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Hello everybody,
Most of us (myself included) have been pretty scared at the prospect of whole brain radiation. The potential side effects are scary and there are definitely some folks who have had a very bad experience. I just finished my 14-day course of WBR, and my experience was not-so-scary after all. I wanted to share to encourage others, both now and those who might stumble upon this post when searching the board for information in the months and years to come.
Hello everybody,
Most of us (myself included) have been pretty scared at the prospect of whole brain radiation. The potential side effects are scary and there are definitely some folks who have had a very bad experience. I just finished my 14-day course of WBR, and my experience was not-so-scary after all. I wanted to share to encourage others, both now and those who might stumble upon this post when searching the board for information in the months and years to come.
Standard disclaimer…every treatment is individual; this post is the experience of THIS individual. Your mileage may vary.
I had a 35 Gy dose, segmented into 2.5 Gy/day for 14 days (weekends off). Therefore it took just under 3 weeks to finish. Each dose takes less than five minutes, room entry to room exit. The radiation itself is delivered in two pulses of 20-30 seconds each. The only weird thing is that the radiation tricks the brain into seeing and smelling things that aren't there. I saw a bright blue light and smelled ozone during the radiation pulses, but to my very great surprise, the technicians informed me that neither one was actually happening.
I began on a Monday. My hair started to fall out on the second Sunday; by Monday (dose day 11) I needed a scarf to go to work, and on Tuesday I had my friend buzz it because I was shedding everywhere.
I was warned that fatigue was a common and likely side effect. I had not had significant fatigue. I have been careful about getting to bed a little bit earlier and haven't had an issue. Granted, I am an athlete, but I was able to continue working out several days each week, including one workout each week longer than an hour. I have had no issues continuing full time at work.
My eyes, ears, and scalp have become much drier than usual. My contacts seem to "goop up" at night, making my vision a little fuzzy. I was told that a feeling of plugged ears was somewhat common because the ear canal would produce thicker wax than usual. For me, it's just been more like my ears are painfully dry. The radiation oncologist recommended a drop of baby oil; this helps a little but I need to find unscented mineral oil (baby oil is fragranced).
My scalp and forehead are a little red. My scalp got itchy almost right away, and a short time before my hair started falling out, my scalp became painfully sensitive. It's getting better, two days after the last dose, but at this point I can only handle my wig or even a hat for a few hours at a time because my scalp is so sensitive.
So far, I don't feel any stupider.
The radiation oncologist knows I research on my own pretty heavily, and he was quick to reassure me that a certain study that's out there citing a 50% rate of dementia after WBR is considered invalid because it combined WBR with radiation sensitizing drugs, which is not done any more. So there's my experience. I wish nobody ever NEEDED to do this, but if you do…realize that it might not be as scary as you fear. It wasn't for me.
KatyWI
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