacia and Metrogel burned and seemed to aggrevate the situation.  I explained to her that my acne was caused by Tarceva not the usual cause.  She didn't think that was an issue, I should have talked with my oncologist about it. My oncologist had prescribed Minocyclene whith I would use when things were bad and it would gradually ease the problem.   edandsue Thu, 04 Nov 2010 00:00:00 GMT What kind of sreroid cream did you use?  This rash is driving her and me CRAZY!!!!!!!! EasterBunny Sun, 31 Oct 2010 00:00:00 GMT My Dad was on Tarceva 150mg by mouth(pill form)  for about 8 months. He was diagnosed with stage 4 lung cancer in August '09. His side effects were his hair was very course (he couldn't even shave) and he did get a rash which was treated with a prescriptive skin cream. He discontinued the tarceva for a couple weeks and than would restart again. He developed mets to the ribs and the doctor discontinued the tarceva for good.  He didn't taper off of it. My mom did have a prescription plan that covered the cost. Medicare didn't cover it and it was quite costly. soozy Mon, 25 Oct 2010 00:00:00 GMT my dad is 73 is starting Tarceva tomorrow, he still smokes, I'm concerned should he even try the treatment...he has just gained some weight back... dtoth Mon, 25 Oct 2010 00:00:00 GMT my dad is 73 is starting Tarceva tomorrow, he still smokes, I'm concerned should he even try the treatment...he has just gained some weight back... dtoth Mon, 25 Oct 2010 00:00:00 GMT I had the scalp sores from the tarceva also and my doctor put me on tetricycline and that cleared it up along with the rash on my face. I do wear a hat every time I am in the sun for any length of time and that helps. I use a creme called vanicreme on my face and you can use it on your arms etc also. I have stage IV lung cancer and my last cat scan showed that the tarceva was working as the spots on my lung were stable. I go in for another check up on the 12th of Nov. Good luck to you and I am so thankful for Tarceva. Carol Princey Sat, 23 Oct 2010 00:00:00 GMT On Dec 11, 2008 12:00 AM Pieramonte wrote: Hi everybody. I'm new of this forum and I'm from Itlay.I have a question about Tarceva. If you are a patient that use Tarceva, can you assume food in association with curcumin or spices anticancer (like rosemary,thyme, etc. )? Are there any contra for the association of Tarceva and Curcumin? Thanks very much. My best wishes,MarcoWhat did you find out about any contraindications of herbs with Tarceva? danzcrzy Fri, 15 Oct 2010 00:00:00 GMT On Sep 25, 2010 5:31 AM veejet2 wrote: Hi i have been on tarceva for 9 months, i started on 150mg but couldnt handle the side effect, they reduced it to 100mg and this was almost manageable.  The diorehha is bad ,the rashes and pimples are worse and now i am having finger and toe nail problems,they go black and drop out.I have found that a spoonful daily of ground apricot kernels keeps my lung tumour at bay.  When diagnosed last October and given 3months to live i had a 17cm tumour in 4 weeks it was reduced to 4cm, it is steady at that and i feel wonderful, i work two days a week lplay golf and have been overseas four times,keep positive is the best advice, cheersHi!  You mentioned that you take ground apricot kernels daily.  I had read about this sometime ago.  Do you have a good source for obtaining the kernels, or are they already prepared.     mlab303727 Tue, 05 Oct 2010 00:00:00 GMT I've been on Tarceva 100mg for exactly 1 year and it works very well for me.  Side effects include a pimple on the nose on which I use Klindamycin topical gel which is very effective.  Occasionally I have itchy skin but it's very mild.  I thank God for the quality of life I've been enjoying.  God bless everyone! cclongsun Thu, 30 Sep 2010 00:00:00 GMT My mom was prescribed Clindamycin for the rash from her Tarceva - worked great! mandivan Tue, 28 Sep 2010 00:00:00 GMT Hi i have been on tarceva for 9 months, i started on 150mg but couldnt handle the side effect, they reduced it to 100mg and this was almost manageable.  The diorehha is bad ,the rashes and pimples are worse and now i am having finger and toe nail problems,they go black and drop out.I have found that a spoonful daily of ground apricot kernels keeps my lung tumour at bay.  When diagnosed last October and given 3months to live i had a 17cm tumour in 4 weeks it was reduced to 4cm, it is steady at that and i feel wonderful, i work two days a week lplay golf and have been overseas four times,keep positive is the best advice, cheers veejet2 Sat, 25 Sep 2010 00:00:00 GMT try contacting the manfacter of the medication sometimes they have programs for patients that can't afford it. Look up the maker of the drug online and see. Also, If your low income your county might be of some help. Also, check into the Cancer Assoc.  or any Cancer support groups in your area. Also, check with your onocologist to see if they can get samples to help with some of the expense. Someone mentioned a being able to get a grant to support there meds?? You might be able to check into that. Personally, I think it is horrible these meds being possibly being live saving meds are so out of reach for people on low income!  I understand the Medicare formulary and it changes all the time, drives me crazy! Check with all cancer groups around your area in the hospitals too. See if Tarceva has a generic brand as well. Sometime Medicare will cover that but not the brand name. Gosh I wish I could help more! This is terrible! Shelley1025 Sat, 25 Sep 2010 00:00:00 GMT On Mar 30, 2005 12:00 AM Brendals wrote: My 93-yr-old grandmother is soon to start Tarceva. I have appreciated this message board so much because it's the only place we've been able to get any real information. She is using the postings to have a meaningful discussion with her doctor next week. She's down to 80 lbs and has real misgivings about starting Tarceva due to the associated diarrhea. But the consensus is that she might as well try it. She can always stop. Several postings have mentioned reducing the dose from 150 mg to 100 mg or 50 mg, so she's wondering how the dose is reduced. Her question is: what form does Tarceva come in? Pills? Liquid? BrendaMy mom also was diagnosed with LC and has been having it for over 2 years now, the Dr told me that he is very surprised she is still able to function well after all this time, We say its all been God. I honestly want to let everyone on this forum know that i will say a little prayer for ALL of you who suffer from this awful disease called Cancer. I have seen how much it has affected my mom, but more than anything It has helped me in a very positive way...to see that God is Love amongst the sea of hardship and pain. Why?? Because he somehow always seems to show us that things could be worse...There is always hope as long as you are alive !!!!! Because once your gone, hope is gone for you. Most of the times the message we should get from things like this is to appreciate the people around us because we never know when they will get some God-Awful disease and be gone the next day...same goes for healthy people too. But i learned to see my mother in a whole diffrent way as i was always sweet but i coped an attitude with her at times for no reason and she even though has that condition, would never complain or treat me wrong. I love my mother and would give anything to see her regain her health and God knows that. But i also know that I have learned alot from this and it has forever changed my life for the positive. God hears on all our prayers wether before our sickeness, during our sickness or after our sickness and its only up to him how he will answer them, but lets not ever lose hope in him because if he raised a person from the dead...how much more can he do with a insignificant disease like cancer? Stay positive everyone, Keep praying hard, and never lose hope!!!!! God will ALWAYS come through, maybe not how we expect him to at times, but he will indeed ALWAYS come through!!! I just have 1 request from all of you with this and any other life threatning disease....... SURVIVE IT !!!!!!! Because you CAN !!! Jesus Loves You All and God Bless!!!!! GodWorks Thu, 16 Sep 2010 00:00:00 GMT My father received alot of help from the chronic disease foundation. Please check into this in your area for a representative. phonemanwallace Wed, 15 Sep 2010 00:00:00 GMT My father received a great bit of help from the chronic disease foundation in oklahoma. Check your area for a local representative. Good luck to you and yours'.   phonemanwallace Wed, 15 Sep 2010 00:00:00 GMT Could you post what the Dr prescribed for your rash Thank you Linda lsh402 Mon, 13 Sep 2010 00:00:00 GMT On Jun 03, 2010 11:25 PM anndoy wrote: I've been taking Tarceva for a month now.  I had a bit of nausea the first week, definetly got the rash that same week as well.  I haven't gotten diarrhea from this and a couple of weeks ago someone here mentioned that their physician prescribed a topical gel for their rash and I asked my doctor for a prescription and my face almost looks completely back to normal now.  Lately I have been fatigued alot, I don't know if that's a side effect or I am just staying up too late.  My tumor was already gone when I started this, my physician has me on it for maintenance only and is talking about me being on this maybe two years.  I hope all goes well for those taking Tarceva, I feel I have been really fortunate so far.  Bless you all.Can you tell me the name of the gel Dr gave you for your face when you broke out. Thanks Linda lsh402 Fri, 03 Sep 2010 00:00:00 GMT On Jun 26, 2010 4:06 PM melibob wrote: My husband has pancreatic cancer.  Tarceva is used for this type cancer also, but I haven't seen anyone post with this disease.  He was diagnosed in Feb this year Stage 2, had drip chemo for 2 months and 28 radiation treatments.  The M D Anderson oncologists had thought surgery was going to be an option after all the chemo and rad, but cancer markers in his blood work at the end of rad treatments last week jumped half way back up to where they had been in Feb!  So, surgery for him is off the table.  Tarceva 100 mg begins tomorrow.  Our insurance program covers it with our $25 copay!  Miraculous.  Hubby is 71.  Would love to hear from any other pancreatic cancer patients using Tarceva.  Hi, Just now saw your post re tarceva and pancreatic cancer.  I was diagnosed with pancreatic cancer in Feb 2006.  Had whipple done in april 2006.  Followed that up with Zeloda and radiation.  Then followed that up with 6 cycles of gemzar.  Had a clean CT  scan at that time.  In Jan 2007 I started on tarceva - 100 mg.  Have been on it ever since.  Did have 2 tiny tumors (probably pancreatic_ removed from my right lung in Jan 2008.  Doing well since.  There are several small spots in lung which are being followed, but so far stable.  I am 70 years old.  my primary side effect from tarceva is scalp sores and sun sensitivity.  Hope you husband does as well as I have.  Pat sophia9617 Mon, 23 Aug 2010 00:00:00 GMT @ patti51 -Imodium is great, it works. Some people say to stay away from tomatoes, def no grapefruit juice (which I think someone else already said), adhere to the 1-hour-before or 2-hours-after rule, that will keep the stomach distress to a minimum. The dry skin can also be kept to a minumum with Eucerin over a coating of Vitamin E skin oil, and rashes can be kept down with the use of gentle soaps (Dove, Camay, etc) and as has been mentioned, clindamycin if needed. Also, use sunscreen or wear a big hat if you're going to be out in strong sunlight for a while. As far as nausea goes...I don't really know since I haven't experienced it on Tarceva, but when I had chemo the nurses prescribed Kytril, Zofran, Compazine, or Emend - your oncologist might have a different idea for you. (I never had nausea on chemo, either - nothing comes between me and my food ;)) I think thats all my tips!Take care, librarylion librarylion Fri, 06 Aug 2010 00:00:00 GMT I've been on Tarceva 100 mg for 11 months and last CT/PET checkup showed no more spots in the lungs.  I hope for you great results too! cclongsun Thu, 05 Aug 2010 00:00:00 GMT Leslie, During my other chemo treatments, I generally got a scan every couple months to see how it was working. i'm sure its different for us all though and would depend on the results from the previous scans. I begin Tarceva this week. Good luck to your husband and God Bless.   damho20 Mon, 26 Jul 2010 00:00:00 GMT I was diagnosed with Stage IV, Non-small Cell Lung Cancer (adenocarcinoma) with brain metastasis. I'm 36 years old, non-smoker, active lifestyle, plays basketball, badminton, running, and mountain biking. I just started taking Tarceva 150 this morning. I pray that this drug will help me... Thanks. val etneilav92 Mon, 26 Jul 2010 00:00:00 GMT My friend has stage 3 maybe 4 pancreatic cancer.  She's undergone 28 radiations two weeks of 5FU and multiple series of genzar.  She is now going to take Tarceva 100.   Anyone have any insights, suggestions.  Tricks of the trade for potential rash, skin, diaherra and or nausea.   thanks. patti patti51 Sat, 24 Jul 2010 00:00:00 GMT Yes.  Clindamycin phosphate topical gel 1% works very well.  I've been on Tarceva 100mg since September 2009 and was prescribed Clindamycin phosphate topical gel in November for a little red spot on my nose.  I use it twice daily and find it very effective.  It keeps this little red spot from breaking out. cclongsun Wed, 07 Jul 2010 00:00:00 GMT Sorry I hadn't been on in awhile and didn't see this post asking for the name of that topical gel, it's called Clindmycin phospate topical gel  1% (30 gram gel) and it works wonderfully, I use it on my face and shoulders. anndoy Tue, 06 Jul 2010 00:00:00 GMT Please advise what the topical gel was for the your rash.  Thank you. houstj Mon, 05 Jul 2010 00:00:00 GMT My husband has pancreatic cancer.  Tarceva is used for this type cancer also, but I haven't seen anyone post with this disease.  He was diagnosed in Feb this year Stage 2, had drip chemo for 2 months and 28 radiation treatments.  The M D Anderson oncologists had thought surgery was going to be an option after all the chemo and rad, but cancer markers in his blood work at the end of rad treatments last week jumped half way back up to where they had been in Feb!  So, surgery for him is off the table.  Tarceva 100 mg begins tomorrow.  Our insurance program covers it with our $25 copay!  Miraculous.  Hubby is 71.  Would love to hear from any other pancreatic cancer patients using Tarceva.   melibob Sat, 26 Jun 2010 00:00:00 GMT Anndoy: Can you post the name of the topical gel you used for your rash.  I get it mostly on my stomach, but do get a breakout on my face once in a while.  No matter the side effect, Tarceva is my lifeline and I am over the top grateful! Arlene14 Thu, 17 Jun 2010 00:00:00 GMT I've been taking Tarceva for a month now.  I had a bit of nausea the first week, definetly got the rash that same week as well.  I haven't gotten diarrhea from this and a couple of weeks ago someone here mentioned that their physician prescribed a topical gel for their rash and I asked my doctor for a prescription and my face almost looks completely back to normal now.  Lately I have been fatigued alot, I don't know if that's a side effect or I am just staying up too late.  My tumor was already gone when I started this, my physician has me on it for maintenance only and is talking about me being on this maybe two years.  I hope all goes well for those taking Tarceva, I feel I have been really fortunate so far.  Bless you all. anndoy Thu, 03 Jun 2010 00:00:00 GMT Hope it will eventually work...  God bless! cclongsun Sat, 29 May 2010 00:00:00 GMT My 86 yr old mother with non small lung cancer was just given the prescription for Tarceva from her onocologist.  The cost is horrific  $5000 for 30 days.  Her doctor said they have a financial person at the office that can help her try and get on a program to get the drug at a huge savings.  Have your wife talk to her doctor and see if they have someone at the office.  we were told the program is funded by the pharm. companies.  Go figure that one out.  We were told it takes about 1 week to find out if your are accepted or not. Good luck   rag1116 Thu, 27 May 2010 00:00:00 GMT My husband was diagnosed stage 4 lung cancer in March 09, last year he had chemo and radiotherapy, he started Tarceva in Feb 2010, he got very itchy skin and looked like he had acne but he is tough. He had a scan after 3 months which shows the tumour has not increased at all, although it has not shrunk either. He is doing ok and able to do most things and can walk for long distances. He has been told he will be getting some new drugs from America next month so we will see how he does. Keep your chin up   jontin Tue, 25 May 2010 00:00:00 GMT In many cases that I know of, including my own case (I have locally advanced non-small cell lung cancer), Tarceva causes  the tumors to shrink or diasppear.  God bless!   cclongsun Sat, 17 Apr 2010 00:00:00 GMT We went through the same thing when my sister was put on Tarceva.  It was devasting to her after her first CT scan to find out the tumors would not shrink.  It did do a good job of keeping them from growing. That is just our personal experience.  I would be interested to read some of those reports.  My best to you and you wife. herbigsister Fri, 16 Apr 2010 00:00:00 GMT Hi      My wife Angela was diagnosed Oct 09 with advanced NSCLC,  after 3 months of chemo (that frankly knocked the proverbial out of her) scans revealed that the tumor was still progressing, two weeks ago she started on Tarceva 150mg daily, I read on several forums of reports that tumors are shrinking when taking this drug but both Angela & I recall the Doc saying Tarceva doesn't shrink it just prevents further growth, have we got this wrong (We hope so) look forward to any replies I posted this elsewhere but seem to have lost it (I'm new to this sort of thing) ps we are in the UK Tony tonyj Fri, 16 Apr 2010 00:00:00 GMT my husband was put on tarceva unluckily did not work he has adrenal cancer the only symtoms he got was the spots it is like a rash then turns to look like acne it works on people differantly but if it works for your grandmother its worth a try his treatment of tarceva was stopped after 3 months has they can tell by then if its working his was pills they started my hubby on the 150mg has his cancer is one of the severe ones and quick spreading hope this helps and good luck to your granmother sandra samsan Wed, 14 Apr 2010 00:00:00 GMT Hi just to let you know you can take hydroxzine, there is a new drug come out called Rupatadine which specifically targets pruritus surinder Wed, 14 Apr 2010 00:00:00 GMT May God bless all. cclongsun Sat, 27 Mar 2010 00:00:00 GMT Dear friends, My mom took 50 Tarceva 150mg for 50 days, but its severe side effects especially rash and pruritus (severe itchy skin) annoyed her very much, so her Dr.  prescribed to stop taking tarceva. It is 10 days, but pruritus is continuing and is killling her. What can I do for her? Calamine ointment and Hydroxyzine 10mg tablet don't work on her any more.  Today she took Hydroxyzine 25mg tablet. when does pruritus stop? I can't stand seeing her suffering.   diana3000 Fri, 26 Mar 2010 00:00:00 GMT I have been on Tarceva for 19 months now - the 150 mg dose - my first scan was after 3 months.  It worked in reducing the cancer cells.  One of the typical effects is the reduction quickly, however, cancer cells are very adaptive.  After one year, my cells stopped shrinking and there was some spread to the lymph nodes in the thoracic area.  I am now on Avastin treatments (IV chemo) as well as the continuing to take the Tarceva.  My lungs remain stable and the latest scan shows a reduction in the spread in my lymph nodes.  Hurray!  I had the fatigue with Tarceva, but that got better over a few weeks.  Hopefully your husband sees the same improvement.  I didn't have the nausea, but instead the rash - pretty awful for a few months until my system "got used" to it - then reverted back to normal.  I did see significant thinning of my hair after 3-4 months of tarceva use.  While the makers of Tarceva indicate that it is rare for you to lose your hair, I have now seen many posting from people that the thinning or shedding has occurred.  It doesn't come out in clumps like traditional chemo.  Good luck and stay positive - these newer therapies are life saving.   Ann annb64 Sun, 21 Mar 2010 00:00:00 GMT Hi Diana, In answer to your questions: 1.  You can take tarceva with any drink except grapefruit juice.  Tarceva and grapefruit juice will cause a reaction. 2.  Side effects will lessen over time.  Each person is different.  There is no specific time line. 3.  The hydroxyzine for the itching is what my onc prescribed.  It will not hurt you.  It may make you drowsy though.  I've been on tarceva for over 3 years now and still going strong.  My cancer is in remission.  The side effects, other than some fatigue, are virtually non existent now. Good luck and God Bless   Chessie Tue, 16 Mar 2010 00:00:00 GMT Dear Diana, I can only say from my own experience (6 months of taking 100mg Tarceva daily) that side effects vary from person to person.  I have only experienced rash on the nose (which is controlled very nicely with klindamycin ointment prescribed by my medical oncologist) and very, very mildly itchy skin in the upper body.  I also experienced loss of hair in the 4th month, but it stopped after about a week.  It was little scary as I thought I would lose all my hair!  However, I only lost about 10% of my hair -- all in about 1 week's time.  I attribute my relatively mild side-effects to the lower dosage (100 mg/day).  I would not take Tarceva with any food.  Actually every day I take it 2 hours after a meal and after taking it I wait 1 hour before I eat again (i.e., a total of 3 hours without eating). I would not take it with juice, only water.  I'm on only 2 Rx meds:  Tarceva and Lisinopril-HCTZ.  I don't know if one can take what other drugs.  I think you need to ask your doctor about that.  God bless! cclongsun Tue, 16 Mar 2010 00:00:00 GMT Dear friends,   I have questions about Tarceva.     1. I've heard we have to take Tarceva with empty stomach.  My question is " can we take Tarceva with juice? " or juice makes trouble and we have to take it just with a glass of water?  2. Do side effects of tarceva become less after taking for a period of time?  side effects like rash, fatigue, pruritus, abdominal pains?  If yes, after how long  taking? 3. Can we take medicine like Hydroxyzine for the relief of pruritus? doesn't it make any trouble? I really need to know the answers.I'm so gratefull to you. all. Good luck to all. Diana   diana3000 Mon, 15 Mar 2010 00:00:00 GMT I've been on Tarceva 100 mg a day since last September.  No diarrhea, no serious rash.  Just some break out on my nose which subsided immediately every time I use the ointment that my doctor prescribed.  Had a lung CT and a PET in November 2009 - the cancer spots "improved a million times" according to my doc.  Then, last month, neither my lung CT nor my PET showed no spot.  I'm due for a lung CT in May.  Good luck to all! cclongsun Sun, 14 Mar 2010 00:00:00 GMT Hi Dorothy, My mother in law was diagnosed two years ago with stage lllB lung cancer. She did chemo and radiation and it went away. This past Thursday she was confirmed to have cancer in her lymphnodes on her lung and possibly down the right side of her lung. They prescribed tarceva as treatment. This whole experience is very scary. Can you share your experience with us? Both her sisters died from cancer, one from breast and the other from lung that met to her brain. parnellgen Sat, 13 Mar 2010 00:00:00 GMT hi, I am 85 yrs. old now, and am a 15 yr. survivor of multiple cancers. I have stage4 nsc lung-cancer, and have been on 150tarceva for 4 years.  there are many side-effects which are cyclical & manageable. I take my pill every morning at the same time on an empty stomach, see my doctor monthly, and have a low-dose scan every 3 months. your doctor will determine the dosage. my quality-of -life is good, and I continue to exercise daily. also, attitude is most important. LOVE & PEACE! Lenny_Peacenik Sat, 13 Mar 2010 00:00:00 GMT Hi Diana, YES, tarceva does cross the blood/brain barrier.  My oncologist printed out the documentation for me.  I've been on tarceva now for over 3 years and have never had any mets anywhere.  I pray that the tarceva works as well for your mom as it has for me.  Put it in God's hands, He'll take care of the rest. God Bless       Chessie Thu, 11 Mar 2010 00:00:00 GMT  Dear Chessie   I read your message about tarceva .you wrote: "One thing about tarceva, it crosses the blood/brain barrier and helps prevent brain mets.  Most other chemos do not do that." I want to know " does tarceva really crosse brain barrier?" where do you know it? if it is true,it's really wonderfull. My mother has lung cancer and brain mets and she takes tarceva.  Diana   diana3000 Wed, 10 Mar 2010 00:00:00 GMT Hi Lenny - you might be the one that will know about hair-growth with Tarceva. I have taken it (150 mg) for about 5  months and I'm starting to have to shave every other day or else I would look like a man. I have had some rash and of-course the dry skin etc. but I am thankful for Tarceva - had a scan yesterday will find out results on Tuesdsay. I am very happy to hear that you are able to live with this and that it has been 17 years. Let's pray for another 17.  I would love to hear from you. This is the first time I logged on to a site talking about the lung-cancer. Farmor Farmor Sun, 14 Feb 2010 00:00:00 GMT On Feb 12, 2010 12:29 PM Chessie wrote: It sounds like the tarceva is working for your mom with those side effects.  The side effects will lessen over time.  Your onc can lower the dose until the side effects calm down if they become unbearable, but I would try to avoid that if I could.  It's not that long until the next scan.  One thing about tarceva, it crosses the blood/brain barrier and helps prevent brain mets.  Most other chemos do not do that.  This is a big plus for your mom since she has already experienced brain mets.  That's probably one of the reasons her doctor put her on it in the first place.  After the next scan, and you know definitely that the tarceva is working, and if the side effects are still sort of harsh, then ask about lowering the dose to 100 and working back up to the 150/day.  I've been on tarceva for over 3 years and have had to lower dose a couple of times the first year.  But I am also now in remission due to the tarceva and NO mets anywhere.  So it is worth the extra effort to deal with it if she can. Don't be surprised after the next scan if they tell you there is shrinkage.  With those side effects, I'm betting there would have to be.  My first scan after starting tarceva showed a 30%+ reduction.  Good luck, keep your faith, and may God Bless.My mother was diognosed in Feb09 with NSCLC. She was a smoker for 40 years and has quit for almost two years now, she also has diabetes. She was given the "cyber-knife" treatment in May09 and in June was told the treatment was successful and tumor had shrunk. Now in Feb10 a PET scan showed that the original tumor had grown slightly and a new spot had developed on her other lung she has now been ordered Tarceva and potentially intravenious chemo. I just was wondering if anyone out there has had a similar experience and what our chances are?  Cancer is a very intimidating word both her and i are frightened and would like some information. cancersucks25 Fri, 12 Feb 2010 00:00:00 GMT It sounds like the tarceva is working for your mom with those side effects.  The side effects will lessen over time.  Your onc can lower the dose until the side effects calm down if they become unbearable, but I would try to avoid that if I could.  It's not that long until the next scan.  One thing about tarceva, it crosses the blood/brain barrier and helps prevent brain mets.  Most other chemos do not do that.  This is a big plus for your mom since she has already experienced brain mets.  That's probably one of the reasons her doctor put her on it in the first place.  After the next scan, and you know definitely that the tarceva is working, and if the side effects are still sort of harsh, then ask about lowering the dose to 100 and working back up to the 150/day.  I've been on tarceva for over 3 years and have had to lower dose a couple of times the first year.  But I am also now in remission due to the tarceva and NO mets anywhere.  So it is worth the extra effort to deal with it if she can. Don't be surprised after the next scan if they tell you there is shrinkage.  With those side effects, I'm betting there would have to be.  My first scan after starting tarceva showed a 30%+ reduction.  Good luck, keep your faith, and may God Bless. Chessie Fri, 12 Feb 2010 00:00:00 GMT My mother in law was diagnosed January '09 with stage IV lung cancer.  She did chemo and radiation which worked great, the she developed mets to her brain.  She did radiation for that which shrunk the lesions, but her original tumors began to grow back.  She started Tarceva 150mg in December.  She is not liking the side effects, she has the rash on her face which has been well controlled with meds, diarrhea, peeling hands, and significant decrease in energy.  Do these side effects subside over time?  Her doc (and me too) would like her to stay on the full dose until her scans next month because if the tumors continue to grow he'd take her off completely.  But if they do and she's only on a partial dose he'd just increase it again.  Any insight would be greatly appreciated.  She's very young, only 56.  We'd love her to be around for a long time to come.  Especially for her little grandchildren.  Thank you, God bless you all in your journeys! stronginthelord Thu, 11 Feb 2010 00:00:00 GMT tarceva comes in pill-form to be taken one hour before you eat, at the same time,every day,with a full glass of water.  your oncologist will dictate the dose to be taken. I am an 85 yr. old, 17 yr. survivor of multiple cancers ,and have been on tarceva for 4 yrs now, because I have had  stage4 lung-cancer since 2004. my dosage is 150 mgs. there are many cyclical side-effects, but my quality-of-life is good, and I recommend exercise & a positive attitude...LOVE & PEACE! Lenny_Peacenik Wed, 10 Feb 2010 00:00:00 GMT Brenda, what type of cancer does your husband have? Thanks Kathy KathyJH Tue, 09 Feb 2010 00:00:00 GMT My 87-year-old Mother was diagnosed with stage 4 NSCLC in July though she has never smoked nor has anyone in our family or anyone she worked with.  She has been taking Tarceva since mid-July.  There is no way she could have paid for this medication, nor could my sisters or I.  There is a drug foundation that pays for almost all the cost, based on one's income.  It comes to her door via MedfusionRX in Birmingham, AL.  Mother is doing well, feels better than she felt at diagnosis.  She  has had the rash, for which we are thankful since from all indications the rash means the Tarceva is working.  She has ocassional nausea but only one day of vomiting so far. Her apetite is not very good however so weight loss is a problem with her.  The doctor has said Tarceva is slow-acting so they will not do another petscan until November, wanting her to be on it longer than 3 months before testing and so Medicare will pay for the test.  Thank you all for your info via these messages.  It has been the best source of personal-use information for us all. May God bless each of you and your loved ones dealing with cancer.  He is the Great Physician! TexasK Wed, 16 Sep 2009 00:00:00 GMT My cancer has spread to NSCLC stage 4 brain/bones/other parts; have had more radiation and chemo.  Now the doctor recommends the tarceva, which I will receive by mail from PrecisionRX.I am praying this puts a stop to the spread---I need more years to get my sons off into the world.Are the side effects so awful that we want to give it up?Thanks for all of the information. msdebsm Sat, 29 Aug 2009 00:00:00 GMT  On 4/18/2005 Drmort wrote:My wife will be starting on Tarceva. Medicare doesn't seem to pay for it as it had for her previous chemo drugs. Has anyone had experience with getting Tarceva at a reduced cost?I am on Medicare and have been on Tarceva for 2 mos. Medicaare pays for it under part B.  The pharmacy is Greater Sacremento Pharmacy and it is sent to me via FedEx.  your wife's Dr. must contact the pharmacy directly.God bless and NEVER give up, Barb Grizabella Mon, 17 Aug 2009 00:00:00 GMT  On 4/18/2005 Drmort wrote:My wife will be starting on Tarceva. Medicare doesn't seem to pay for it as it had for her previous chemo drugs. Has anyone had experience with getting Tarceva at a reduced cost?Dr. Mort:My son has Ewing's Sarcoma and since Tarceva is not FDA approved for that, it was denied.  I have gone through multiple appeals and on the 4th one, it was finally approved.  Genentech (the manufacturer) also has a patient assistance program that may be able to help if you meet financial criteria, and they were very nice.  I had an appeal also filed with them, but when insurance finally came through, I pulled it back.  Be relentless, there are solutions, but they don't come without the fight.   Keep the faith!Signed, One who knows your pain.  Cassi Thu, 11 Jun 2009 00:00:00 GMT Thank you for your most informative message of 5/11/09.  I just happened to come across it in my research of tarceva, which i will begin taking the end of this week.  Have been in treatment for stage 4 nsclc for a year, including radiation and 2 chemos previously, the last one, alimta did nothing at all & the cancer spread alarmingly while i was on it!  Last chemos on alimta was may 28th.  The dr. Learned thru a ct scan that it was spreading!  I also had major blood clots diagnosed on april 30, 09 for which i've been taking blood thinners, breathing became so difficult my dr. & i thought i was allergic to coumadin.  Not so...results of ct scan showed the rapid growth of cancer had spread to left lung , hence the breathing problems (it also has a large blood clot) as well as over an inch growth in adrenal gland tumor over kidney.   So...........thinking there were no alternatives available i made my peace with my transition    -   then my dr. Told me i could begin taking tarceva (life line?)  Hopefully it will work for me as it has for many other people and i can "stick around" a while yet - not really ready to go.  I have a dear family (i'm a widow.)Also learned today that i'm eligible for assistance thru chronic disease fund and my co-pay is $25.00 month.God is good....and i have kept my positive attitude all along!Sorry this is so long, thanks again for posting.  Ginny  On 5/11/2009 DadNSCLC wrote:Not sure if this is a response to 1 email or all on the message board.My Dad has Stage IV NSCLC and is terminal.  He has been on Tarceva for approximately 3 months;  after the 1st 2 months he had a scan and it appears to be working and keeping the cancer at bay, for now.He has diarahhea (and takes over the counter medicine daily for this), along with the rash (looks like really bad pimples) and it is on his face, head, forearms, chest, etc.; from the hip down he seems to be pretty clear.  He has naseau and vomiting on average of once a week; his appetite comes and goes but overall he is not losing any weight.  The medicine, in combination with the cancer, does make him very tired and unstable.  He has found taking the medicine at night before he goes to bed sees to work best as his appetite does not get affected during the day from taking the medicine.There is assistance for payment; if you have the medicare prescription card, the first 2 months require a hefty payment by the patient as you fall into medicare's "doughnut hole" and need to come out of pocket I beleive $4500; after that, 95% of the medicine is paid for by medicare which will help substantialy.  Ask your doctor or search on line, but there is assistance out there if you can meet the financial criteria (either through the pharmacetucial companies, cancercare.org, heathwell foundation, chronic disease fund, etc.With regards to other chemotherapy's, I suggest contacting AARP if you do not have supplemental insurance and they will approve you, with a 3 month preexisting condition.  This will help cover the remaining 20% that medicare doesn't pay; whether it be for Dr. visits, scans, iv chemotherapy, etc.Hopes this helps.  ginny_b_1 Wed, 10 Jun 2009 00:00:00 GMT  On 4/18/2005 Drmort wrote:My wife will be starting on Tarceva. Medicare doesn't seem to pay for it as it had for her previous chemo drugs. Has anyone had experience with getting Tarceva at a reduced cost?My Mother just started Tarceva about a month ago she has medicare also. Her Dr. had a company that would help her cover her co-pay if she qualified. ( of course she did) the guidlines have a wide range of incomes you may want to talk to your Dr or financal advisor at the cancer center that your wife is going to they would be the best ones to help with finding some one to help cover the out of pocket expence. babygirl98us Fri, 22 May 2009 00:00:00 GMT  On 4/16/2007 Wanttohelp wrote:Hi to u too:Contact:  GENENTECH  INC                               1 DNA WAY                                          SOUTH SAN FRANCISCO                   CA   94080-4990                  Phone:  650-225-1000                         Fax:  650-225-6000             They make and distribute Tarceva.  I've had lung cancer for 10 yrs. and am still here.  I've been on Tarceva for 3 months now.  Too soon to tell if it's  working but I should know in a few weeks.  I hope this info helps and I'll put mom in my prayers.  IT DOES HELP.  Hang in, there is help.Dorothy O                                              Wow, 10 yrs, congratulation... Could you tell me what stage you were in at the first time you discover it?  God bless you,Take care,Victoria CancerStrike2 Thu, 21 May 2009 00:00:00 GMT  On 4/19/2005 Leslie wrote:Sorry. I'm not responding directly, but I haven't figured out how to post a new message. My husband has been on Tarceva for four weeks. He is experiencing nausea and fatigue. We are trying to decide when he should get a scan to see if it is helping. Our thinking is to wait until he is on it for two months. Does anyone have specific information about this? Thanks. Hi Leslie, The usual scan after starting tarceva is after 3 months.  That will give them a good picture as to whether or not the tarceva is working.I have blood work every 30 days and a PET scan every 3 months.  I've been doing this for 2 1/2 years now.  Tarceva has given me a good quality of life.  It is truly a God send for me.I pray that it works as well  for your husband.God Bless Chessie Mon, 18 May 2009 00:00:00 GMT Hi my dad has been on it for 2 years, he did get the rash(not too bad) and some diarreha some times though.They had to wait a month at least for him they did catscans and MRI to tell if it was shrinking and if they see that they will continue,Something that i have read is you have to wait at least 2 hours after you eat to have the pills that way your soide effects are not badGood luck to you Elona Mon, 18 May 2009 00:00:00 GMT Hi,My dad had medicaid(emergency coverege only) and he gets it for free, make sure you call them tell and your situations, there is a limit of 70,000 income a year,to get it for free and should have tried at least a chemotherapy(but not always my dad never did chemo)The phone nr is:1800-530-3083 Elona Mon, 18 May 2009 00:00:00 GMT Not sure if this is a response to 1 email or all on the message board.My Dad has Stage IV NSCLC and is terminal.  He has been on Tarceva for approximately 3 months;  after the 1st 2 months he had a scan and it appears to be working and keeping the cancer at bay, for now.He has diarahhea (and takes over the counter medicine daily for this), along with the rash (looks like really bad pimples) and it is on his face, head, forearms, chest, etc.; from the hip down he seems to be pretty clear.  He has naseau and vomiting on average of once a week; his appetite comes and goes but overall he is not losing any weight.  The medicine, in combination with the cancer, does make him very tired and unstable.  He has found taking the medicine at night before he goes to bed sees to work best as his appetite does not get affected during the day from taking the medicine.There is assistance for payment; if you have the medicare prescription card, the first 2 months require a hefty payment by the patient as you fall into medicare's "doughnut hole" and need to come out of pocket I beleive $4500; after that, 95% of the medicine is paid for by medicare which will help substantialy.  Ask your doctor or search on line, but there is assistance out there if you can meet the financial criteria (either through the pharmacetucial companies, cancercare.org, heathwell foundation, chronic disease fund, etc.With regards to other chemotherapy's, I suggest contacting AARP if you do not have supplemental insurance and they will approve you, with a 3 month preexisting condition.  This will help cover the remaining 20% that medicare doesn't pay; whether it be for Dr. visits, scans, iv chemotherapy, etc.Hopes this helps. DadNSCLC Mon, 11 May 2009 00:00:00 GMT My husband has been on Tarceva for three weeks. He is having the same nausea and fatigue symptoms.   After 2 weeks, he was so fatigued, he had to stop going to work.  He has to make himself eat.Our doctor recommends CT scans every 10 weeks.  My husband just had one four weeks ago.  Insurance won't pay for it, if we get one sooner than 10 weeks. Hope this helps. jawjagal Sun, 19 Apr 2009 00:00:00 GMT Hi Leslie,I have been taking Tarceva since January 6,2009. I will have my first ct scan next week and on the 22nd of April I will get either the good or bad news.  The Tarceva has treated me fairly well, I have gotten the rashes and my hair is shedding at the rate of a handfull a day for the past 2 weeks, gettting really thin, I tire easier than I used to but think I am doing well, I will pray for your husband and please wish me luck also.  I will e-mail you by the 24th of April with the news.  God Bless. bonnaj Sun, 12 Apr 2009 00:00:00 GMT On 9/7/2005 Lynns Mom wrote:My 84 yr. old Mom also has stage IIIB NSCLC-this is her 3rd year of chemo. She was started on Tarceva recently for her lung and liver met. I am interested to hear that your Mom has had good results from the med. My Mom had to cut back to 100 mg every other day because of bad diarrhea and rash on face, neck and scalp which was painful. The rash has improved with a steroid cream. The diarrhea is not pleasant. She's having bad abdominal cramps right now. She's taking lomotil which helps. Does anyone have info on how long the diarrhea lasts and any food suggestions to diminish it? Thanks. This is the best web site I have found so far. I am an RN and care for pts. where side effects of meds differ. All the drug sites in the world give you some info but it's only statistics and not real stories. Every person reacts to medication differently. I look forward to learning from all of you. CarlaJane Sun, 08 Mar 2009 00:00:00 GMT VA medical centers throughout the country will provide Tarceva to veterans - without exception - provided that the drug is medically necessary. Your civilian oncologist simply needs to contact the local VA medical center and speak to the head of the oncology unit and explain the need for you to have it. The head of the oncology unit and the pharmacist for the oncology unit are both required to approve the use of Tarceva as it is a non-formulary drug. Do not be thrown off by the term "non-formulary"... it simply means that it is not routinely dispensed. Do not confuse this with not being available. I live just outside of Washington DC and received Tarceva from the VA medical center there. I did so for 10 months - until the drug stopped working for me. Approval and medical justification from both the head and the pharmacist of the oncology unit is required because of the cost of the drug - which is roughly $3,500 to $5,500 per 30 day supply. My cost was $0 because my cancer was service connected. You may end up having to pay $8 per refill. Small price to pay if it buys you 6 months to a year or more of life. Hang in there. You served. Thank you for your service. Now let the folks at the VA serve you. Four_Time_Lung_Cancer_Survivor Tue, 24 Feb 2009 00:00:00 GMT I am not finding a VA Medical Center that will provide Traceva. It seems to me if one in this United States provides it , they all should.I keep getting told it is not on their formulary.  I wish someone would tell me what VA Medical Center they are getting  Traceva from.  Or at least the state.Government officials are not the easiest people to work with sometimes.Thanks  I am running out of time here. clf107 Wed, 18 Feb 2009 00:00:00 GMT  On 10/24/2008 Four Time Lung Cancer Sur wrote:Pat, I am a veteran and VA provides me Tarceva and to other veterans. You just have to ask for it. It is considered a non-formulary drug but will be approved if he can demonstrate that he needs it. For that purpose, all he will need is a prescription from his current physician. He will need to take this to the VA and have the head of Oncology approve the disbursement. He will be required to physically go to the VA once a month so their doctors can assess his progress.  I noted a message on the forum about receiving Cancer Drugs from VAI receive Heart meds from VA. I have been diagnosed with Melanoma Lung Cancer and am worried about paying for them.  I do not know which ones the Dr. will use yet.  She said Tarceva and/or Temodar.  I don't start treatment until Feb. 20. I have not contacted VA yet as the Dr. will have to contact them also.You might not want to do it but would you tell me the state you live in. Different VA officials don't always tell you the same thing. (when I first asked about heart medicine yrs. ago the first person said it was too much paperwork and wasn't worth it. So I forgot it for for a few months then tried again with a different official and had success.Thanks-- I am from central Nebraska clf107 Tue, 03 Feb 2009 00:00:00 GMT Janice:  No time frame given to me. I was diagnosed about a month ago.Treatment to start Feb.20 is all I know. I had lung cancer about a year ago and I took  treatments in a vein.  It has recurred.No one seems in a hurry to treat mine now. For what reason I don't know. It is Melanoma.Do happen to know what those Tarceva pills cost?  I have Medicare but don't know if it covers that. If they are as expensive as I think they are and I have to purchase them, I will not do it.  I am 77 yrs old and will not spend my life savings on my cancer. My estate I want to go to my wife and children. This health care, esp. cancer is getting to be too big of a business. Chas. clf107 Mon, 02 Feb 2009 00:00:00 GMT  On 2/11/2008 janicemarie wrote:Hi, You said you have stage four lung cancer, when were you diagnosed?  my mom is at stage four and has tried three different chemos and is not responding.  the doctor wants her to finish up this last chemo and then try tarceva.  did anyone give you a time frame of life expectancy at stage four?  we are so scared that she will not respond, but I have a good feeling about Tarceva.  thank you and wish you well, anxious to here from you   JaniceThank you to all for this message board ....  my father starts Tarceva tomorrow and I'm extremely overwhelmed by all of your courageous & personal stories.  They truly give us hope.  My dad had surgery in Nov 2006 to remove part of his right lobe and luckily, was in remission until June 2008.  He then had many rounds of radiation, which unfortunately didn't help.  After 5 chemotherapy treatments with no improvement,  his oncologist has now suggested Tarceva. Janice, how is your mom doing? Did she respond well?  Like you, I feel very hopeful that Tarceva might help him regain strength, minimize cancer symptoms and extend good quality living.  My dad is a 'young 84' who  still has lots of living to do!Like most of you, we've also done lots of research. Information is power, isn't it?  Time and time again, the name Flor-Essence comes up as a good quality alternative therapy.  Has anyone had experience with this while on Tarceva? Always_hopeful Tue, 27 Jan 2009 00:00:00 GMT Hi everybody. I'm new of this forum and I'm from Itlay.I have a question about Tarceva. If you are a patient that use Tarceva, can you assume food in association with curcumin or spices anticancer (like rosemary,thyme, etc. )? Are there any contra for the association of Tarceva and Curcumin? Thanks very much. My best wishes,Marco Pieramonte Thu, 11 Dec 2008 00:00:00 GMT Pat, I am a veteran and VA provides me Tarceva and to other veterans. You just have to ask for it. It is considered a non-formulary drug but will be approved if he can demonstrate that he needs it. For that purpose, all he will need is a prescription from his current physician. He will need to take this to the VA and have the head of Oncology approve the disbursement. He will be required to physically go to the VA once a month so their doctors can assess his progress. Four_Time_Lung_Cancer_Survivor Fri, 24 Oct 2008 00:00:00 GMT My Dad has been taking Tarceva now for about 2 wks. He started out great but now has the rash assoicated with the "pill" as one of the side effects...he is starting to get a bit discouraged and frustrated and understandbly so. Let me know if I can answer any more of your questions. We just heard on the news that they are trying a new thing with Vitimin C and it seems to be working. Something about taking injections of vitimin C over an extended period kills the cancer cells and a few have been cancer free now for over 10 yrs. Hope they get that going that w/d be nice...Good luck to you and yours and God Bless. Lisa Hammer lisashinn Thu, 28 Aug 2008 00:00:00 GMT  On 3/30/2005 Nanlynn wrote:Brenda -- hello; My husband has been taking tarceva for about two months. He did have some diarrhea with it but it did stop. He did have nausea and vomiting with it too. That comes and goes. It is a pill taken daily. My husband is on the 150mg dose -- and he never did get the rash that a lot of patients complain about. He does have lung cancer stage 4 and was diagnosed 18 months ago. Wish your grandmother well -- 93 years old -- how wonderful -- tell her to keep fighting!! God bless, Nancy C.Nancy, My mother, who is 58, was also diagnosed 18 months ago.  She had her left lung completely removed, followed by chemo treatments that put her into remission for 12 months.  Her cancer is now in her remaining lung and and she just stopped taking chemo, due to severe nausea.  Her Oncologist has prescribed her Terceva and she will begin taking it soon.  How long did your husband's nausea and vomiting last?  Blessings-Becca in TN. beccatn Tue, 01 Jul 2008 00:00:00 GMT RE:  HELP GETTING TARCEVA FOR FREE AND ASAP My mom has NSCLC IV diagnosed 13 months ago.  It has spread to bone, thyroid & liver.  She had carboplatin/taxotere chemo for 6 months, then gemzar for 4 months.  Gemzar did not work and so the doc put my mom on Tarceva.  We just got the meds delivered today. On May 23 she was given only 2 months to live, and the Tarceva was prescribed then.  We have had numerous hurdles in getting this drug.  If you need assistance paying for it, call Genentech and they will refer you to a charity that can help.  That means that the people from the charity will call you and send you an application packet that you fill out with insurance info, bank statement, etc.  We sent it back and rec'd a decision right away and were approved for $10K per year.  The charity name is Cancer Care.  Here's the catch... don't try to get the drug through your local pharmacy.  We did and that's why it took so long.  The way Cancer Care pays for the drugs is the old-fashioned way: by check in the mail.  There are virtually NO local pharmacies (even national chains) that will accept this type of "third party billing."  The Cancer Care rep will ask you about the pharmacy you use, so just tell them to use whatever pharmacy they can process it through.  Apparently Walmart's mail order (called Walmart Specialty Pharmacy) is on board with this program.  Once they get the Rx faxed to them, they process it and overnight the drugs at no cost to you.  The charity picks up the entire tab.  The first month's supply would've cost my mom $2802.00 and the next dose will cost her $3500 because this drug put her in her "gap" with the AARP Prescription plan.  So we have gone 3 weeks trying to get this done.  So I really, really hope this helps someone else avoid the pitfalls of working to get these meds as fast as possible.  Also, WM pharmacy called me about 15 mins after the drug arrived to confirm that it was rec'd and to go over my mom's medical history.  It was a nurse who called and she was quite knowledgeable and friendly.  If she didnt' know an answer to my question, she put me on hold while she consulted a pharmacist to get the answer.  I listed mom's conditions, medications, and answered lots of questions.  It took about 10 mins total.  Then about 30 mins later the nurse called me back and told me they'd identified a possible interaction problem with Tarceva and one of mom's other drugs (coumadin).  I was impressed and appreciated how this was handled.  I now have a call into the doc's office to see if that is really going to be a problem.   I will post again on progress, etc.  Many people plan to post updates but then it just doesn't happen.  I have gotten so much from all the personal stories (and questions) that I will make my best effort to contribute in any way I can.Thank you all for the useful info that is so hard to find!  JeninBama Tue, 17 Jun 2008 00:00:00 GMT  On 4/19/2005 Leslie wrote:Sorry. I'm not responding directly, but I haven't figured out how to post a new message. My husband has been on Tarceva for four weeks. He is experiencing nausea and fatigue. We are trying to decide when he should get a scan to see if it is helping. Our thinking is to wait until he is on it for two months. Does anyone have specific information about this? Thanks. Started onTraceva June 11, 2008 at noon stage 4 nscl  lung cancer this is day 4 and side efects our still lots of fatigue and coughing hard and i get some blood coming up sometime to.Yes i can you tell about our Hematology/Oncology Center  at 301 N. San Jacinto st.Hemet Ca.my  Dr. Sehgal gave us a 2 months pre-markcalender mark with a blood test at Lab the 19 of June and another July the 3rd then apointment at Dr. office July the 8rd to give the fineing if any at that time.  ather that more  blood test every 2 week for testing.and more office visit with Doctor to see if any changes.a fallow up to his office to if their any improvement or shrinking or changes maybe  next a MRI test and ct scan to check . but said it will a long time maybe 2 to 3 months for some people to see any improvement and will be on Traceva maybe a year or more.THANK YOU if you got any help for me... God Bless.... Anitaany reply will help me THANK again boopboopdoop Sat, 14 Jun 2008 00:00:00 GMT I find that 1% hydrocortisone plus 12 moisturizing agents and aloe, an inexpensive, over the counter cream, applied once a day to the areas that get the rash, works quite well to control the rash. It's a generic equivalent of Cortizone 10 + 12 moisturizers and aloe, and it's about half the price of the brand name stuff. (Actually, it's the same price, but you get twice as much in the tube.) I'm having a huge problem with the diarrhea even though I take Imodium AD. Imodium AD either doesn't work at all, or it works so well that I get constipated and have abdominal cramps. I also get aches and pains which don't respond well to Tylenol, and I'm weak, tired, and sleepy all the time. I'm open to suggestion here. Henry On 9/7/2005 Lynns Mom wrote:My 84 yr. old Mom also has stage IIIB NSCLC-this is her 3rd year of chemo. She was started on Tarceva recently for her lung and liver met. I am interested to hear that your Mom has had good results from the med. My Mom had to cut back to 100 mg every other day because of bad diarrhea and rash on face, neck and scalp which was painful. The rash has improved with a steroid cream. The diarrhea is not pleasant. She's having bad abdominal cramps right now. She's taking lomotil which helps. Does anyone have info on how long the diarrhea lasts and any food suggestions to diminish it? Thanks. This is the best web site I have found so far. I am an RN and care for pts. where side effects of meds differ. All the drug sites in the world give you some info but it's only statistics and not real stories. Every person reacts to medication differently. I look forward to learning from all of you.  henry8 Wed, 14 May 2008 00:00:00 GMT My 59 year old sister has just been diagnosed with lung cancer that has metastasized to her brain and spinal cord (and possibly to other areas of her body).  The doctors say she cannot beat it because the cancer is too advanced.  They are calling it adenocarcinoma.  She suffers from severe headaches because the spinal fluid puts pressure on her optic nerve.  They are considering putting a shunt in to reduce the build up of fluid.  She is getting radiation treatments to the brain and taking Tarceva daily.  Has anyone else experienced these symptoms?  I am concerned that the surgery to put in the shunt will advance the growth of the cancer.  If any of you know anything about this, please advise me.  Also, how long can I expect it to take before she begins to experience the side affects of the drug Tarceva?  I have been reading about some of your successes with this drug and am praying my sister still has a chance at life. sisterofmine59 Fri, 11 Apr 2008 00:00:00 GMT  On 3/30/2008 PaulC2 wrote:I've been taking Tarceva for for nearly five months, and have come up with some things to deal with the side effects I've had.For the rash: I take a daily low-dosage antibiotic (in my case, doxycycline hyclate), and no longer need to use steroid creams on my face.For the diarrhea: I've greatly increased my intake of dietary fiber (in my case, raisin bran, bananas, apples, and whole-grain breads) and cheese. Be sure to check with your doctor -- bananas interact with some diuretics, and cheese interacts with some heart medications. Behaviorally, I've learned to take frequent bathroom breaks whether or not I feel any need. I've also learned to pack my briefcase with a spare roll of toilet paper, a jar of wet-wipe pads (witch-hazel for me), and two changes of underwear. For the gas: I've tried to develop a sense of humor, and my family has learned to either just carry on if I'm embarrassed, or lovingly tease me if they think I'm up for it. For work, or other long periods in public, I take activated charcoal. (But check with your doctor, as it can interfere with absorption of some kinds of medication.)  Thanks for the advice. We now have a prescription for something to help with the diarrhea and she is starting to actually try some solid food again. One thing I am concerned about is Mom does not have a rash. I have heard this is a sign that the tarceva is working. She goes April 10 for her next scan. I hope we get a good report. Thanks again. popcorn Tue, 01 Apr 2008 00:00:00 GMT I've been taking Tarceva for for nearly five months, and have come up with some things to deal with the side effects I've had.For the rash: I take a daily low-dosage antibiotic (in my case, doxycycline hyclate), and no longer need to use steroid creams on my face.For the diarrhea: I've greatly increased my intake of dietary fiber (in my case, raisin bran, bananas, apples, and whole-grain breads) and cheese. Be sure to check with your doctor -- bananas interact with some diuretics, and cheese interacts with some heart medications. Behaviorally, I've learned to take frequent bathroom breaks whether or not I feel any need. I've also learned to pack my briefcase with a spare roll of toilet paper, a jar of wet-wipe pads (witch-hazel for me), and two changes of underwear. For the gas: I've tried to develop a sense of humor, and my family has learned to either just carry on if I'm embarrassed, or lovingly tease me if they think I'm up for it. For work, or other long periods in public, I take activated charcoal. (But check with your doctor, as it can interfere with absorption of some kinds of medication.) PaulC2 Sun, 30 Mar 2008 00:00:00 GMT My 66 yr old mother was diagnosed a year ago with stage 4 lung cancer and colon cancer. She has had two types of chemo and now has been put on Tarceva a month ago. She has not had any rash, but has had bad diarrhea. Does anyone know how long this will last? She eats very little because she never knows what will start the diarrhea again. Otherwise she feels fine. Any info on this would be helpful. Thanks!! popcorn Thu, 20 Mar 2008 00:00:00 GMT  On 9/7/2005 Lynns Mom wrote:My 84 yr. old Mom also has stage IIIB NSCLC-this is her 3rd year of chemo. She was started on Tarceva recently for her lung and liver met. I am interested to hear that your Mom has had good results from the med. My Mom had to cut back to 100 mg every other day because of bad diarrhea and rash on face, neck and scalp which was painful. The rash has improved with a steroid cream. The diarrhea is not pleasant. She's having bad abdominal cramps right now. She's taking lomotil which helps. Does anyone have info on how long the diarrhea lasts and any food suggestions to diminish it? Thanks. This is the best web site I have found so far. I am an RN and care for pts. where side effects of meds differ. All the drug sites in the world give you some info but it's only statistics and not real stories. Every person reacts to medication differently. I look forward to learning from all of you. I know your posting was some time ago. My 78 year old mother has been on Tarceva for over a year. The side effects were managable until recently. The abdominal cramps and severity of diarrhea are intense.  How did you manage these side effects for your mom? Scouter Wed, 19 Mar 2008 00:00:00 GMT  On 5/7/2005 Daywoo wrote:I have gone through the break out stage, and then the ends of my fingers began to split. It has been 4 months and I feel fine. However, a couple of weeks ago, my hair began to break off and fall out. It is now very thin, normally I have extremely thick hair. I have been on 150mg and last week the doctor said I could now go down to 100mg to see if the hair shedding would stop. I will not have a CT Scan until June 2nd, I will let everyone know how it goes. I have stage IV Lung Cancer and have been beating the odds for 4 years. My radiation doctor says the latest spot could be radiated, so if the Tarceva does not get rid of it or shrink it dramatically. I will have more radiation. I originally had 6 months of chemo and then 37 radiation treatments, it was gone for about a year, then 6 more months of chemo and it was gone again. Good Luck to AllI am so happy to read that you've been beating the odds for years. My mom is currently taking Tarceva for lung cancer. She never was a smoker. Please keep my mom in your prayers and I will say a prayer for you. Thanks for posting, This board gives us hope. Maria  Squeeky Wed, 12 Mar 2008 00:00:00 GMT Hi, You said you have stage four lung cancer, when were you diagnosed?  my mom is at stage four and has tried three different chemos and is not responding.  the doctor wants her to finish up this last chemo and then try tarceva.  did anyone give you a time frame of life expectancy at stage four?  we are so scared that she will not respond, but I have a good feeling about Tarceva.  thank you and wish you well, anxious to here from you   Janice janicemarie Mon, 11 Feb 2008 00:00:00 GMT My dad is going to be starting tarceva. He gets his meds from the VA. They do not have this drug.  His doctor is filling out an application with Merck for an ACT Fund which gives the med. to people who qualify. He got his Emend from them also, for free. pat61162 Fri, 08 Feb 2008 00:00:00 GMT i am 57 and has stage 4 lung cancer. i was diagnosed in jan this year. i recently had 18 rounds of radiation which shrunk my tumor but since then there is a spot on my spine and inmy lymph i have recently started taking tarceva and have the rash. i haven't had any diarreah and hope i dont. i go back to my oncologist on the 23rd of nov. i guess we will have test set up to see if tarceva is doing me any good. joicie Sun, 11 Nov 2007 00:00:00 GMT  On 8/16/2007 Elona wrote:Hi,I cant tell you what i felt when i read your message.This is my first time in this site and is really good, my dad is diagnosed with NSCLC and the shipment of tarceva is coming tomorrow at no cost to him from Genetech so that was great news.Reading that you have been with NSCLC for 10 years is good news to me i hope happens to my dad too, he is 69 and i hope lives a long life, even though the doct dont seem to think so, he did good after radiation has shrunk a lot, but he has in on the spine so that worries them, but for now is inactive.I dont know i keep hoping he will live long time with that.I wish you the best and keep your spirit upThank you to you all and God Bless you all Your  message was very inspiring to me. I was diagnosed with stage 3b in January 2007 having had 26 treatments with a trial drug Erbutux, 7 weeks 5 days a week radiation and 3 chemo treatments. With all this you wonder what's next. Currently I'm on Tarceva and dealing with the rash, but if it means life I will tolerate it. My last pet scan on 10/22/07 showed no active cancer and the lung tumor is shrinking. Your having been with NSCLC for 10 years is great news to me and I sure wish you continued success. God Bless dwighth Thu, 25 Oct 2007 00:00:00 GMT My husband (49 yrs old) has NSCLC stage IIIB and started Tarceva about 2 weks ago.  No sign of improvement yet.  One of his major symptoms (it started before taking Tarceva and hasn't changed) is that he perspires.  He gets drenched in his sweat and has to change clothes and sheets 7 - 8 times a day.  Anyone has similar experience?  Overall, he is very weak and under a lot of pain.  Oceanview Fri, 12 Oct 2007 00:00:00 GMT Try this website, it gives a list of websites of organizations that might help pay. http://www.cancer.gov/cancertopics/factsheet/support/financi joecool1967 Wed, 03 Oct 2007 00:00:00 GMT  On 4/18/2005 Drmort wrote:My wife will be starting on Tarceva. Medicare doesn't seem to pay for it as it had for her previous chemo drugs. Has anyone had experience with getting Tarceva at a reduced cost?My own experience was that Medicare doesn't cover Tarceva, but my Secure Horizons insurance covered 2/3 of the cost. So, at our pharmacy, a month's supply of 30 150 mg. tablets cost $3,962 and I paid $1,687. However, if you contact Genentech, maker of Tarceva, they may put you in touch with a charity that will help defray the cost. Check out Genentech's website, as well as Tarceva's. Call Genentech's Single Point of Contact (SPOC) at 888-249-4918 or, alternatively, call the SPOC's Alternate Funding Specialist, Bert Darrell, at (800) 240-1224.  classical Thu, 06 Sep 2007 00:00:00 GMT  On 4/19/2005 Leslie wrote:Sorry. I'm not responding directly, but I haven't figured out how to post a new message. My husband has been on Tarceva for four weeks. He is experiencing nausea and fatigue. We are trying to decide when he should get a scan to see if it is helping. Our thinking is to wait until he is on it for two months. Does anyone have specific information about this? Thanks.What does your oncologist recommend? I would think he or she would be the expert on this.  classical Thu, 06 Sep 2007 00:00:00 GMT  On 3/30/2005 Brendals wrote:My 93-yr-old grandmother is soon to start Tarceva. I have appreciated this message board so much because it's the only place we've been able to get any real information. She is using the postings to have a meaningful discussion with her doctor next week. She's down to 80 lbs and has real misgivings about starting Tarceva due to the associated diarrhea. But the consensus is that she might as well try it. She can always stop. Several postings have mentioned reducing the dose from 150 mg to 100 mg or 50 mg, so she's wondering how the dose is reduced. Her question is: what form does Tarceva come in? Pills? Liquid? BrendaTarceva comes as a pill, in 150 or 100 mg as prescribed by your oncologist, whom you or your grandmother should talk to if she wants a reduced amount. The pill itself doesn't seem amenable to splitting, and I wouldn't try it. classical Thu, 06 Sep 2007 00:00:00 GMT Hi Brenda,My 91 year old Mother has been on Tarceva for the past year and is doing extreemly well.  Her side effects have been minimal, mostly the skin rash (like measles) followed by dry flakiness.  On rare occasions she has mild diarrhea, very, very infrequent nausea and no vomiting iat all.  She has had some thinning of her hair, but no outright hair loss.  Her quality of life has returned, her tummor markers are back to normal range, and on her CT/PET scans, the tumors are no longer visable.  So Tarceva is a real "winner" in our book !!Last August, Mom was diagnosed w/ cancer that had metastasized to her liver and bone (spine, ribs, etc) and was given little hope for surivval beyound 3 months (if that). Despite two biopsies of the original lesion in her lung, they weren't able to get enough tissue to determine the cell type.  She is a survivor (8years) of colorectal cancer.  So the picture was mixed re: whether this was a recurrence of her colorectal cancer or primary lung cancer that had spread..In any case she was begun on Tarceva 100 mg. daily last August and her response has been nothing less than "miraculous."  Within the first month her temperature returned to normal.  Within the first 6 weeks her bone pain deminished and then left entirely.  Her tumor marker began declining about the 3rd month and has returned to normal levels at her last appt. in July.  She has regained her strength, energy and appetite (enough to return to her volunteer work and sociall activities).Genentech was wonderful in assigning her a "care manager" who coordinated her insurance benefits so that our monthly costs are minimal.So please tell your grandmother, that if she is inclined to give this medication a try, it may prove to be very helpful.  I wish you both the very best.  MaryeT Thu, 30 Aug 2007 00:00:00 GMT Hi,I cant tell you what i felt when i read your message.This is my first time in this site and is really good, my dad is diagnosed with NSCLC and the shipment of tarceva is coming tomorrow at no cost to him from Genetech so that was great news.Reading that you have been with NSCLC for 10 years is good news to me i hope happens to my dad too, he is 69 and i hope lives a long life, even though the doct dont seem to think so, he did good after radiation has shrunk a lot, but he has in on the spine so that worries them, but for now is inactive.I dont know i keep hoping he will live long time with that.I wish you the best and keep your spirit upThank you to you all and God Bless you all Elona Thu, 16 Aug 2007 00:00:00 GMT  On 4/21/2007 Jackie1956 wrote: On 4/21/2005 Dzimm wrote:You can call the Tarceva Company at 888-530-3083 and they have a foundation that will help with the cost. They totally covered the cost for my mother. I wish you the best.How did they help you? My mom is 70 years has lung cancer which has spread to her bones,other organs.Her Dr put her on tarceva in January 2007.She has now went into remission and the cancer has stopped growing,her blood count is finally going up and she is out of her Tarceva,her insurance is all used up just in two paying periods.She has a $6000.00 a year cap.She lives on 1100.00 a month SS and has other bills to pay and after that leaves her with about 150.00 a month for groceries.She has no way of paying for her meds,we have made several calls to various organizations for help and everyone says "Sorry" so my mom is left out to just Suffer and Die.We lost my dad to lung cancer seven years ago as well as all my grandparents,aunts and uncles.Dosn't look to bright for my spouses and I ?? If indeed cancer is hereditary.I would appreciate any inpute or resourses we could use.Mom took her last Tarceva on Friday she is now out.  Jackie1956 Sat, 21 Apr 2007 00:00:00 GMT  On 4/21/2005 Dzimm wrote:You can call the Tarceva Company at 888-530-3083 and they have a foundation that will help with the cost. They totally covered the cost for my mother. I wish you the best.How did they help you? My mom is 70 years has lung cancer which has spread to her bones,other organs.Her Dr put her on tarceva in January 2007.She has now went into remission and the cancer has stopped growing,her blood count is finally going up and she is out of her Tarceva,her insurance is all used up just in two paying periods.She has a $6000.00 a year cap.She lives on 1100.00 a month SS and has other bills to pay and after that leaves her with about 150.00 a month for groceries.She has no way of paying for her meds,we have made several calls to various organizations for help and everyone says "Sorry" so my mom is left out to just Suffer and Die.We lost my dad to lung cancer seven years ago as well as all my grandparents,aunts and uncles.Dosn't look to bright for my spouses and I ?? If indeed cancer is hereditary.I would appreciate any inpute or resourses we could use.Mom took her last Tarceva on Friday she is not out. Jackie1956 Sat, 21 Apr 2007 00:00:00 GMT Hi to u too:Contact:  GENENTECH  INC                               1 DNA WAY                                          SOUTH SAN FRANCISCO                   CA   94080-4990                  Phone:  650-225-1000                         Fax:  650-225-6000             They make and distribute Tarceva.  I've had lung cancer for 10 yrs. and am still here.  I've been on Tarceva for 3 months now.  Too soon to tell if it's  working but I should know in a few weeks.  I hope this info helps and I'll put mom in my prayers.  IT DOES HELP.  Hang in, there is help.Dorothy O                                                 Wanttohelp Mon, 16 Apr 2007 00:00:00 GMT  On 4/18/2005 Drmort wrote:My wife will be starting on Tarceva. Medicare doesn't seem to pay for it as it had for her previous chemo drugs. Has anyone had experience with getting Tarceva at a reduced cost?I just picked up my 85 year old mother's first prescription.  Her oncologist told her that it would cost around $3,000.  Price was $345.50.  Besides Meicare, she has United American insurance. Tallahatchie_Lassie Thu, 12 Apr 2007 00:00:00 GMT  On 4/18/2005 Drmort wrote:My wife will be starting on Tarceva. Medicare doesn't seem to pay for it as it had for her previous chemo drugs. Has anyone had experience with getting Tarceva at a reduced cost?  Tallahatchie_Lassie Thu, 12 Apr 2007 00:00:00 GMT Have you had any luck?  We are also in the UK and awaiting options from the consultant.Good luck and god bless Alisonsalska Fri, 30 Mar 2007 00:00:00 GMT My father has stage IV non-small cell lung cancer metastasized to the liver. He just started on Tarceva about 10 days ago. His doctor told me it is a second-line treatment, usually given when patients have already had some chemo; however, since my dad is too weak for chemo, there's no reason why they won't let him try Tarceva. You can discuss it with your mother-in-law's doctor and see if this is an option for her since it is supposed to treat certain types of cancer only. This drug has been approved in the U.S. for a couple of years now, but I'm not sure if it is the case in other countries as well. For instance, it has just been approved in HongKong, where my father resides, for a few months only.   py_Fung Mon, 26 Mar 2007 00:00:00 GMT Hi my mother in law has been diagnosed with advanced lung  cancer Jan 2007, I am based in Liverpool in the United Kingdom, Britain, I was she hasn’t had chemotherapy as they said it was very advanced.  Since diagnosis she hasn’t been out of bed as she is unable to breath with out an inebuliser and would just like her to have a little bit of quality of life before the inevitable happens, I seen Tarceva on the news and was wondering if anyone knew how i could go about getting further information. PLEASE Emmared Tue, 13 Mar 2007 00:00:00 GMT My 84 yr. old Mom also has stage IIIB NSCLC-this is her 3rd year of chemo. She was started on Tarceva recently for her lung and liver met. I am interested to hear that your Mom has had good results from the med. My Mom had to cut back to 100 mg every other day because of bad diarrhea and rash on face, neck and scalp which was painful. The rash has improved with a steroid cream. The diarrhea is not pleasant. She's having bad abdominal cramps right now. She's taking lomotil which helps. Does anyone have info on how long the diarrhea lasts and any food suggestions to diminish it? Thanks. This is the best web site I have found so far. I am an RN and care for pts. where side effects of meds differ. All the drug sites in the world give you some info but it's only statistics and not real stories. Every person reacts to medication differently. I look forward to learning from all of you. Lynns_Mom Wed, 07 Sep 2005 00:00:00 GMT My Mom has Stage IV NSCLC and started on Tarceva - which has worked well to date. She was rejected by Genetech's Access to Care Foundation for reimbursement - but we found another program - The Medicare Replacement Drug Demonstration. My mom has been accepted for Level 1 Benefits from this program. The following web-site provides information regarding the program and coverage. It is a limited enrollment program and provides significant coverage: http://www.cms.hhs.gov/researchers/demos/drugcoveragedemo.asp Hope this helps and best wishes for success in your battle. Moms_Son Wed, 13 Jul 2005 00:00:00 GMT There is help is the payment of this drug. My father has stage 4 lung cancer. He started on Tarceva one week ago. There is a very large hand out booklet that your oncologist should supply you. In that handout is a section about help with payment of the drug. There is a telephone number within that information. Please call that number and talk to people. This is a a very expensive drug and there is help for you. My parents are in their seventies and my mother handled the phone conversation. Within days the drug was shipped directly to their front door. I hope this helps you and I pray for you, your wife and your family. Luv2nnc Thu, 12 May 2005 00:00:00 GMT I have gone through the break out stage, and then the ends of my fingers began to split. It has been 4 months and I feel fine. However, a couple of weeks ago, my hair began to break off and fall out. It is now very thin, normally I have extremely thick hair. I have been on 150mg and last week the doctor said I could now go down to 100mg to see if the hair shedding would stop. I will not have a CT Scan until June 2nd, I will let everyone know how it goes. I have stage IV Lung Cancer and have been beating the odds for 4 years. My radiation doctor says the latest spot could be radiated, so if the Tarceva does not get rid of it or shrink it dramatically. I will have more radiation. I originally had 6 months of chemo and then 37 radiation treatments, it was gone for about a year, then 6 more months of chemo and it was gone again. Good Luck to All Daywoo Sat, 07 May 2005 00:00:00 GMT Thanks for info re Genentech financial assistance. I had already applied and was successful in getting help from them. They even delivered the meds directly to us. This is the 5th day of taking the pills for my wife's stage IV NSCLC. No side effects yet but I guess it's too early to tell. After 4 months on Tarceva, have you had any positive results? Wish you lots of luck. Drmort Sun, 01 May 2005 00:00:00 GMT I have been on Tarceva for 4 mo. Ask your wife's Doctor for a form to apply for assistance through the Genentech Access to Care Foundation. Daywoo Sun, 01 May 2005 00:00:00 GMT You can call the Tarceva Company at 888-530-3083 and they have a foundation that will help with the cost. They totally covered the cost for my mother. I wish you the best. Dzimm Thu, 21 Apr 2005 00:00:00 GMT Sorry. I'm not responding directly, but I haven't figured out how to post a new message. My husband has been on Tarceva for four weeks. He is experiencing nausea and fatigue. We are trying to decide when he should get a scan to see if it is helping. Our thinking is to wait until he is on it for two months. Does anyone have specific information about this? Thanks. Leslie Tue, 19 Apr 2005 00:00:00 GMT My wife will be starting on Tarceva. Medicare doesn't seem to pay for it as it had for her previous chemo drugs. Has anyone had experience with getting Tarceva at a reduced cost? Drmort Mon, 18 Apr 2005 00:00:00 GMT Brenda, My 81 yr old mom has been on Tarceva for 3 months and has gotten dramatic improvement in her stage IIIb non small cell lung Ca. She is symptom free, her lung tumor and liver mets have shrunk, and says she is breathing better then she has for a very long time,and is back to being very active again. The only side effect she has had has been the rash and even at its peak it was tolerable. The rash has improved quite a bit now. No one knows how much time Tarceva will buy her but what is important is that it has given her back her quality of life . She takes her pill once a day and that is it. Tell your Grandma it is worth a try . Most people I have talked to the rash has been the side effect and some papers I have read have said that people that develope the rash tend to be people that the drug is working for. Good luck to your Grandma. Let her know she is not alone as there are many out there facing the same decision she is. JanMarie Janmarie_1 Thu, 31 Mar 2005 00:00:00 GMT Brenda -- hello; My husband has been taking tarceva for about two months. He did have some diarrhea with it but it did stop. He did have nausea and vomiting with it too. That comes and goes. It is a pill taken daily. My husband is on the 150mg dose -- and he never did get the rash that a lot of patients complain about. He does have lung cancer stage 4 and was diagnosed 18 months ago. Wish your grandmother well -- 93 years old -- how wonderful -- tell her to keep fighting!! God bless, Nancy C. Nanlynn Wed, 30 Mar 2005 00:00:00 GMT My 93-yr-old grandmother is soon to start Tarceva. I have appreciated this message board so much because it's the only place we've been able to get any real information. She is using the postings to have a meaningful discussion with her doctor next week. She's down to 80 lbs and has real misgivings about starting Tarceva due to the associated diarrhea. But the consensus is that she might as well try it. She can always stop. Several postings have mentioned reducing the dose from 150 mg to 100 mg or 50 mg, so she's wondering how the dose is reduced. Her question is: what form does Tarceva come in? Pills? Liquid? Brenda Brendals Wed, 30 Mar 2005 00:00:00 GMT