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Old 01-05-2016, 10:52 AM   #22
agness
Senior Member
 
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: My leptomeningeal journey

--- part 12 ---

After my brain surgery from everything I could gather from my team and my research I learned that there was a high risk of my brain mets coming back and that there was a dearth of information about cerebellar mets. The more I looked and my father looked the more it was impressed on us that they just don't know. The more I spoke to professionals the more I realized that they don't know either and I became embarrassed for them, honestly, to be practicing in this prestigious field of neuroscience and yet at the same time completely hand-wringing about the blood brain barrier.

My recovery from surgery and brain SRS was amazing actually. They said my balance might be off, that I might need to walk with a cane. Instead I bounced back with great energy and was practicing qigong and ballet at home. We were amazed at how well I was doing.

I knew I should speak to more specialists and I tracked down HER2 brain mets researchers at UCLA and UCSF. I downloaded and compiled all my records and shared them with my dad who noticed that the 9/3 treatment planning brain MRI for my SRS said this:

"Post resection of the right cerebellar metastasis, new nodular/mass-like contrast enhancement within the resection cavity.
Given the enhancement characteristics of the original tumor and the
morphology of this enhancement, local recurrence of the metastasis is
suspected"

I asked my team about it and they said, yes we always have the radiologist review the imaging but we often disagree. It was a brain tumor oncology team that was telling me this, the radiologist didn't know what they were seeing obviously. Right?

So I sent my records off and a few weeks after SRS I went and spoke to a specialist who said "sure, I would let you get on systemic therapy for HER2 brain mets. It isn't standard of care but sure, I would give you lap/cap (Tykerb/Xeloda) or Kadcyla (TDM-1)" She said I would be on them for the rest of my life and both treatment regimes come with toxicity side effects. She referenced the Landscape trial from France (2013) that was the closest to my case. (get a full copy of the report if you are interested, there's a lot more than just the abstract). I asked about my PCR to neoadjuvant treatment and she said it means nothing, you are metastatic and, basically that's my lot. I had a hunch that it had just never been studied and so it didn't mean nothing, it meant they knew nothing. It was discouraging but eye-opening in many ways.

Okay then, so I feel better than ever, I bounced back, I'm taking care of my young boys, my neuro-onc team doesn't want to do anything, the consultant says I can get on treatment for the rest of my life. This doesn't sound like a win-win or anything easy for someone to navigate under the best of circumstances.

My neuro-onc does a post-treatment MRI sooner after SRS than is standard practice, in order to see if it worked. Even the doc at UCLA said "that's so soon". So six weeks after I finished SRS I had another brain MRI. This time the results were even more weird and my neuro-onc said, it's either atypical leptomeningeal spread or else its atypical swelling. She said I had atypical swelling at the surgical site after my craniotomy so maybe it was me. She asked about symptoms and I said that I had pain on my facial nerves, roving pains and numbness. That's not what we are looking for she told me. It wasn't what she was looking for but it wasn't normal for me, it was similar to pains I had from my original brain tumor and they were increasing -- but it wasn't brain tumor?

My head was reeling -- I either have a dire diagnosis or its nothing. I cried. They told me we have to rescan in a month and see what happens. How fast does HER2 grow in the CNS I wondered. If it was just swelling they gave me no instructions for things I could do to help my brain heal (I have a list that I will post, of course I do, and I'm happy to share). So I again found myself in the position of waiting for the other shoe to drop.

Last edited by agness; 01-05-2016 at 10:54 AM.. Reason: removing sig
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