brainmetsbc.org

Jane's whole brain radiation

Esta página en Español

I did not have anything recommended other than whole brain radiation because there were eight brain mets.  I knew something about the Gamma Knife, but the radiation oncologist did not feel that was even an option in my case.  I was so unnerved by having brain mets, that my concentration was not great, as it was only an hour after I had received the news.  I remember just agreeing with her recommendation. 

The treatment itself was not difficult.  The first few times I was very anxious because of the claustrophobia and having to have a mask over my face.  The staff was very kind about not hooking the mask to the table and using tape instead, so I had the feeling I could take it off if I wanted to.  (I never did) Once I began to get comfortable with the mask and the short time I was under it, it became much easier.  I closed my eyes the entire time, and had a prayer I repeated over and over.  You get used to the noises and know when it’s almost over.  Plus having the staff talk to you and tell you things like “20 more seconds” helps a lot.  If you weren’t claustrophobic, the radiation would not be a big deal.   

I have had a number of side effects.  My stomach was impacted by the steroids and bothered me for several months.  I had an endoscopy and it was irritated, but nothing more.  Ever since (20 months) my stomach has been more susceptible to excess acid.

I did lose all my hair and it has never been the same.  It started growing at 4 months post-radiation, but only grows a quarter of an inch (at most) a month.  There is a strip on top of my head that has only grown about three and a half inches in 20 months.  The rest grows slowly and is very coarse, dry, and thick.  The hairdresser claims it is the strangest hair ever!  My chemo hair (lost it three times) grew in very thick and curly each time.  

One of my ears became plugged immediately after the radiation and I had a tube put in.  There was no more problem. I suffered from quite a few headaches after the radiation.  This was complicated by the fact I had TMJ that was not diagnosed until about two months post-radiation.  The treatment for that improved my headaches immensely. During the radiation I had mouth sores, but they said that was from the steroids.

The most troublesome long-lasting effect has been short-term memory loss.  It is very bothersome to me, but most people do not notice it.  I am 59 now and other people have their forgetfulness issues, too.  The most troublesome to me is how quickly a thought can just be “gone” from my memory when I wanted to say something and was already to say it!  I have seen a neurologist for a complete evaluation, and he feels my brain is about 10 years older than my physical age.  This is based on the evaluation and the white/gray matter in my brain. I work on crossword puzzles and memory exercises, and try to challenge my brain to keep it from losing more memory.  

Another long-term effect was balance.  It has not been severe, and I notice it more than anyone else.  When I am not paying attention, I can “weave” to the right. I have lost my confidence to ride a bike after falling twice, and I always hold on when going down stairs.  I recently completed physical therapy at a Balance Institute through our local hospital, and have improved my balance.  I do exercises for balance, lots of walking and exercise in the gym on the elliptical and stationary bikes.

I feel good about the lack of brain mets at this point.  I realize they will most likely come back at some time, but then I can do Gamma Knife or another radiosurgery.  Overall, my health is good and I feel healthy.  My biggest fear is the memory loss and if it will continue to get worse.   Of my 6 years with mets, this side effect has been the hardest of all and can depress me the most.