Brain Mets Sisters
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kkrenz - I am so glad the the first procedure is behind you and you are doing well. Even though brain mets are really scary and dangerous, it seems they have come a long way in treating them. I know you are at Mayo in Rochester. I always feel calm there, despite a terrible medical phobia.
>Z<
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i just had a grand mal seuzure, were on some place for night, heading hone to go to our ER. Guess no more driving for me
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I’m sorry keetmom, I know it must be scary. Please let us know what the plan is moving forward.
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keetmom - that is terribly scary. Please keep us updated. Thinking of you.
Z
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Mri was stable so that is good. Put me on anti seizure drug and gave me a big dose of steroids, felt better after the steroids, so I'm guessing I'm back on them daily.
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Keetmom - Steroids have their place, but boy do I hate them. I am thinking and praying for you.
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Anyone on Keppra they started Mri on it, not starting me back on dex daily yet
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Keet, I'm on a very low dose of steroids...less than 2 mgs/day, and I'm taking CBD tincture to keep seizures at bay.
My left hand keeps doing weird, uncontrollable things, and I'm having stomach issues now too. It's probably related to the Gemzar killing off healthy stomach lining tissue...it's not nausea per se, it feels more like dyspepsia. Tums and Pepcid are knocking it back a little, but as we all know, the longer you're on chemo, the worse the SEs become....sigh.
Seizures are scary. Good luck to you.
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I have been on 3,000MG of Keppra (as well as 2 other anti-seizure drugs) daily for over 2 years now. I have no side effects from any of them, other then being seizure free for over a year and a half and counting!
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I'm on a 1000mg daily of Keppra and have been since my seizure in 2015. No side effects at all from it. I've been seizure free since the initial one in 2015, but neurologist is hesitant to take me off Keppra since I'm not experiencing any SEs and he likes the "extra protection" from a seizure if another brain met pops up.
Hope you are feeling better soon!
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I mentioned to one of docs about my theory that we waited to long after my craniotomy to do SRS. She told me of two other patients treated with SRS in under 4 weeks who were dealing with LM spread. It doesn’t mean that my cancer in my cerebellum shouldn’t haved been treated sooner - it just means that there are radio-resistant lines.
Somebody asked about scar tissue and I’ve been researching it as well”
“Scars tissue should be denser than other tissue in the brain as it is solid connective tissue.“
I think they are still watching the scans. This is scar tissue and not necrosis.
More stuff:
"Accumulating evidence suggests that the cerebellum is one of the main CNS targets of autoimmunity, as demonstrated by the high prevalence of paraneoplastic cerebellar degeneration (PCD) amongst paraneoplastic neurological syndromes"Guidelines for treatment of immune-mediated cerebellar ataxias
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4641375/
" The central nervous system (CNS) is special in that fibrogenic cells are restricted to vascular and meningeal niches. However, disruption of the blood–brain barrier and inflammation can unleash stromal cells and trigger scar formation."The Fibrotic Scar in Neurological Disorders
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I’ve been on 1000mg 2x/day of Keppra for the past 2.5 years. No side effects. I have localized seizures but I’m in a long seizure-free stretch...I’m so scared that I just jinxed myself by typing that out...
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Just got back from chemo, calling scans stable. Only they mentioned one of the nets nay be leptomeningeal, we know that 3months, I'm on carboplatin which crosses brain barrier, any thing else y9u can tell me about it.
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I had one that was possibly a lepto met on my March MRI. They’ll likely confirm via spinal tap. It was scary but didn’t hurt and fortunately negative. Good luck 🙂
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Hi guys I hope you have the best day possible today! I received news on my recurred brain met. Brain met / scar tissue / necrosis will be removed on 2nd July. Another tumor conference will decide next steps. Am still ned below the neck. Glad H&P is working and hope for a good long run on it.
Agness - thanks for diving into this and providing info. I hope for either one of the 2 I just don‘t want them to be cancerous but will expect it. I am so happy to see the car-t immuno trial seems to work for you and hope for it to be your magic potion!
I had symptoms starting 5 months ago like seeing a grey transparent circle with a light ring around it when blinking, brain was showing clear. 3 months later circles were more obvious, eye check negative. Brain has been scanned 4 mths + 1 week after last check and came up with what could be met, scar, necrosis 13x19 mm in the tumor bed bottom and gained 25mm in depth below tumor bed which lies in one of the radiation fields.
On 8mg dexa in the morning for now to prevent swelling.
GYN mentioned it could have been invisible all the time. Ew???That’s a tricky one.
After my first surgery i was released from hospital after 9 days.
How long took it until you were released? What were your mets / how many of you dealt with scar or necrosis? and which were - if - symptoms?
Kkrenz - how do you feel and cope with WBR?
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Clementine - I'm feeling okay, thanks for asking. Tired and strangely anxious....like twitchy and cannot sit still (like I would be if I was on steroids), except I'm not on steroids. I have 4 more treatments left and then we play the wait and see game. I also develop a fever (low grade) immediately following rad, lasts about 6 hours. Is that normal?
Z - please let us know how your appointment goes. I'm praying for good news for you! I agree, Mayo is calming to the nerves!
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Kkrenz - I only know fever can be a SE after radiation but can‘t say if this counts for brain rad aswell. I hope others can provide experiences of SE.
It‘s good you’re feeling okay and I hope you find distraction and don‘t have SE other than mild temperature and being ichy.
Z- good luck for you!
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just lost my post. Just found out today that my cancer has moved into the brain and into the liver. I have one very small spot on the brain, and one small spot on the liver. I’ll be doing cyber knife, and moving on to weekly Abraxane. I’m going to go back and read through some of these posts. I am kind of reeling!
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Oh Gracie, crap! However, just the one spot treated with cyber knife sounds like a good plan. We know it’s scary but it does get better or at least manageable.
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Thanks Mae. I was blown away but am getting better. Hopefully the cyber knife will get it
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after brain surgery (twice now) I was released to my family by two days later. At the time .I was like “what?!” I think because I had family around they wanted me out of there.
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My older son was in 1st grade when I was first diagnosed with BC — yesterday he graduated from 5th grade! I’ve had brain mets diagnosed since his summer after nd grade.
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So somebody tell me about cyber knife for the brain? Side effects? Lasting side effects? What do they do? A mask..a halo(scares the heck outta me!!!
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Gracie, I’ve only had Gamma, not cyber knife but I recommend watching the video Brain Metastasis A Documentary posted on the previous page (#205). I think you’ll be glad you did and feel much better about this going in.
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I did, I'm glad that was posted. Great film! The cyber knife at Wichita evidently isn't novali s certified. I can't find it on their map.
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I checked and MD Anderson isn’t on the map either. It appears the Novalis is a brand but I’m sure many hospitals have good, comparable methods and treatments. I’m glad you watched it, I found the info presented had a hopeful and calming effect on me. We need that, brain stuff is scary.
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Gracie - I am in Minneapolis as I write, headed to Mayo for a consultation with neurosurgeon tomorrow. We will determine the treatment for my 2cm lesion of unknown malignancy (too deep to biopsy). The procedure will be the next week most likely. Cyberknife involves a mask, Gamma knife is a frame screwed to the head. I've the mask to treat a sternum met, it was hard. I'll be pushing for that because i know how it goes.
I wasn't able to complete cyberknife to my sternum on the first attempt. However, they gave me Adivan and told me to come back in two hours and I completed the procedure. I heard them wispering at the end "Is she asleep". No, I wasn't but I was fine.
The issue was that I have a persistent post nasal drip that causes me to cough when I am lying down. Immobilized by the mask, the post-nasal drip causes me to gag. I can't breath and I freak out. After the first attempt, I ran to the pharmacy for nasal decongestant spray and Benadril. That got rid of the drip which got rid of the gagging that was actually causing the panic.
I learned my lesson and I pack back decongestant prior to any procedure where I have to lie on my back with my head still.
Other than that, the sternum rads was a piece of cake. I am headed to Mayo totally calm about this procedure because I know that the experience I had with the sternum rad is preventable and manageable and otherwise the procedure was nothin much. Try lying down bracing your head or 10-15 minutes. If breathing or other issues come up work on a strategy to deal with it.
Glad they found it, get it treated. With you on this unfortunate path ... how are you doing now?
>Z<
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Great advice Z! Thanks for the idea of laying down to see what happens!
I’m doing ok, except for some severe vertigo. The lesion is 2.5 x 1.2, so not very big but not tiny either and it has some liquid lying beneath it. That freaks me out more than anything!
Mae, that does make me feel better! Didn’t think to check a big place to see if they were on the map! Was thinking gosh I hope these people know what they’re doing
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hello zarvonka stood her
Paula.
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stil her
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Hi there Paula!
How are things? Last I recall you were feeling tired and dizzy after WBR. Hopefully, it’s improving 🙂
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