Whole Brain Radiation Experiences?

hello NJ...

I'm not sure if I had whole brain radiation. What I do know is that they put 3 small tattoo/ink marks on my scalp and aimed at them after my third craniotomy  to remove my grade 2 astrocytoma, That occured in 1985 and I was 17 and I am now your wife's age. I can't say it saved my life, although it could have kept my tumor from recurring. It did also stop a lot of my hair from growing back...forever..sigh. I do believe that it has caused cognitive issues with me and also put a toll on my immune system. I have gone on to have 3 wonderful sons and live..so far..for 32 more years; so  considering the odds, i would do it again. Maybe the radiation has changed from years ago. Ask about long term effects and see a nutritionalist or a naturopath for guidance to keep her immunity up. God bless. Lori

shadow01 said:

Whole Brain Radiation Experiences?

During my first cancer (testicular), the second met was to my brain---three tumors.  After the three brain surgeries, I had whole-brain/max-dose radiation therapy.  Nobody said anything about it then, but a few years later, I did my own research and found a list of my symptoms ... my list matched the one I was reading (which was for damage to the pituitary gland).  Well, after showing my list to my oncologists (I was on Medicaid back then, and couldn't find a primary care doc who would take Medicaid), I finally got a referral to an endocrinologist. 

The endocrinologist (who initially agreed with what I'd come up with) sent me off to get some blood labs done, and at my next appointment, announced that we were both wrong, that it wasn't the pituitary, but he'd found the problems.  One was low testosterone (it was, after all, testicular cancer).  The other was low thyroid hormone (Free T-4), and he said that my thyroid was almost certainly damaged by the radiation to my brain.

So if you haven't done so already, you might want to ask about that.  Low thyroid hormone has all kinds of nasty effects, including fatigue and, if I remember right, depression.  If this happens after her radiation therapy, she will probably have to take something like Thyroid, which I'll have to be on for the rest of my life (Synthroid isn't bad...no nasty side effects, at least none for me;  you just take it first thing in the morning---no other meds until 30 minutes later, and nothing to eat or drink (except the water to take it and any other meds 30 minutes later) for, last I was told, 45--60 minutes after the Synthroid (or longer, if the 2nd batch of meds has something with a delay attached, as one of mine does).  You'll need a doctor who can mange this, too (my first doc for this stuff was an endocrinologist, and now it's my primary care doc, who is also an internal medicine specialist.

My aunt was diagnosed with NSC Lung Cancer Stage IV last March and it was a complete shock to all of us including her.  She has undergone a few different types of chemo drugs without much response and recently decided to take a trip to Cancer Treatment Centers of America for a second opinion.  They found spots in a few new places and also informed her that she has cancer in the lining of her brain and cerebellum.  They have urged her to move forward with radiation therapy of her whole brain, and went ahead with fitting her for her mask for treatment before sending her home prior to her next trip down.  My aunt has adamently refused radiation therapy throughout this process.  A big issue for her has been quality of life vs quantity of life.  My concern is that I am reading about all of the terrible effects of this therapy and right now, my aunt seems just like her normal self.  Even through every chemo drug-she hasn't had the worst side effects.  She has her first grandchild due in about two months and we want her here and in her best possible shape to hold that baby when it's born.  Does anyone have any insight on whether whole brain radiation therapy is so debilitating that she will likely be bedridden by that point.  I just can't handle the thought of my aunt going from her seemingly normal self right now to truly seeming like a dying cancer patient all because of a treatment that she has tried to resist all along anyway, when I've been told that in reality it isn't going to stop her cancer either way.  She has an extremely aggressive form and rare form and has already been told that it will never go into remission at any point, so at this time we are only looking at prolonging her life with any treatment we use.  Any advice that anyone can offer is greatly appreciated.