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Living with Side Effects of Full Brain Radiation

JeanneG
Posts: 2
Joined: Jan 2005

My husband was diagnosed with Primary CNS Lymphoma 13 years ago and we were told he would not survive more than 48 months.

He received many different kinds of chemo (I remember vincristine, methotrexate, procarbazine - and there were more) - and full brain (and eye orbit) radiation. The good news: HE'S ALIVE!!!! The bad news: we're now seeing (1) brain atrophy at a very advanced rate; (2) absence of brain matter (apparently where there were lesions, and the radiation zapped brain matter) - his remaining brain has taken up the slack; (3) white matter disease (actually, not sure this is the result of the radiation, or just another problem) - it's completely engulfing his brain, causing seizures.

He is suffering from muscle dysfunction - he is unable to walk more than a few feet without his legs just giving out; he has lost the ability to control his urinary muscles; he is losing the ability to lift things weighing more than a few pounds; he leans to one side because he no longer has the strength to keep himself upright. When he CAN walk, he shuffles, sometimes in an uncontrolled forward motion where I think the end result is a face-plant; he can no longer lift his feet more than one or two steps.

He is beginning to have memory issues, and some cognitive issues - that is, he sometimes cannot process what's being said to him. If he REALLY concentrates, and tries very hard, he can sometimes figure out what's being asked of him - but sometimes he seems totally blank when we talk to him. He just doesn't understand.

His first major seizure actually happened on a 5 hour flight, within 20 minutes of takeoff - and lasted almost the entire flight. He was mostly unconscious - with moments of lucidity - but he had no idea where we were, or why we were on a flight (his mother had died and we were flying to her burial). He couldn't say who I was (we've been married for 28 years), or what my name is. At one point we thought an ambulance would be meeting our flight, but he came out of it enough that he insisted we just go to the hotel so we could be at the cemetery for his mother the next day. It was the beginning of our decent into this land of "living with the side effects of full brain radiation."

Is anyone out there who is coping with this? I don't know if we need physical therapy - or whether we can take classes or read books on ... well ... what we're supposed to DO. How can I HELP him? What can I expect? Will he get better? Or worse?

God save us - just give us the grace to do what we need to do.

Chris_W
Posts: 28
Joined: Apr 2011

He's so lucky to have such a loving wife, as a sufferer myself, I can tell you that is the single-most important thing... to be loved. My faith in humanity is always restored when I read posts like yours about how you care so much.

I refused radiotherapy for the reasons you described. I don't have a partner, I have many great friends and a fantastic mother, but I do fear my future alone. I am very serious, he is a very lucky man for so many reasons. He has outlived the prognosis (I hate when doctors say that kind of thing), that is huge.

From what you wrote, it seems like you really need to be in a highly specialised centre that can provide a nutritionist (memory can be improved with certain foods), a neuropsychiatrist, and someone who can answer all your questions. I turned down radiation because I was 38 at the time, and I was told that the damage would appear by the time I turned 50, and they couldn't be specific about what side-effects these would be.

My advice to you would be to show him the love that you obviously have for him, to find that highly specialised hospital, to make sure he gets lots of rest, and not to force him to walk. Recognise his frustrations, but don't pander to them - just let him know it's all ok and there's no reason he needs to walk fast and that it's ok that he forgets sometimes.

Sometimes we go through all the surgery and treatments, and then get forgotten by our medical teams. Don't let that happen, there are meds to help with memory, better seizure drugs (what does he take?), meds to help with dizziness, etc. I take a number of meds, but they all serve their purpose, and I am going to be given more soon.

I'm rambling on, but my main point is that you have more power than think. Rant and rave with friends, but never show him your frustration or upset... I worry when my mother worries, so he would worry if he sees you worry :)

Hugs out to you from Canada

Chris

leprechaun2
Posts: 76
Joined: Jul 2011

Jennie, my hub had same treatments, dx, 6/08. He's having all the same symtoms, but its only 3 yrs. Each mri, every 2 months, shows more problems with the white matter. But he hasn't had seizures; since first one 3 yrs ago he's been on keppra.

Walking is difficult and pt helps with some of it but if he's tired or stressed he can't walk a block. He leans and shuffles too. The fast forward motion I see here is from being up on his toes instead of having his weight on his heels. THe pt works on things for his brain too, like having him watch his hands as he swings them across his body like he's holding a sword and playing zorro. Dry erase boards help him remember what to do when he doesnt know. We have one in the bathroom and one in the kitchen.

His bp is low and when he doesn't drink enough fluids he can't understand either, or talk to tell me what is going on. Is there a chance his confusion might be something like a mini seizure?

He just started a med to help relax his bladder so he has more control. It gets absorbed through his skin so it doesn't interfere with brain function.( I guess some of the meds for this add to the confusion).

hub has also been on provigil to help him think more clearly since the whole brain radiation - 25 days worth. it made an amazing difference.

I have stopped working to be with him bec he cannot be alone for too long. He forgets to eat, drink and he forgets where things are. I push him to walk, and do pt and brain work and I will go to whatever doc he needs to fight these side effects as long as possible.

I am sorry for what you are both going through. I can truly say I understand. I cannot put a clock on this. I just know some days I have the strenght to fight the symptoms and
some days I am overwhelmed. I am talking to a therapist to deal with this. God bless you for getting this far!

I hope it helps knowing you are not alone. I am here regularly and will respond as I can.
May you each receive the grace you need.

connsteele
Posts: 232
Joined: May 2011

I understand how hard it is to be the caretaker for someone fighting a brain tumor. I feel the same way. Some days I feel that I'm on automatic pilot and other days I wonder how long I can continue.
I hope and pray that you find the strength to continue. From what you've described, you are doing a wonderful job and should have no regrets. Your husband is fortunate to have such a caring and dedicated caretaker.
Connie (son dix AA3, inoperable, on 4-13-11, age 34)

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

Im sorry to hear about what your hubby is going through, I had WBRT too last year and Im only 23 back then but I may face the reality that I might go through the same side effects in the near future. You mentioned that your hubby had Methotrexate, from what I'e read WBRT and MTX is a bad combination. Will pray that your hubby will recover from the side effects.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

I'm so glad to see your post!I hadn't seen any comments from you for a while and I wondered what was up. Great to hear from you! How are things going for you?

Love and blessings,
Cindy in Salem, OR

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

I've been doing well for the past year since I finished my WBRT treatment and a month out of chemo. Tumor is still in my head but my rad onc and oncologist said that It was stable. I took a break from going to school this semester because chemo totally made me get tired easily, but things are slowly getting better now. :)

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