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Proton or photon radiation for meningioma

Brain Tumor | Last Active: Jul 19 2:12pm | Replies (24)

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Profile picture for santaflavia @santaflavia

Good luck to you. Where was your tumor located? How long ago did you have the surgery? Do you feel
like you are all recovered from the surgery?

How am I feeling? I think the best answer I can give you is "more tired."

laughing.....I am trying not to attribute every little thing that happens to the radiation......
but sometimes it is hard to know .......itchy scalp for example....but that could be from post-chemo hair growth or hot humid weather......I did switch to "baby shampoo" as recommended by a nurse who did "patient education"

I do/did see blue flashing lights during the treatment itself. Neuro ophthalmologist warned me about that.

I also smell a very strange smell (first time thought hair was being singed) during the treatment.

Otherwise, I would say, so far so good and fingers crossed.

My meningioma is on my optic nerve sheath and I was told to expect total vision loss in that eye. I am holding on to some irrational hope that won't happen.
Have you done any reading or had a "patient education" session? I understand that side effects can be
short, medium and long term. Sorry for going on a bit.....I wish you the best. I liked what Randy Shields wrote above about diet, exercise and good attitude. I found I felt best when outside doing yard work. A good distraction and nature is good for you in my opinion.

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Replies to "Good luck to you. Where was your tumor located? How long ago did you have the..."

I’m glad you’re doing ok so far. Hopefully no vision loss will occur. My tumor was a large 6 cm+ located in the right frontal lobe. Because of the size and location I was opened up from ear to ear at the hairline leaving an 11” scar which itches a lot. That is the only effect of the surgery that I notice. It’s been 5 months since the surgery and I’ve been exercising like a fiend to be as strong as possible going into the treatments. The patient education is supposed to happen at the setup appointment. I had a second opinion where I got a packet of information on what to expect so I’m somewhat informed. But everyone responds differently so we’ll see what happens. Fatigue does seem to be the most common side effect. All the best.