CancerCompass message board discussion started by Brendals on 3/30/2005 http://www.cancercompass.com/message-board/message/all,1804,0.htm Sun, 11 May 2008 00:00:00 GMT Sun, 11 May 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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 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 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 Thu, 31 Mar 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 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 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 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 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 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 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 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 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 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 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 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  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  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 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 4/21/2005 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  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 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 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  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  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 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 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 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  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 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 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 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  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  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 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 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  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 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