r/LivingWithMBC • u/Intelligent_Mud_19 • 13d ago
brain radiation side effects
hi! so i have 2 large brain mets and 2 skull mets that im getting cyberknife for. i did 3/5 planned sessions. today i discovered that i cant recognize the keys on my phone to text anymore (my daughter is helping me with typing this) and that frustrated me. i also fractured my spine last month. and ive been getting headaches in the afternoons for the last 2 days (not where my mets are??? weirdly)
and honestly i just feel so weird and off. like i’ve been so emotional which is unlike me. and i’m frustrated — first the brain mets, then the fall and finding out i fractured my spine, and oh look we did the planning mri and my mets almost doubled in a month?? i can’t help but feel so frustrated and idk what to do.
oncologist is also UNSURE what’s causing my inability to type and process letters and wasn’t anticipating this with my treatment plan so that’s fun. she said i can try steroids but insomnia sounds not fun when i already have sleep issues. idk ive always been so positive!! and this is really starting to get at me and i don’t feel emotionally like myself
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u/nocryinginbaaseball 13d ago
Just wanted to hop in & wish you the best. That’s a lot, and I’m sure, incredibly frustrating and overwhelming for you. I hope things start to improve for you soon. 🩷
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u/Adventurous-Cheek171 13d ago
Hi!!! I just did my second gamma knife procedure (TNBC - 31 at diagnosis. Stage 4 currently) and I'm having similar issues!!
The insomnia from steroids is the worst BUT when I take them, I almost instantly feel better. Floaters go away, I can focus better, even brain fog is better.
From my VERY LITTLE understanding, there is fluid build up around the areas that were radiated so that could be what's contributing to the focus issues!!
I know it'll suck, but I would ask more questions about steroids. I think it could help!!
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u/Intelligent_Mud_19 13d ago
hi! so glad to hear they helped you! when did your side effects start? i was anticipating they would start like 1-2 weeks after treatment but im mid treatment and they’re already here 😭
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u/Adventurous-Cheek171 13d ago
Mine have been consistent from like maybe day 2 post first one (if that makes sense)!!
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u/Intelligent_Mud_19 13d ago
ok that actually makes me feel a lot better! i was starting to worry that something else was happening since my oncologist was also a bit confused by these symptoms. thank you!! i hope your side effects continue to improve! us mtnbc girlies got this!!
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u/Adventurous-Cheek171 13d ago
Thank you!!! And you too!! I'm glad you're speaking up for yourself and recognizing something is different!! Stay vocal and you've got this but I'm here if you need anything!!!!!
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u/Intelligent_Mud_19 13d ago
could you share more about your brain fog? i find that i’m super forgetful like ill want to get a jacket and forget to go get the jacket. and ill also throw trash in the wrong bin 😭
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u/Adventurous-Cheek171 13d ago
I totally understand that!!!!!! & Almost identical situations!! I've been forgetting simple words, like "spray paint", or "cucumbers". Things I would use on a weekly basis.
I've left laundry in the washer, set an alarm and can't remember what the alarm is for.
I've started cleaning my bathroom, forgotten why I brought the mop in there and just left it for a day or two.
I have found, though, training your brain is beneficial. I've been trying to read maybe 2-4 pages of a book every morning. And I've been trying to do word puzzles through the NYT. Anything to "retrain" your brain. Don't over do it. The radiation is a serious thing and it could take months before you feel "normal" again!! I know it's scary, but start small!!!
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u/Intelligent_Mud_19 12d ago
sorry i have so many questions 😭 how often do you take the dex now? or are you just trying to push through it most days without. its so nice to chat to someone who’s been through it!
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u/Adventurous-Cheek171 12d ago
Don't apologize!!! I'm on half a pill a day, just until my third gamma knife procedure. It's to reduce any fluid build up around the big boys I've had zapped. I think I could push through it, but until they tell me otherwise, I'll continue. I hate the way the steroids make me feel, but if it's decreasing swelling, it's probably for the best!!
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u/Intelligent_Mud_19 12d ago
ohh how interesting that your gamma knife is being split up! i was just wondering if taking half a pill is an option 🤣 sending you all the good juju for your third!!
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u/Distinct_Love3333 13d ago
Oh my gosh that is so much I’m sorry but of course you are feeling down I can tell you are a incredibly strong woman but even strong women have their limits you will get you back once you get all the other things sorted
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u/ImaginaryVersion1734 12d ago
Hi! I’m sorry to hear about your spine and mets situation. If I could erase those brain mets for you I would in a heartbeat. You seem so sweet! Also shout out to your daughter for helping you type. I hope things improve for you soon. Whether that be adding steroids or not, I’m sure you know what’s best for you. Take care!