Temodar Question

I hope someone can offer some help. My husband has GBM dx 1/05. He had surgery, radiation, and Temodar. He has just completed one year of Temodar. But he is having a very hard time tolerating it, as it seems to get worse with each treatment. But he is 14 months out with no regrowth, so obviously something is working. His doctor says he could discontinue now if he wants to, but he recommended that he stay on it for another year. This was depressing news for my husband. He continues to work full time, so that makes the treatment more difficult also. How long has anyone else stayed on Temodar? Any help would be greatly appreciated.

Patty

Patty--

I wish I could be of some help. My brother "does not tolerate" Temodar--they think he is allergic--but we are trying our first post-radiation session Monday with high dose prednisone steriod and benedryl. He only had 20 days of Temodar during radiation cuz his skin got red and bumpy and was starting to swell up. That is what we call "can not tolerate." His skin got bad as we were dosing down the dexamethasone while on Temodar during radiation. He wasn't nausious (sp) but docs were afraid of anaphalactic shock. We'll see how he does this round. A bit worrisome if, as seems to be the case, it gets worse each time.

My brother is also working (yes!) but part time right now. The dex pretty much masked his Temodar side effects, but glad to be off the dex and those side effects. The prednisone doesn't pass the blood/brain barrier so hopefully it will help his skin--which is where his problems seem to show--without dex-type side effects.

Did your doc recommend a different type of chemo, like the Duke rotation trials, or discontinue chemo altogether? Any recommendations from doc--like small steriod dose--to manage your husbands side effects?

Denice

Dear Patty,
I have been thinking of you and Russ and wondering how the two of you are doing. It is wonderful that Russ is now 14 months since his initial diagnosis.

I too have researched the Temodar question. From everything that I have read, it seems that two years is the maximum use of this medication. Otherwise, there is a risk of developing lymphoma apparently. If you want to review some other responses, simply check out Length of Temodar Use?? dated 1/23/06 on this board.

You mentioned that it seems each cycle of Temodar is getting harder for Russ. What is he experiencing? Are there any medications to counteract his side effects? Is it possible for him to work less than full-time during the most difficult days of his treatment? In other posts, you have mentioned Plan B ... Does Russ' doctor think this would be an option based on Russ' ill effects from Temodar?

Thinking of you and Russ.
Take care,
Rondi

Dear Patty,
I have been thinking of you and Russ and wondering how the two of you are doing. It is wonderful that Russ is now 14 months since his initial diagnosis.

I too have researched the Temodar question. From everything that I have read, it seems that two years is the maximum use of this medication. Otherwise, there is a risk of developing lymphoma apparently. If you want to review some other responses, simply check out Length of Temodar Use?? dated 1/23/06 on this board.

You mentioned that it seems each cycle of Temodar is getting harder for Russ. What is he experiencing? Are there any medications to counteract his side effects? Is it possible for him to work less than full-time during the most difficult days of his treatment? In other posts, you have mentioned Plan B ... Does Russ' doctor think this would be an option based on Russ' ill effects from Temodar?

Thinking of you and Russ.
Take care,
Rondi

I have just completed my 2nd month of temador. I have had no problems with this drug but I also take a lot of nutrients to keep my white blood cell and platelet counts from going down. I monitor these counts every week. I am supposed to be on this drug for 10 more treatments. My tumour is an olig........... class 3.
David