whole brain radiation

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whole brain radiation

by miamutt on Thu Jun 06, 2013 06:08 PM

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the info i am reading is old, meaning haven't seen anything fro 2013, any new info on this?

pros and cons

want to do whole brain and then if two small tumors have not shrunk or gone away, cyberknife

RE: whole brain radiation

by SarahGrey on Thu Jun 06, 2013 07:16 PM

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Hello! My husband was diagnosed 13 months ago with GBM, with inoperable tumors. His doctors at NYU recommended whole brain radiation... If there's anything I regret about his treatments, ANYTHING I regret in this past year, it was the whole brain radiation... I found my notes the other day, what they said could be side effects- nausea, fatigue... Well. What the radiation did was essentially retard my husband. My brilliant husband now can't even add 2+3. He hasn't been able to do something as complicated as that following the radiation. The GBM didn't affect his thinking. It was the radiation. I would have rather have lost him sooner and had him still be himself, than have him stay this long and have soooo many cognitive problems. If I could, I swear I would punch his doctors in the face and kick them in their balls. Yes, I am bitter. Fatigue and nausea?? What about cognitive issues?? And they threw us into such a rush about everything, such a panic that we felt this was best and had no other choices... (Because thats what they told us). Oh, the best part? After everything, I found an article that one if his doctors wrote - saying that whole brain radiation shouldn't be used so much. So even though he didn't even believe in it, he still did it to my husband... ----- so, pros? Umm... And cons? Too many to list. It also made my husband sleep ALL day and made him feel like he had been hit by a bus. In my opinion, don't do it. No one should ever do fhat...

RE: whole brain radiation

by miamutt on Thu Jun 06, 2013 07:31 PM

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OMG

don't even know what GBM is

my tumors are operable and i can do just those (way small)

were his tumors mets or was it originally brain cancer?

RE: whole brain radiation

by SarahGrey on Thu Jun 06, 2013 08:49 PM

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Ahhhh GBM stands for glioblastoma and it's a miserable primary brain cancer. Good thing is it usually doesn't spread outside the brain. Bad news is that it's essentially not curable and average survival is one year. Sigh. --- if they're operable and safely so, it seems like your best option. Even cyber knife is good. There's also something new at Cleveland clinic with a probe and it helps to lessen any damage to the surrounding areas (because it's a probe and not a scalpel)... I hope this helps and good luck!

RE: whole brain radiation

by miamutt on Thu Jun 06, 2013 09:08 PM

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i don't have GBM, my tumors are mets from lung cancer, there are two very small nodules.  thinking whole brain so that if there are small non seen nodules, we shrink them then even "playing field" hopefully shrinking the two that can be seen and then if need go after them

same horrible side effects?

RE: whole brain radiation

by SarahGrey on Thu Jun 06, 2013 10:17 PM

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I would guess it has the same effects... I know what you mean but... Please check into it first and specifically ask your doc about cognitive issues that can arise... Also, before you commit, specifically google whole brain radiation and cognitive problems and also google radiation necrosis. Oh, ask your doc about necrosis too... So much can go wrong... On that subject, read the 'distance runner update' that was posted here a few days ago... :(

RE: whole brain radiation

by ourVictory on Thu Jun 06, 2013 11:03 PM

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My  experience with my GBM stage IV and radiation is that sterostatic?/23 rounds aprox during 6 weeks anf 5 more two weeks ago radiation plus gamma knife around 18 months ago do cause cognitive problems temporarely? but do minimizes the effects eventhough it did created some - like not fully remembering 4 things i was told to repeat. Im not fuLLY RECOVERED BUT DOING A LOT BETTER than the first 8 weeks and first  few months. I was also told by my NO and Neiurosurgeon that around 20 yrs later they will create new tumors. Also that it takes months to have a visible effect on my tumor.

RE: whole brain radiation

by Bee_Rich on Fri Jun 07, 2013 02:33 PM

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make sure to get muliple opinions from different major brain tumor centers. Be sure to get appts wit the surgeon AND Nuero-oncs at each center.

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