Whole Brain Radiation Side Effects??

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Whole Brain Radiation Side Effects??

by Mclfighter on Tue May 20, 2008 12:00 AM

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My mother-in-law is about to have whole brain radiation (begins next week) for a metastatic brain tumor that came from esophageal cancer. She first had the brain tumor on her cerebellum in January and it was resected and completely removed. We chose not to do whole brain radiation because we were not convinced that the benefits outweighed the negatives, but 2 months after her surgery, the tumor was back and at its original size.... which is pretty much unheard of!

So, now we have to do whole brain radiation and we are nervous. Have any of you had whole brain radiation or know someone that did? What were the major side effects and complications that were experienced? Did it keep the tumor from recurring?

Thanks!!

Lia

RE: Whole Brain Radiation Side Effects??

by peachfuzz on Mon Jul 28, 2008 12:00 AM

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On 5/20/2008 Mclfighter wrote:

My mother-in-law is about to have whole brain radiation (begins next week) for a metastatic brain tumor that came from esophageal cancer. She first had the brain tumor on her cerebellum in January and it was resected and completely removed. We chose not to do whole brain radiation because we were not convinced that the benefits outweighed the negatives, but 2 months after her surgery, the tumor was back and at its original size.... which is pretty much unheard of!

So, now we have to do whole brain radiation and we are nervous. Have any of you had whole brain radiation or know someone that did? What were the major side effects and complications that were experienced? Did it keep the tumor from recurring?

Thanks!!

Lia


Lia, I hate to be the bearer of bad news, but the side effects of whole brain radiation I found (and am still finding) to be pretty horrible indeed.  I finished my last of 10 treatments a month ago and didn't start to feel bad until it was all over.  Then my hair fell out, my scalp starting hurting like it was on fire, my forehead turned bright red and had sores all over it, and I puffed up like a donut -- face, stomach, tongue.  I haven't had an appetite since and am bone tired all the time.  I just want to sleep and sleep and sleep, and my eyes are heavy and swollen, even after 8 hours of sleep.  Concentrating is difficult for any length of time, and I can't handle stress any more.  I just want to be alone in my bed.  My balance isn't good, and I bump into things.  All of these symptoms are getting a little tiny bit better with time, but I'm finding the heavy eyes and fatigue (now that the scalp and forehead are better) are difficult to deal with.  I don't feel as though I will ever have energy to do things again or feel normal. 

 I had non-small cell lung cancer.  They did chemo, radiation, then operated in 11/06.  Had more chemo in the Spring, after major surgical complications took time to heal.  Went back to work and then, pow -- nine months later, I couldn't type!  Had a brain CT and there it was -- small but there.  They gave me no options, and I didn't even bother to research the side effects, as I felt I had no choice with Kaiser.  Now I wish I had asked more questions.  Maybe it could have been gamma-rayed in the first place instead of as the next option -- "after it grows back in six months."  (My cheerful/sarcastic and unfeeling oncologist's words.) 

 I hope your mother-in-law has had a better experience than I did. 

 peachfuzz

RE: Whole Brain Radiation Side Effects??

by GiGis_Daughter on Tue Apr 21, 2009 12:00 AM

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Lia,

My mother completed her radiation years ago (maybe 4) - which was a preventative measure due to her diagnosis and treatment for lung cancer. Doctors kept telling us because of the aggressive nature of the lung cancer it would want to move to her brain after the chemotherapy. So we moved forward with the radiation treatment. Of course we didn't want the cancer to come back! After rounds and rounds of radiation Mom seemed fine, we made it to a year cancer free - and the only thing that was wrong was her hair never grew back.  

 We are now 7 years into this and my mother is gone. She is physically here, for all purposes, although she picks at her food like a child, can't hold the phone to talk unless directed to continue talking, can't use the restroom, can't walk, can't sit down, can't get up, can't go anywhere - and she still doesn't have hair. My Mom will be 67 years old this year, but has the mental fortitude of a 5 year old and the body of someone in their 90's. 

 I blame the doctors and the radiation. My father says they did review this small little side-effect, mentioning it I'm sure with a small asterik hung in the air.  They did not give us more information, more choices.  If we had known there was a chance of her quality of life diminishing to this extreme, I would have taken more chemotherapy any day. 

We are now looking at assisted living facilities for my 67-year-old mother. We are dealing with physical therapists, nurses, anyone to help us get inside her head and wake her up to what is going on around her. 

What's even worse, I live away from her - a 4 hour direct flight! What's even worse than that, the doctor's are saying there's nothing wrong with her, there's nothing they can do. They've been saying this for the past year and a half as we just watch her deteriorate into absolute nothing. 

I know it's more than a year since your request and I do hope and pray that all has gone well with your mother-in-law's treatments.  This is one situation where doctor's need to make sure they read the fine print, how much radiation should we really be giving this person? What's the carpenter's saying - Measure twice, cut once. Well it's a little late to say OOPS on this one. What's done is done, but I promise you this, if I ever get the diagnosis that I have cancer, the doctor's can just leave me alone. I'd rather the cancer kill me and I be aware of my surroundings and am able to go to the bathroom by myself vs. the life after radiation.

RE: Whole Brain Radiation Side Effects??

by Csimowitz on Sun Aug 24, 2014 03:40 AM

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Thanks for your info as the oncologist has recommended whole brain radiation to my long term partner. He has a recurrent primary central nervous system lymphoma and was diagnosed with methotrexate toxicity. This is a salvage treatment and the side effects terrify me. What you spoke of is exacty what I am afraid of- the loss of quality of life. He is sixty years old and I truly believe that quality of life is paramount. The doctors believe that ridding you of the tumor is a success, without discussing quality of existence. If I am brave enough I will show him your email prior to our visit. Thanks again.

RE: Whole Brain Radiation Side Effects??

by lilibaya on Wed Jul 22, 2015 12:21 AM

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My father had whole brain radiation almost a year ago. In some ways his current state sounds very similar to that of your mother, similar symptoms, same age. I am so sorry to hear about your mother becuase I can really sympathize. My dad's cognition has a improved some but it is heartbreaking. We did not understand/ were not informed about the potential effects of this treatment. I very much doubt my father would have chosen this if he had known. The cruelest twist is that it turns out he was misdiagnosed with cancer. (clots in his brain where thought to be tumors) As far as we know, his current state is nearly entirely the result of his aggressive whole brain radiation. His situation is particularly unique given the misdiagnosis but I wish I had known more about whole brain radiation.

If anyone has seen a doctor who has been helpful with treating the after effects of whole brain radiation please let me know. I am desperate to find someone who has experience with similar patients and is willing to try to improve quality of life for my dad. 

RE: Whole Brain Radiation Side Effects??

by Gdpawel on Mon Sep 28, 2015 04:19 PM

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I see that the previous link expired.

Alternative to Whole Brain Radiation.

http://cancerfocus.org/forum/showthread.php?t=3665

RE: Whole Brain Radiation Side Effects??

by Wisteach on Sat Feb 13, 2016 05:55 AM

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My mom is 77 and experience PCI side effects 5 years after being treated. She had sclc but it was small and successfully treated, docs scared us and she agreed to WHole Brain Radiation. Physical Symptoms started 2-3 years later with cognitive decline, loss of driving, balance, and she started shuffling to walk. It got progressively worse. A 15 months ago she could walk a couple of city blocks slowly and with a shuffling hair but alone (she was a fit senior to start). Today she can hardly get up from a chair alone, use the bathroom or Dress herself. She has fallen 2-3 times a day in the last month and has just moved in with bc my dad couldn't care for her. She shuffles so slowly with a walker and is very immobile, she cannot care for any of her own daily living tasks. As said before, these effects were not covered in any detail. She had two additional lung cancers that were treated throughout years but this is what is debilitating her the most. I would not recommend the whole brain radiation whatsoever. They saying is widely advised but these symptoms have taken Away her quality of life tremendously.
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