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radiation to the brain--PLEASE HELP!!!


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Dear all,

I've posted this in other sections, as well. Please forgive me--I am just desperate for information.

My soon-to-be mother in law is scheduled to have radiation to the brain for two weeks starting on Monday at Memorial Sloan-Kettering.

She went to see an alternative doctor (he is a psychiatrist who has branched out into alternative cancer medication) for advice on complementary treatment (nutrition, etc.) today and he told her that she may want to FORGO tradional treatments (i.e.--chemo and radiation). He made her EXTREMELY scared that the radiation may damage her brain (she may be a vegetable if she has these treatments) and she is considering cancelling her scheduled treatments.

She has been told by her onc. that the mets to her brain are NOT yet substantial (she does not have any symptoms--swelling, headaches, is not on meds for it).

a) I know that MANY of you have undergone radiation to the brain and are still wonderful, intelligent, functional creatures. Could any of you share your experiences with me so that I may pass them along?

B) If any of you might be willing to speak with her about your experiences, would you be kind enough to PM me? She is a very religious woman who responds better to speaking to other people than reading my pages of research.

Regardless, ANY advice or guidance would be most appreciated. Geoff and I are really scared by this unexpected turn of events.

Thank you.

Melinda

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Melinda,

The thought of radiating my brain was a scary one. I was going to do PCI but 2 brain mets were found. We went ahead & did whole head radiation x 18 about a month ago followed by stereotactic 2 weeks later. I have no brain mets & feel quite well. There is fatigue & short term memory loss that I experienced but they both seem to be getting better. Hope this helps. I'll be sending positive energy your way. Rachel

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Melinda,

My husband had whole brain radiation (2 weeks) plus Novalis (pinpoint radiation) and he is fine. I was a little scared for a while after the treatments because he was kind of slow to respond and didn't seem to quite "get it" sometimes, but this passed after a few weeks. He did lose all of his hair before the whole brain radiation was even finished, but most of it has grown back now (not that he had that much to start with :P . Before he had it done, I had read that it can cause some damage like you describe, however, the radiation onc, who we really trusted, said that if that happens (which is pretty rare), it's usually several years down the road. Without the WBR, and with 8 metastic tumors in his brain, he for sure wouldn't even be here "several years" down the road. I said: "Zap him!" :lol:

Peggy

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Melinda,

You state that the future MIL is a very religious person - have you thought about speaking to her clergyman? (I would, however, suggest that you test the waters with the clergyman and get his/her opinion on the topic before suggesting it to MIL - wouldn't want to have someone reinforcing the shrink-turned-witch-doctor.) I know that there are home visits involved with most religions when it is needed, sounds like you could arrange a heart-to-heart with someone "closer" to God's ear....

I believe that right now she is running a little scared and may actually believe that the "path of least resistance" is the way to go, NOT weighing out the big "cons" associated there. Does this guy have ready and correct stats to back up that snake oil?? Really sounds fishy to me - and like a "Law and Order" rerun I saw - the patient had breast cancer in that show...

Good luck on turning this runaway team around!

Becky

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Melinda,

I posted this reply on another related brain radiation post, but wanted to share it with you as well. I'll be keeping you and your future MIL in prayer.

I haven't posted in awhile but with all the questions surrounding brain radiation I feel the pull to share my thoughts.

When my FIL was faced with this decision, I researched all I could but mainly looked to what folks on here had dealt with. He decided to do the PCI after his scans were clear last May. However, nobody at the drs offices shared with him that they were going to have to strap his head down in a mask like thing to be sure of no movement. It made total sense though and he pushed aside his leariness and gave it a try. Unfortunately he had a major anxiety attack the first time. They offered to give him some meds to combat the anxiety but by Father's Day he announced his decision to not do the PCI after all. Within a month of that decision, July 18, he was dxd with 8 mets to the brain and instead of the PCI underwent the full brain radiation. Somehow the anxiety attacks subsided as we were now in the big serious battle. We also learned he had mets elsewhere as well. Sadly, we lost him on August 13 to this damn disease. I have to admit that my husband and I wonder if he'd done the full PCI if we would've had longer time with him. We would've taken even a few more weeks with him and treasured them in our hearts as much as a few more years. Each day is just so precious. We never had a chance to really see how the radiation affected him because everything happened so fast.

I do want to add that I have a student right now(I teach middle school) who has fought brain cancer for two years. He has had the full brain radiation as well as chemo. He is now in remission(Praise God!) and he is furiously bent on being all that he can be. His brain takes longer to process some of the info. Getting stuff from the brain out through hand and pencil takes longer, but we have our ways to help him cope. Bless his heart he doesn't want too much special treatment, but he has allowed himself one more day on assignments finally after my offer of this in the fall. He is my brightest student-out of 80 kids I teach-though not the fastest. So I hope he is a testimony to the idea that brains can survive this radiation. It seems to me from what I've seen in him and read about by others here that brain function will be diminished only in certain areas and coping with those are worth it.

Of course, doing PCI is a decision each patient has to make for themself, I know, so there's only so much folks here can say or do. I just thought I would add my two cents in case they would be helpful.

God bless~

Karen M.

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