whole brain radiation

What kind of tumor?
I had a tumor sitting atop my cerebellum the size of a lemon smashed flat. It was a grade II ependymoma. I only ask, because the cognitive deficits leading up to it were dismissed by me as part of getting older, working and raising kids. I have had significant post treatment problems. My memory stinks. I have massive fatigue. I had the surgery, then radiation. I felt great after the surgery but radiation changed all of that. I am in the process of learning about disability and finding out my options. I had integrated beam radiation. It was targeted because my tumor was identified and treatment was specific. I hope he comes through okay, but MD's minimize the extent of the side effects.

Mama G said:

update?
anyone else care to share their experience with whole brain radiation?

WBR/PCI
Zedgal is right on target when she says doctors play down the side effects. My Radiology Onc made it a point to tell me about the possible side effects, and then basically said the studies about memory loss and deficits were flawed, because they were mostly done on people who were in the age group that might be suffering memory problems prior to treatment. I fell for it, and even repeated it (here, I think). Suffice it to say that I almost regret having it done. I say almost, because I really didn't have much choice at the time.

It took a few months for me to notice that I wasn't able to concentrate on things very well, and was becoming very distractible and forgetful, no longer able to really multitask as before. I began noticing hearing loss, too, but I'm still unsure if it's from the radiation or my first-line treatment with Cisplatin.

Thankfully, some of my hearing has come back. I think my short-term memory is also improving a little - someone else said it's not so much memory loss as memory delay - retrieval is slower than it used to be.

I need to write things down more than I ever did, because if I sit down at the computer to look something up, it's a given that I'll get side-tracked and forget what I was looking for. I also make typos more than I used to, and transpose letters accidentally (I edit before posting!).

So, I had the WBR after surgery...I can't go back and un-do it, and I'm learning to deal with the problems it caused - that's my story.

You didn't say why you're asking - is WBR something you're facing?

Best to you,
stayingcalm

stayingcalm said:

WBR/PCI
Zedgal is right on target when she says doctors play down the side effects. My Radiology Onc made it a point to tell me about the possible side effects, and then basically said the studies about memory loss and deficits were flawed, because they were mostly done on people who were in the age group that might be suffering memory problems prior to treatment. I fell for it, and even repeated it (here, I think). Suffice it to say that I almost regret having it done. I say almost, because I really didn't have much choice at the time.

It took a few months for me to notice that I wasn't able to concentrate on things very well, and was becoming very distractible and forgetful, no longer able to really multitask as before. I began noticing hearing loss, too, but I'm still unsure if it's from the radiation or my first-line treatment with Cisplatin.

Thankfully, some of my hearing has come back. I think my short-term memory is also improving a little - someone else said it's not so much memory loss as memory delay - retrieval is slower than it used to be.

I need to write things down more than I ever did, because if I sit down at the computer to look something up, it's a given that I'll get side-tracked and forget what I was looking for. I also make typos more than I used to, and transpose letters accidentally (I edit before posting!).

So, I had the WBR after surgery...I can't go back and un-do it, and I'm learning to deal with the problems it caused - that's my story.

You didn't say why you're asking - is WBR something you're facing?

Best to you,
stayingcalm

hi
I don't think that it would be necessary to go for WBR if you can go for gamma knife, I've been reading a lot about the gamma knife and I learned that It can target multiple tumors in one session, try asking around.

regards

RobinY said:

Anyone else dealing with the WBR side effects
My loved one had whole brain radiation following surgery to remove a metastatic tumor. (She had breast cancer that spread to her brain and lungs) She is two years post radiation and is now having cognitive problems.

She has a lot of short term memory problems and even some dementia now. She has done some really strange things and seems to be getting worse very quickly.

Is anyone else going through this?

When we first found out that the cancer had spread, we figured we needed to do everything they said to have the best out come. To be honest I don't remember anyone telling us about these possible side effects.(We heard about the short term effects, but not these longer ones) Now I'm starting to see more information and studies that say WBR causes these side effects in people. One website said "Reports of development of severe radiation induced dementia have varied between 11% in one-year survivors to 50% in those surviving two years."

Is there anything we can do? Our doctor says to just try to stay mentally active, but are there any other resources anyone is familiar with?

Late Delayed Side-Effects
Hi RobinY

Welcome to CSN I've also read that in some website too that it can cause long and short-term memory loss and dementia, but from the stories that I've read most people who experience those side-effects are people aged 40 and above, I had finished my WBR last week but before I had my WBR the doctor already warned me about those side effects,

Try to read this thread, this could be very useful.

http://csn.cancer.org/node/145921