Brain Mets Sisters

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<

I’m sorry keetmom, I know it must be scary. Please let us know what the plan is moving forward.

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.

Anyone on Keppra they started Mri on it, not starting me back on dex daily yet

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!

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

https://onlinelibrary.wiley.com/doi/pdf/10.1111/bpa.12162

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.

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?

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!

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.

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.

—-

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.

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.

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.

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

stil her