CharlieD Brain MRI Update 4-28

[CharlieD]

Had consult with Radiation Folks at Roswell Park. They found at least one more small Met on the MRI Film and were suspicious of additional microscopic cells that are not yet visible. In light of that, they recommend WBR first in an attemp to kill anything not showing yet and if anything remains after the WBR, Gamma Knife it. Sounded reasonable to me so I'M leaning on starting it next week locally. They explained in detail the possible side effects but felt that they were out weighed by the advanages of stopping more mets before they got established.

Is there anyone out there who has had WBR that would be willing to share their experience? PM me if you prefer or just post it here. Thanks in advance.

God Bless

CharlieD

[karenl]

Hi Charlie

Mum had WBR in Jan/Feb of 2005 for 8+ mets. We were all really worried about it, but she handled the treatments very well. She had a mask made of mesh to keep her head still, and the treatments themselves are very short in duration.....I think the actual radiation only lasts a minute or two! Mum did become very fatigued in the weeks after treatment was complete. Her first scan about 4 weeks after treatment showed most of the spots had reduced apart from one large one which was stable. At a follow-up scan 4 months post-treatment, ALL of the small spots were gone, and the large one had reduced in size.

I hope that it works well for you,

Wishing you all the best

Karen

[mamasbabygirl]

One thing that I read is that right after you have WBR, your Dr. can have you evaluated for hyperbaric oxygen treatment to ty to restore the brain cells quicker. I always wonder if we had known that if mom would have had the horrible mobility issues from the radiation necrosis. I imagine the Dr. would say it is experimental, but I would at least investigate it yourself and then push for it if it has any chance of helping your brain cells heal.

Which arm is numb? Is it constant or does it come and go? Just curious...

[Wendy]

Charlie,

I cannot offer any info on wbr but wanted you to know that you are in my prayers.

Wendy