stand4hope Posted June 5, 2004 Share Posted June 5, 2004 A while back, there was a thread about starting a forum for Iressa. The thread expanded to include other suggestions. I don't know if the Board of Directors has met yet, but I wanted to re-visit this issue and put in my two cents. It would be very helpful to have a forum that would be called "Treatment Questions", and topics would say: Radiation Question, Taxotere Info, Navelbine Question, Lung Surgery Recovery, Iressa Questions, etc. I am currently seeking information on Cisplatin and searched the board for a long time, but when I do a search for "Cisplatin" there are so many posts to weed through to find one that just deals with the effects of the drug itself. I finally resorted to the negative net, but would really like info from people that have used it. Also, there are so many posts from newcomers, test time, grieving, etc. to respond to that I hate to start a thread asking the question because I'm sure it's been asked and answered, probably many times. Thank you in advance for considering this. And also, since most of you have already probably read this, I guess I'll go ahead and ask for Cisplatin info. Love, Peggy Quote Link to comment Share on other sites More sharing options...
KatieB Posted June 5, 2004 Share Posted June 5, 2004 The B.O.D. did meet and discussed this along with severl others topics and suggestions. In the interest of space and bandwidth we did just create a forum that would address these types of questions NEW TREATMENT, MEDICATIONS & CLINICAL TRIALS It is pretty a broad forum, but it would encompass all medicinal topics on chemotherapies and prescriptions, specific questions on treatment plans and upcoming clinical trial information. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted June 5, 2004 Author Share Posted June 5, 2004 That will work! THANK YOU!!!! Quote Link to comment Share on other sites More sharing options...
karenl Posted June 6, 2004 Share Posted June 6, 2004 Peggy My mum has been on Cisplatin and Gemcitabine for 6 months now. She has the doublet on day 1, and then the Gemcitabine alone on days 8 and 15, then a week off (hooray) before starting again. The side effects have been fairly mild, but getting more intense as time goes on. She says that her worst days are day 6 and 7, but even on those days, she is able to function pretty much normally. She is given anti-nausea medication which seems to work well. Some headaches. Tiredness. Some bloating and constipation. She has lost some hair, and now that we are in the 6th cycle, her blood counts are dipping a bit lower than previously, leaving her somewhat lethargic. Also has had some hearing disturbance, which is a common side effect of the cisplat. Overall though, she would tell you that the side effects have been very tolerable. She does take alpha-lypoic (sp?) acid which is supposed to help avoid the hearing problems without interfering with the chemo. Also takes a variety of other supplements which I can find out about if you are interested. Hope this helps a bit - obviously everyone responds differently, but we were pleasantly surprised that it has not been more difficult. All the best. Karen Quote Link to comment Share on other sites More sharing options...
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