Henry1929

Hi all. Does anyone have experience with longterm side effects from WBR. My wife had wbr in 2003 and an SRS treatment last December. Recently she has had difficulty with short term memory and, more troubling, difficulty with word retrieval. She understands what you say but has trouble finding the right words herself, very fustrating to both of us. She had a recent MRI and check with radiation oncologyst: everything looks good and doc says speach/word problems are long term effect of wbr, not from the recent SRS. Anybody have similar experience?

Thank you Rich B,francesbean, and Kathleen for your responses. For now it looks likes the trial with taxotere is off. As is often the case the brain tumor and seisure history have exluded her. Not to say that taxotere isn't a possibility soon anyway. There are other possible trials available, just a matter of finding the right place. Good luck to all!

Thank you all for your answers, help and support. Your answers reminded me that each person reacts differently to these things just as the individual's cancer is different. As usual if we can find out soon after treatment starts whether it is working then the tradeoffs maybe worth it to her. Even though the last treatment stopped working my wife is so glad to be "off" for a while. We have some other trial prospects, so we will be in that in between mode for a little while as we weigh the choices. She is very brave, as you all are. Thank you all again.

My wife is consdering a trial combining an experimental with Taxotere (docataxel) given every 21 days. I am interested in finding out what has been people's experience with Taxotere, side effects,fatigue, how long was the treatment, success? She just came off Gemzar which worked for about 7 months. She tolerated it pretty well, biggest problem was fatigue and some hair thinning. She did pretty well when she was on the original Taxol/carbo. chemo.although she of course lost all her hair and eyebrows and the nausea had to be managed. After that treatment her hair did come back, although spotty because of the whole brain radiation. She very much doesn't want to lose her hair again but hair loss seems to be assured with taxotere. Anyone have experience? Other side effects?

Thank you John and Sherriot for your replies. Info was helpful. As for Iressa - tarceva , doc suggested she could try tarceva after the iressa failed but his thinking was that her tumor had developed a secondary mutation causing the failure and since tarceva is close to the same it may not work or not work for long. He had an experimental from BMS in mind that is a broader kinase inhibitor and more likely to be a success aginst the new mutation. So we waited to get on trial only to find that BMS would not accept her because of the brain issues. One of the problems with trying to get on trials is the need to have been off treatment for 30 days in many cases, so we have held off trying the tarceva. We are hoping for a place in the Gemzar/flavopirinol trial, the CPT-11 / E7070 sounds kind of rugged in terms of side effects so she may opt for a standard treatment if the trial doesn't work. Very hard to go back to a chemo after 7 months on a pill and then feeling good with no treatment! Our Docs are good, always get back to us, but waiting.....!!

My wife has been hoping for a place in a trial with Gemzar and flavopiridol. But if it doesn't open up doc is suggesting a trial with Irinotecan and an experimental, E7070, a sulfonamide (?). Irinotecan (aka CPT-11 or Comptosar) is approved for lung and been around for a while. Can't find much about E7070. Has any one had any experience with either of these?

Thank you all for your responses. Very helpful. Many of you had gemzar with carboplatin for which, I think, hair loss is a common side effect, so maybe Gemzar won't be too hard on my wife's very precious hair. Alimta is also a possible choice, if the trial doesn,t work out, so shineladysue your husbands experience is very encouraging. Thanks. And good luck to all!!

My wife is considering a trial with Gemzar and flavopiridol. Her hair has been slowly but steadily returning after her whole brain radiation and initial chemo. We know that hair loss is listed as a "rare" side effect from Gemzar, hair thinning more common. She so doesn't want to lose what has come back, what has been everyone's experience with Gemzar? And any one had any experience with flavopiridol?

I have searched quite extensively on line for trials for my wife, stage IV NSCLC. The sites mentioned above have quite a bit, but it is hard to find trials that accept brain metastis. Some will accept if they were removed and have been clean for a period. A big issue for me was balancing the risk and questionable "success" of a trial against the stress of travel to a distant site. We have ended up preferring to trust our doctors and what is available locally, which fortuantely is very good (New England). I was very excited by the sound of some trials that were at a distance but in balance the comfort of our present situation outwayed the risks of distance. Also I found that there were numorous trials available at our local cancer center that did not show up in any internet search. So I guess my advice is look "locally" first. We have also found that the decision to go on a trial, especially phase I, is very complex and the knowlwdge and advice of the doctors you have trusted can not be replaced. Good Luck!

We are considering a phase one trial. Reading the documents is extremely scarey!! We think 1 or 2 groups may have already been through one course of the treatment, so more info may be available, we willbe talking to trial docs on Monday so will learn whole story, but my question is what has been others experience with phase one trials? Trying to weigh the risks and complex schedule required of the trial with possible benefits. My wife has been off treatment since Jan. when we found Iressa had stopped working, but has been feeling great! Because of her history she is supposed to be a very good candidate for this particular trial ( a new protein tyrosine kinase inhibitor from BMS). any experience?

My wife is looking at some options. What have people's experience been with Alimta? side effects? Length of treatment? And Tarceva, any body had success with Tarceva after Iressa stopped being effective. I know everybody is different but some experience would be appreciated. Thanks

Thank you all for this site, after 2 years with my wife's c. this is very helpful. As we move through treatments the ups and downs are harder, reading through the messages has been an inspiration, thank you. This is a great resource!