Wait, whaaaat?

I've heard the saying, red sky in morning sailors take warning, but I had no idea that red sky at night meant delight. Cause.....

...I have no tumor!!!! It was scar tissue and inflammation. Hey-oooooooo. Also, we are pushing my MRIs out to every four months.

Although Dr Liau was very busy she helped us go through my pathology (apparently IDH1 mutation does have a better prognosis). She was positive about what I'm doing, and definitely on board with the Accutane, since it works amazingly with the IDH1 mutation. She worked on a clinical trial with Accutane and glioma patients a decade or so ago and it was considered a failure. But in 2008 scientists recognized the IDH1 mutation and when retrospective research was done, they realized that those in the trial with the IDH1 mutation way outlived their peers. I can't wait to start taking it! Liau said lots of those from the original trial are still alive! Yay for looking into my pathology. Yay for having targeted treatment. I am so lucky!!

We're currently waiting for Dr Cloughsey. I can't wait to meet him and talk to him at depth about my genetics/pathology, and what things could work as backup plans in the future if Hermie crawls out of hibernation. (Of course, I'm also really excited to talk more about the Accutane trial results and details.)

Danny and I can not believe the good news, especially since I woke up with my right eye dropping, eek! I hate it when that happens. It makes me feel like my face is melting.

What a relief. I can't even absorb the good news! I'll be pinching myself the rest of the day. Tonight will be a delicious meal with a full bodied red wine, then I'm back to the protocol. Gotta celebrate :) 

Good God I am such a lucky girl!!!! Wow.

Wow.

Double wow.

Phew.

Absolute Accutane

With the final minutes to go in the hawks game (ouch), we are out of here.

I've been feverishly re-reading my packet from nutritional solutions (they don't just give nutritional advice, also they provide off-label drug info, conventional treatment information, and much more), all to organize synergist treatments for whatever they find in my scans. The way I see it, I may have:

A. No tumor

B. Tumor, but still low grade

C. Grade 3

E. Grade 4

There are lots of various options at each stage, and there are different recommendations for each. I'm working on game plans for all possible outcomes. That way I will have a lot of immediate questions, and will have the ball rolling.

One of the things I'm asking (regardless of scan results) is for a prescription for accutane. I was doing research yesterday and my UCLA doctors are working on a clinical trial for low grade gliomas with IDH1 mutations (Liau & Cloughsey) pairing standard of treatment with accutane. Anyway, I can't wait to ask Liau & Cloughsey all about their trial. Apparently, if you have the IDH1 mutation, accutane can really extend your life. That's exciting!

Ok, time to taxi. Don't want to pull a Baldwin.