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by Lynn1 on Sat Jul 14, 2012 06:18 PM
Can anyone suggest an alternative to radiation plus temodar for newly diagnosed GBM Grade IV with unmethylated MGMT?
I don't see the point of Temodar if MGMT is active, yet the several oncologists we spoke to all insist on starting with "standard of care" radiation and Temodar (possibly with an add on).
by HubbyhasGBM on Sat Jul 14, 2012 07:29 PM
Hi. My husband is unmethylated, too. I understand your frustration. The doctors caring for my husband believe the MGMT tests are notoriously unreliable. Given that the lifespan is cut so short if one refuses radiation and Temodar, we opted to have the radiation and 8 rounds of Temodar. For us, the situation was dire. My husband would have been dead in a couple of weeks had we not done that. The docs were real upfront with us and said they would be giving us time, not a cure, but that with time comes hope for a cure. From my understanding, even the unmethylated patients do see improvement with radiation and Temodar - just not as much as methylated patients do.
My husband did very well over the last year. In April, there was a small "something" that they wanted to watch. In May, it was dubious whether it had grown or not. Last week, they found it had grown substantially. Next Wednesday we will hear what the other suggestions are. For us, it is really a dilemma because his the tumor is very close to the brain stem, so surgery is quite risky. And, depending on the location, surgery without following with radiation can be counterproductive because surgery carries risks, recovery time is involved, and GBM cells reproduce immediately.
I will offer, if there is ANY silver lining, they say that no one can tell the difference between tumor regrowth and necrosis without surgery. If it is necrosis, it could plateau. I'll try to add a post after next Wednesday's visit. If I had it to do over again, I would still do the radiation and Temodar. The Temodar had mild side effects that were quite tolerable until late in the game.
In reading countless posts here, I am convinced that one must be clear with the doctors of your wants. For us, my husband wants quality time, not quantity time. Having them offer a treatment that would increase lifespan without cognitive abilities, or with excessive side effects, is not my husband's wish.
My best to you.
by Lynn1 on Sat Jul 14, 2012 11:02 PM
Thank you for your thoughtful reply. I wish you and your husband a good outcome on Wednesday and lots of quality time together, time that reaches through to when someone figures out how to get rid of this thing.
by HubbyhasGBM on Sun Jul 15, 2012 01:32 AM
In my humble opinion, the key is developing some cure that can be used instead of radiation. The radiation--an essential ingredient right now--is unquestionably damaging later. It not only is damaging, the damage continues to accrue over time. The problem for us is not whether he can be made to live longer (which is admittedly another challenge), but whether because of radiation effects, that "living longer dream" will be what we imagine.
I wish you and yours the best. It's a tough journey, but also it has been the most intimate year of our 21 years of marriage. I'm honored to be his support, but I do wish we could have done this 40 years later. : )
by siblingof on Sun Jul 15, 2012 02:09 AM
by fierogirl on Sun Jul 15, 2012 06:42 PM
My husband's GBM is also unmethylated. He went through radiation and Temodar, followed by Temodar (because this is the standard treatment). He had recurrence of tumor. Temodar was ineffective (the NO said something about husband becoming unresponsive to it--something like that). He's had 3 treatments of Avastin administered via IV every other week. MRI was repeated after 6 weeks (just 3 treatments) and there is markedly excellent improvement. A golf ball size tumor can now barely be seen on the scan. And the 3/4" tumor shrunk to 1/2". He will have 3 more treatments starting tomorrow, followed by another MRI in 6 weeks.
by Lynn1 on Mon Jul 16, 2012 12:41 AM
Thank you so much for this information. I am so glad to hear the tumor already has shrunk! I wish you and your husband the very best and am rooting for a good MRI in 6 weeks.
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