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Whole Brain Radiation Experiences?

NJCANCER123
Posts: 1
Joined: Sep 2013

Wife had second surgery to remove small superficial tumor last month on brain and now Dr's are suggesting whole brain radiaition (WBR) to eliminate any small cells that could remain.  Her first surgery was in the same place last August and followed up with Gamma Knife last September.  Looking for some help with anyone who had WBR and concerned potential side effects. 

Background:  49 year old female.

* All started 3 years ago with surprise colon cancer detection after going in for diverticulitis surgery.  After resection,  cancer returned to same area after chemo and radiation of abdomen one year later.  Now seeing small tumors in lung and kidney and been on chemo (Avastin) to control for past six months.   Last August treated and removal of small brain lesion with new small leasion just removed again last month. 

Because of size of cavity old and new another gamma knife is a concern. 

Any help would be appreciated.

 

cursedby3's picture
cursedby3
Posts: 1
Joined: Aug 2012

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's picture
shadow01
Posts: 15
Joined: Oct 2008

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.

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