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Wednesday, May 13, 2020

Achieving Mellow

Well, I just downed my second calm-me-the-fuck-down tab and I’m feeling mostly mellow. I do three, spaced out over the 24 hours before I slide into the magic MRI tube.

Today’s scan is of ma tĂȘte – a follow up on the leviathan liberating slice up in January. How’s the ol’ bean doing and shit? Though the fat fucking meningioma hellbeast has been set free from my brain’s tiny prison, his flock of smaller, less annoying brothers are still up there – probably playing cards, pissing on the walls, sending out for pizza and using wretchedly miserable grammar. Meningiomas – they're kind of the white trash of nervous system tumors.

Why doesn't MGH have castle MRIs?
I guess today’s test will tip the good docs off as to whether I need more brain peeling OR, mebbe, I qualify for this super duper new treatment.

The sponsor, the prime mover and shaker on this project is my neurologist, Scott R. Plotkin, MD, PhD. His collaborators are Takeda , (an R&D pharmaceutical concern) and the Children’s Tumor Foundation whose mission is to drive research, expand knowledge, and advance care for the NF community.
This is a multi-arm phase II platform-basket screening study designed to test multiple experimental therapies simultaneously in patients with neurofibromatosis type 2 (NF2) with associated progressive tumors of vestibular schwannomas (VS), non-vestibular schwannomas (non-VS), meningiomas, and ependymomas.

This Master Study is being conducted as a "basket" study that may allow people with multiple tumor types associated with NF2 to receive new drugs throughout this study. Embedded within the Master Study are individual drug substudies.
I WANT to ride in a submarine MRI! (none at MGH :(

- Investigational Drug Sub-study A: Brigatinib (source)
I’m not gonna pretend I understand all this AND I don’t know that, right this minute, I need to.

Clarke’s Third Law: any sufficiently advanced technology is indistinguishable from magic.

Yes, true. If Doc Plotkin can quell my bod’s seemingly infinite tumor production with his new, non-cut-me-up treatments, I’ll be happy as fuck. And yeah, it’ll seem hellaciously magical.


Clarke’s other two laws?
  1. When a distinguished but elderly scientist states that something is possible, he is almost certainly right. When he states that something is impossible, he is very probably wrong.
  2. The only way of discovering the limits of the possible is to venture a little way past them into the impossible.
He also posited that:
Two possibilities exist: either we are alone in the Universe or we are not. Both are equally terrifying.

Yup.

I still need a visual, a task to ponder while tubifying.
  • I could think about aliens – what might they look like. 
  • I’ve got two paintings on the easels which need…something…something…WHAT! 
  • OR I could imagine that I’m floating in the warm, silica suffused waters at our Icelandic nirvana. 
Yup, that may well be the ticket!

2 comments:

  1. Good luck, Donna! Fingers crossed you are eligible for the new treatment ❤️

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    1. :-) MRI went smoothly. Being in MGH, at least in the neuro buildings, during the pandemic is pretty odd – relatively empty and appointments are all running on time, if not early. I kind of like this! My appointment with Plotkin will be online versus in person. THAT should be interesting :-0

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