CancerCompass message board discussion started by Macdog on 9/14/2005 http://www.cancercompass.com/message-board/message/all,2955,0.htm Sat, 11 Oct 2008 00:00:00 GMT Sat, 11 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi everyone, I have been on Tarceva since Feb. and had stage 4 nscl in both lungs. I had a CT scan in June and again in Aug that confirms the tumors in my lungs are no longer visible! The radiologist even questioned the oncologist as to whether the cancer diagnosis was right. Unfortunately 2 different treatment centers have read the biopsy slides and it is cancer. My oncologist is "cautiously optimistic", my husband and I are elated. I know it is a maintenence drug and the cancer could come back at any time. My question is, has anyone else had these results? The other patients my oncologist has on Tarceva have only kept their tumors from growing. I am still taking it and it has run through ALL the side effects. The face rash is under control, I had water blisters appear on my toes, I still get diahrea several times a week, and the newest thing is sores on my head. They are crusty oozing bumps in my hair. Anyone have any remedy for this? They don't hurt, but do itch. Macdog Wed, 14 Sep 2005 00:00:00 GMT WOW! That is incredible news!!! Congrats! Your news is inspiring and provides a lot of hope.... I have been on Tarceva (150 mg) since 5/19/05. Initially, my lung tumor shrank 15%. As of my last CAT scan in August, my tumor has stabilized. And, yes, I too am experiencing ALL of the side effects of Tarceva. But as you say, it is worth it! I just started experiencing the "blisters" on my toes - they are quite painful. Although I do not have sores on my head yet, my hair is thinning out. Do you know if you have the EGFR mutation? And what treatment center are you going to? Thanks for sharing your GOOD NEWS and keep us posted... - Kim Kimflorida Fri, 16 Sep 2005 00:00:00 GMT I have not been told I have an EFGR mutation but have been told if my cancer does mutate then the Tarceva has become ineffective and at that time hopefully there will be something else. I started with one tumor in the upper lobe of the left lung a year ago, had the lobe removed and 4 rounds of chemo. The oncologist thought it was an easy case. I was never a smoker etc. then 3 months later at my first check-up the CT scan showed small tumors all over both lungs. I am being treated in Fargo, ND at the Roger Maris Cancer Center and they sent me to Mayo in Rochester for a second opinion before starting Tarceva. Mayo said with the rapidity of the spread of the cancer, that was my only option. In June of this year I went to Midwestern Regional Medical Center in Zion, IL for an evaluation. I was just worried I was not doing enough. They spent 4 days doing scans and evaluations and were the first to find the tumors were not visible. In Aug at my oncologist in Fargo it was confirmed. I am being realistic when I say it probably is not a cure, but at this point I don't care, it allows me to feel fine and continue working and leading an active life. I'll buy all the time I can get. I still have slight outbreaks of acne on my face and arms and the blisters have run their course it seems. But the sores in my nose and on my head are really bothersome and hurt. I am on a low grade antibiotic for them (minicycline)but it doesn't seem to help much. My hair came back in thicker after chemo and has stayed the same so far. Pubic hair though has thinned out to next to none. Some real strange side effects! I will pray for your continued good luck with the Tarceva. susan Macdog Fri, 16 Sep 2005 00:00:00 GMT My doctor at MD Anderson told me the same thing - that I will continue taking Tarceva until I develop a 2nd mutation. And, like you, I'm hoping that the Tarceva will work long enough for the doctors to develop something to combat the 2nd mutation. I have my next CAT scan the first week of November, so I will let you know.... Keep me posted. - Kim Kimflorida Sun, 18 Sep 2005 00:00:00 GMT I am also taking tarceva since 1/29/05. I was diagnosed with stage IIIB nsclc in Sept 04. I am a non-smoker and the only symptom was a cough for a few weeks and shortness of breath. A cat scan showed a 4cm tumor in the upper left lung surrounding aortic arch and fluid in sac around my heart and it was inoperable. I went through 2 rounds of chemo with no change to the cancer. In Jan I had pneumonia and started having problems talking and was very short of breath.My left vocal cord was parelized and I couldn't walk 10 feet without being out of breath. I was in pretty bad shape. Then my doctor at Kaiser in So CA put me on tarceva. With that wonderful medicine and lots of prayer my next cat scan in late April showed the tumor only present on a microscopic level. I had minor side effects (rash on chin & slight diahrea which seems to come when I eat a high fat meal). I also have the sores in my nose & hadn't realized it was a side effect Grammycarol Mon, 19 Sep 2005 00:00:00 GMT Didn't know I was limited space. I had follow-up cat scan in Aug that showed I have three new densities in my same lung. No mets anywhere else. Did a 2nd cat in Sept that showed same so Dr is continueing tarceva. He thinks it will still fight cancer-didn't mention it could mutate. I still feel great but have noticed some shortness of breath. My chin continues to break out & Dr said that is a marker that tarceva is working. Also it works better in non-smokers. I still believe my quality of life is greatly improved on tarceva. Has anyone else had the tumors recur? What did Dr recomend? I have never had a 2nd opinion. Grammycarol Mon, 19 Sep 2005 00:00:00 GMT I was interested in your evaluation from Zion. My husband has an appointment in Oct at the facility in Tulsa, OK. I had read that they might be considered a Quack. My husband has nsclc since Aug 2003 in the IV stage and was only given 6 weeks to live without treatment. He has had various types of chemo (about 5 or 6 kinds) and is still doing good, but has had severe weakness at times but now is on Alimta (2 treatments). At times he is able to play 18 holes of golf, but seems to be doing very well with Alimta. The other chemos he was on is as follows: Carboplatin or Paclitaxel, Gemcitabine, Camtosar, Carboplatin with Vinorelbine. We have since changed from the doctor that ran his own office and worked alone to MD Anderson in Orlando, FL. MD Anderson put him on Altimta and we hope that being evaluated by Cancer Treatment Centers of America in Tulsa, he will get good proof that the Alimta is working. He was a semi driver and a light smoker, plus possibly the enviornment of the gas fuels of traffic may have contributed to the cancer. Otherwise he has been very healthy. Any one else out that been on the strong chemos listed above. No doubt they have helped him, but the weakness at times caused him to be on a walker and even not able to walk at times. We are truely thankful that he is doing good and still here and we are well aware cancer must be attack strongly. Plus, we have had a lot of prayer. Alforlady Thu, 29 Sep 2005 00:00:00 GMT I was skeptical about the center, but had several people recommend them. My health insurance threw up a red flag, but in the end they paid all of the $17000.00 in charges. They treat you wonderful but at times it seemed a little dragged out. I was scanned from top to bottom and had just had some of the same scans a few months prior so I thought they were just wanting the money from the scans. In the end, they concurred with my treatment and said since the tumors were not visible, they could not recommend another treatment option. The other patients we met there were like family members by the end of the week. I still email several of them and we all pray for each other. Being picked up at the airport in Chicago in a stretch limo I thought was a little excessive, I'm sure they are overcharging like crazy, but then I find similar overcharging at my local treatment center. I do know they turn away patients without health insurance which I find a little disturbing also, but they do some techniques that other centers have not used yet and they work. You will have to make up your own mind, it did end up giving me peace of mind which Mayo Clinic had not done, they essentially sent me back to my local treatment center and said that was all that could be done. Good luck, I will pray for your husband and for you. Susan Macdog Sun, 02 Oct 2005 00:00:00 GMT I have just read on this message board about the blisters on toes...but has anyone ever had sores on their fingers? I have five fingers that have very painful cuts (like you get in winter) and have had them for over 8 days. They each have bled at one time or another. Is this a symptom of Tarceva? I have been taking Tarceva for the past 2 1/2 months. I've gone through the nose rash - chin rash and now notice some bumps on my head which I thought were mosquito bites, but they don't itch. I also have the beginning of one more sore on my right foot. Thanks for any help. Jeanne Jelly Bean Tue, 04 Oct 2005 00:00:00 GMT Yes, I had the painful sores on the ends of my fingers, like paper cuts only worse. Thought they were gone in the spring, had only a few all summer, but now I have a total of 5 fingers affected on both hands and they seem to be getting worse. I had tried "new skin" to protect the cuts (yes they split and bleed when you use your hands)but that burns pretty bad and really doesn't help much. I am a family and consumer science teacher and often have my hands in water, that doesn't help. My husband tries to wash the dishes when he can at home, otherwise I have to try to wear gloves when I wash. The sores on my head are itchy, but when they first started, they were just bumps, and didn't itch. Now they are all over my scalp and itch. BUT, these problems plus a little diarhea, rash on my face and blisters on my toes are not too much bother when the Tarceva has made my tumors shrink so they are not picked up on a scan. Hang in there. Macdog Tue, 04 Oct 2005 00:00:00 GMT Thank you for your answer. I hadn't realized this was a symptom from taking Tarceva. It makes accepting them easier. Do they ever go away? Getting itchy bumps on my head are something to look 'forward' too? NOT! Jeanne Jelly Bean Wed, 05 Oct 2005 00:00:00 GMT Yes, the itchy bumps are more side effects. I have had them for several months now, they spread from a small spot to all over the top of the head. They ooze and itch and then dry up and more start. Kinda gross, but I still have my hair, so no one notices them but me. Also have sores inside my nose that bleed and hurt, but not too bad, they seem to get better and not quite go away and then come back! Macdog Wed, 05 Oct 2005 00:00:00 GMT So what you are saying is: Don't get used to being without any side effects from Tarceva because around the corner, there is another one that will get you. I still have my fingers with sores on them. They hurt soo much. Also have gob in my eyes for these past two weeks which refuses to go away. Now I see my feet are starting to get little cuts on them...that doesn't make walking any easier, but the alternative compared to taking Tarceva is a no brainer. So I'll keep taking Tarceva and be grateful for it. Thanks. Jeanne Jelly Bean Fri, 07 Oct 2005 00:00:00 GMT I have been on the Tarceva since 5-2-05. I have had the rash since 5-5-05. I have the sore fingers and toes. I get a rash on my feet and it comes and goes. I also have bumps and rash on my stomach, arms and legs. It seems to get better in one spot and then travels to another spot. I have the diarrhea and it comes and goes. My eye lashes have gone crazy. They are growing in every direction. I got the sores on my head. My hair very thinned out so I shaved it. It is coming back. I got the facial hair out of this world. It is confusing the cancer cells because they are stable. Not growing. I have BAC Stage 4. I am 43 y.o. and did not smoke. I lost a lung will be 3 years in Jan. I currently work 40 hrs a week not counting what I do around the house. The Tarceva is working if we have these side effects. I can deal with it. Collie Tue, 11 Oct 2005 00:00:00 GMT I have been on Tarceva since July 1st, after going through chemo for a Stage IV tumor in right lung. The tumor has disappeared and I have gone through the bumps on face, redness, and now am experiencing sore fingers and toes. It feels like they are ingrown. I was prescribed Regenecare for my face and it cleared it right up, so I am applying that on my fingers too. My hair continues to fall out and didn't realize that was a side effect. Guess it's short hair from now on. Lindy05 Tue, 25 Oct 2005 00:00:00 GMT Congratulations. Now you know that Tarceva is indeed working. All the side effects that I have had sound like yours. The sores on the fingers and toes do subside after a while. I was prescribed an antibiotic and that helped alot. My eyes which were also infected have cleared up. Two weeks ago I had a CTScan and my tumors have shrunk more then 50%. I am hoping to see them disappear in a few more months. I've been on Tarceva for at least four months now. Don't notice the hair falling out since I was bald from Chemo. But do notice it's not growing back as fast as it should. I guess it's one step at a time, and hair is the least of my worries. I even take my hat off whereever I am, so I can feel comfortable. Wearing a hat gives me a headache, and no one around me seems to mind looking at my five oclock shadow on my head. Everyone once in awhile, I will get a stranger staring at me, but what the heck - at least I'm here for them to look at. Take care and stay well. Jeanne Jelly Bean Tue, 25 Oct 2005 00:00:00 GMT Hi All, I'm so glad that I've stumbled upon this website. My Mom has nsclc, stage IV and has just about finished her first 30 days on Tarceva. She just got the rash you've been talking about on her hands. From reading all your e-mails I will now know what to look for and be able to tell her as they come that she isn't alone. I wish she was a computer person so she could write but she isn't. It is so good to hear that you are having success with Tarceva and I wish everyone the best. Thanks and take care of yourselves! Teajay Mon, 31 Oct 2005 00:00:00 GMT Thanks for the web site for Lindi Skin. Sound like great products. Right now I'm dealing with really bad sores on my scalp. They ooze and form thick scabs and they itch and burn. My oncologist tried some antibiotics but all they did was give me diahrrea. What I need is something to rub in my hair to sooth the sores, but there seems to be nothing so far. The sores on the rest of my body (I get the rash the worst on the face but also get it on my arms and hands)are not too bad with a special cream a nurse practioner perscribed for me. The cracks on the ends of my fingers have started up again now that winter is setting in here in the north country. If anyone else has the sores on their head and can help, please let me know. Macdog Tue, 08 Nov 2005 00:00:00 GMT Sue, The lindi skin products are good on face. For sores on head and fingers, ask your Doc about Triancinolone Acetinide cream USP, 0.1%. This helped me with the head sores. Used twice a day it really helped. Gary Garyrom Tue, 08 Nov 2005 00:00:00 GMT My father has been on Tarceva for two weeks now. Over the past 4 days the diarrhea has become intolerable. We are trying to treat it with Immodium and now Lomotil. We haven't been successful. He didn't take today's dose in the hope of settling his stomach. If anyone has any recommendations on how to deal with the diarhhea, we'd appreciate it. Progbh Tue, 21 Feb 2006 00:00:00 GMT Gary, Thanks for the tip on the cream for the head sores. I tried going down to the 100 mg Tarceva again for 2 weeks and it didn't help the head sores. Looks like I need plan B and you might have the answer. I had tried Bactran cream but it doesn't get rid of them, it just softens them. Thanks. Hope you are feeling well otherwise, I am OK except for the sores. Macdog Tue, 21 Feb 2006 00:00:00 GMT Hi, My mother is stage IV NSCLC and decided against chemo or radiation. She started on Tarceva about 3 weeks ago and has had no symptoms..zero. I know the blisters are a marker that the drug is working. I'm not sure what it means if you have NO symptoms at all. Does that mean it is just not working? If anyone has the answer, please let me know. Don't worry about hurting my feelings. I just need to know. To all of you who are benefitting from the Tarceva, that's awesome! Thanks for any inforamtion you can provide. Tater1992 Fri, 24 Feb 2006 00:00:00 GMT Well, I certainly brought this thread to a screeching halt! Tater1992 Wed, 22 Mar 2006 00:00:00 GMT