Showing Feelings of an Almost Human Nature

Sat Mar 2, 2024
Blogging tunes: Phish Radio (SiriusXM)

Good morning, Worm your Honor.  This has been one helluva week, gang... truly one of the most intense and emotionally/mentally draining of my life.  The good news is, as of yesterday afternoon at about 5:30p, we have a plan for the first phase of treatment and a trajectory for the plan after that. We'll start there and then I'll fill y'all in on (the parts I can share re) the insanity of the week if you care to read on.

Summary: we are going to give the Curative Approach one more fucking shot. While a third transplant will be incredibly harsh on my body (and has no guarantees of working, let alone not killing me in the process) it's the only chance of giving me a reasonably long life. I'm not willing to throw in the towel just yet.

First phase of treatment: after an exhaustive search of treatment options, we've decided to do a clinical trial at UCLA involving a combination of a "menin inhibitor" (Zifto) combined with an an oral chemo regimen (Aza/Ven) for the initial treatment.  The goal is to achieve a full MRD remission which is the first step in preparing me for 3rd transplant (which would take place at UCSF under Dr. Damon's care) with a different donor.  Don't worry, Martin, you're still my #1 BB. 💚

Everyone I've talked to -- LLS folks, oncologists from 4 world-class institutions, people at an oncology R&D firm, and more -- agree that this combo regimen is the best course for me, considering my history, KMT2A rearrangement and 6-11 chromosome translocation. 

So what does this look like?  Well, I need to go down to UCLA this coming Wednesday for another bone marrow biopsy, other screening tests, and to sign all the paperwork.  Just cleared my work calendar and booked my same day ticket!  Then, as we hoped, treatment will start on Monday 3/18 or Tuesday 3/19. This will not only allow me to play the Ivy Room Chum gig [details | tickets] but, if all goes well, might also allow me to go to the second weekend of JazzFest with Dougie on Wednesday May 1st.

Here's a snippet of email exchange with my UCLA doc.  Top part is me, bottom is her response.

So why was this week so crazy?  Well, for one, making the decision to go with a clinical trial that involves traveling for treatment certainly isn't trivial: it's not just about the first phase. We needed to make the 3rd BMT decision too. Why? Because if we had chosen to just do the "maintenance" route for Phase 2, that would entail frequent trips to UCLA... perhaps forever... or at least until the maintenance regimen was FDA approved and available at UCSF. I didn't think we'd have to make this decision so soon.

Then, there's the trial itself. There were about 4 trials under consideration. They are all pretty similar, though there are different menin inhibitors involved and they are all in different geographical locations. For the most part, I had to navigate (and evaluate) all of this myself. I mean, that's not entirely true. I had major assistance from LLS's clinical trial nurse navigator program.

Let me just take a moment to recognize Elise Curry from LLS. Once we made the decision to explore trials, the possibilities expanded majorly. There are literally dozens of trials out there. Elise prepared a 7-page report of trials specifically tailored to my AML specifics, sorted by distance, and using a brilliant highlight-color system to separate the signal from the noise. Not sure how I would have navigated this without her.

I also wound up talking to (and texting with) the Principle Investigators from 3 different trials multiple times and then cross-referencing that info with Elise (and others) from LLS -- Hi Lila and Weston!

And to honor these wonderful people, I made my triple mocha in (one of) my (many) LLS mug(s) this morning. :)

Then, just as we thought we had reached a decision, we got notified that the trial we were looking at had gotten put on hold. Ummm.. what? Yeah. Not gonna go in details here but let's just say the timing of some of my conversations allowed me to be accepted into the screening phase of the trial just before the pause. It was way more complicated and certainly more stressful than how I just described but I can't really say any more than that... all's well that ends well. Whew.

I'm not going to name all the doctors I talked to here. Suffice to say they were amazingly helpful and I have sent messages of extreme gratitude to all of them. If you're reading this, you know who you are.

I'm sure I would have been in great hands with all of them. If anyone reading this wants any info about treatment options and oncology institutions, just reach out to me at <jaygee> at [gmail] dot {com} and I'll be happy to share.

So how did we finalize the decision? I had a great tele-health meeting with Dr. Chai-Ho of UCLA yesterday afternoon. This meeting, UCLA's connection with UCSF, and a bunch of logistical factors led to UCLA winning out over the other trials I was considering. I'm looking forward to meeting and working with the team down there.

So after this tele-health call, everything was all set, right? Not so fast. Towards the end of the call, we got notified that there might be an issue with my insurance covering one of the chemo meds involved in the trial. My heart sank. Would we really have to deal with potentially paying tens (or hundreds!) of thousands of dollars out of pocket for meds related to this trial. My head exploded. Was I going to have to dip into investments/savings? Call Uncle Marc? Or worse, settle for the original palliative treatment we had talked about. Well, 4 hours later, we got the good news that the insurance situation was actually ok. Whew again.

While navigating all of this, I've been working about half-time. Thanks Gal, Diego, and most of all Mike for your support on the work front.  I also, have to take daily naps. My counts continue to fall, and as they do, my fatigue increases.

Here's a hybrid chart of some of the CBC numbers from the last month or so. The lab results in MyChart have come a long way. Blue lines are me.  Green area is "normal".  My counts? Not even close, bud.

So that's the story.  Looking forward to seeing some of you at Ivy Room on Fri 3/15.

iwkiaaaa