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HollyMoore

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Everything posted by HollyMoore

  1. What Peggy says is true. Anyone taking it should be fully informed and closely monitored. The Accutane I am taking for the Tarceva rash is prescribed by one of Philadelphia's most experienced dermatologists - former head of dermatology for Pennsylvania Hospital. We went over the side effects and he is closely monitoring me - especially for lipids and liver function. So far the only side effect I'm visibly experiencing is cracked lips - Vasoline seems to do the trick for that.
  2. I am on this board because, as I have mentioned before, my best friend, Nadine, is ungoing therapy for stage IIIB NSCLC. However I am stage IV kidney cancer, started off as Stage I in 1994 and raised to Stage IV after mets appeared in 2002. I started a clinical trial of Avastin/Tarceva in 2004 and for the past 21 months have been disease stable. I'm jumping in here because I've come to learn that Tarceva is being prescribed for NSCLC. It's possible some may have had the same side effects as I. One of the common side effects of Tarceva is an acne like rash on the face and wherever else there are hair folicles. I never got a bad rash on my face, but for the last few months a rash on my stomach and especially my back has been driving me crazy. Constant itching in the evening. Regular flare-ups on my arms and legs too. I have been seeing a dermatolgist for about half a year. He had me try antibiotics and both steroid and combination steroid/anti-fungal creams. Occasional relief, maybe, but nothing really worked. About a month ago he saw a journal mention that Accutane had showed promise for Tarceva rash. I have been on it for a week and half now. Think I signed more paperwork than for my clinical trial. Accutane causes birth defects and there is a significant risk of major depression. Its primary use if for teen acne that hasn't reacted to any other treatment. Liver function and glyceride blood tests every month. Doctors visits every month and prescriptions are for 30 days and non-renewable. My oncologist said they wouldn't mess with it - has to be through a dermatologist. The good news. Two days after starting Accutane the itching mostly stopped. There is minor itching once in a while but nowhere as bad or as frequent as before Accutane. Some flare-ups on my scalp and arms, but those have pretty much stopped, too. The rash, itself is still present. Just doesn't itch. Anecdotal, but Accutane seems to be working for me. Holly Moore Philadelphia, PA
  3. My friend, Stage IIIB, lost her voice about five weeks into treatment - the Southwest Oncology Group combination of Cisplatin, V16 and radiation to be followed in another couple of weeks by taxotere. It mostly came back after about 10 days - she's still a bit hoarse. They thought it was early to be caused by the radiation and blamed on thrush deep down in her throat. Holly Moore Philadelphia
  4. Melinda - I'm here because a good friend has recently been diagnosed Stage IIIB NSCLC. However I have been on a Avastin/Tarceva trial for Stage IV Clear Cell Kidney Cancer since November 2004 and have been disease stable since starting it. If it wasn't made clear to you, Avastin/Tarceva are genetic drugs as opposed to traditional chemotherapy. They have side effects, but in many ways are supposed to be much milder than chemo. My experience is similar to your mother's - diarrhea that comes and goes. My diarrhea was constant, but mild - just having to go two, maybe three times a day. Because of that dehydration wasn't really an issue. However I know of others who had much more severe diarrhea that required IV fluids. I still have it off and on. Immodium helped a little, but not a lot. I guess where I'm netting out diarrhea wise is that if it's just a few times a day, hang in there - if its all day, you need to check with your doc. Also was feeling very tired. I'd get home from work at one or two PM and just collapse in an easy chair for the rest of the day - all day on weekends - some napping, some computer and PC watching. Seemed worse a few days after my infusion (I get one every two weeks) but I was pretty much worn out most of the time. I think that is one of the side effects of the drug combo. I talked over my fatigue with my internist. He thought I might have clinical depression. He prescribed Zoloft for that. At the same time I started taking Ambien because I was waking up a number of times during the night. Not sure if it was the Ambien, the Zoloft, or the combo - but since starting I've been much more active - rarely napping in the afternoon. Just anecdotal, with me. My oncologist did not think I was depressed. But for me, at least, it's working. Also had a lack of appetite which influenced my internist's diagnosis of mild clinical depression. My appetite is back now, too. There's also a possibility of an acne like rash from the Tarceva. They'll prescribe steroid creams for that. Give you mom my best. Avastin and Tarceva are cutting edge medicines. Holly Moore Philadelphia PA
  5. Thanks all. The positive experiences with Cisplatin are very encouraging. Here is a summary of my friend's onoologist's reply this morning when I asked - the first day of my freinds chemotherapy. Cisplatin is the gold standard. Also there has been to head to head research on the effectivness of the two drugs. Until Carboplatin is proven more effective they are sticking with cisplatin when the kidney is strong enough to handle it. Cisplatin is rougher on the kidneys. There is some evidence that Caboplatin is rougher on the bone marrow. There has been some sort of "less effectiveness" tracking - the oncologist used a different term. Based on that neither drug is less effective. Holly Moore Philadelphia PA
  6. Greetings all, thanks for the warm welcome. I've passed on your good wishes to my friend, Nadine, too. This was her first day for chemo and radiation. A long day but she seems reluctantly ok with the experience. Everybody at Pennsylvania Hospital has be great. Holly Moore Philadelphia, PA
  7. My friend is starting chemotherapy and radiation next week for stage IIIB NSCLC. Her oncologist has her on cisplatin and VP16. In researching the platinum drugs it appears to me that carboplatin is easier to handle than cisplatin and similar in effectiveness. Is there a reason an oncologist would prescribe cisplatin over carboplatin? Thanks, Holly Moore Philadelphia PA hoddymoo@aol.com
  8. I'm a 12 year clear cell kidney cancer (RCC) survivor whose best friend has recently been diagosed with NSCLC - stage IIIB. I've been on a clinical trial of Avastin and Tarceva for just about two years. Some shrinkage of mets at first and disease stabilization since. Interesting the the same combination is being explored for various types of lung cancer. A RCC discussion forum has been a tremendous help for me. It looks like this community will help me give my good friend similar support. Holly Moore Philadelphia
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