First came the light, then came the sound

Day +XX - Sunday Feb 18, 2024
Blogging Tunes: Phish Radio (Siruis XM) - Berkeley 4/17/23

No, I didn't forget to fill in "the + day." In almost all previous blog posts, I start with "Day +XX" where XX is the number of days since transplant. For over 10 years of blogging, this number represented the number of days since the original transplant. Then, starting late December 2021, the days "reset" and blog posts for the past couple years saw XX climb again from +1 to +745.

But now there are no days to count. Relapse #2 means we're starting over. Starting. Over.

What does that even mean? Well that's the $1mil question and it's what's on everyone's mind. That's 4 apostrophes in the last 6 words. Hmmmmm.... 🤔

Here's what we know. While the path was clear the first two times: aggressive chemo followed by stem-cell marrow transplant; AML 3.0 is a different animal. A third stem-cell marrow transplant is rarely done. Why? It just doesn't usually work -- the efficacy goes down with each successive transplant -- the cumulative chemo is really tough on the patient, and the risk of severe GVHD complications with a new donor is high. Of course, as Lisa tells me, if anyone can handle a 3rd transplant, it's me. I'm young (relatively speaking), I'm strong, and I'm tough as nails. Still, it's not (even close to) a slam dunk. 

So, if not transplant then what? Well at the highest level, the big question is: are there any other curative options or are we strictly going the palliative route? What does this question even mean? Here's a simple answer from ChatGPT:

Palliative treatment and curative treatment for cancer are two distinct approaches aimed at managing the disease and its effects on patients, but they have different goals and focuses:

Curative Treatment:

• Curative treatment aims to eradicate cancer cells from the body or achieve long-term remission, with the ultimate goal of curing the disease.
• Common curative treatments for cancer include surgery, chemotherapy, radiation therapy, targeted therapy, immunotherapy, or a combination of these modalities.
• The focus of curative treatment is to eliminate cancerous cells and prevent their recurrence, potentially leading to a complete recovery or a significantly prolonged life expectancy.

Palliative Treatment:

• Palliative treatment focuses on improving the quality of life for patients with cancer, especially those with advanced stages or those who may not respond well to curative treatments.
• Palliative care aims to alleviate symptoms, manage pain, control side effects of treatment, and provide emotional and spiritual support to patients and their families.
• It does not aim to cure the underlying disease but rather to enhance comfort and well-being, addressing physical, emotional, social, and spiritual needs.
• Palliative care can be provided alongside curative treatments, and it's not limited to end-of-life care. It can start early in the disease course and continue throughout the treatment journey.

In summary, while curative treatment seeks to eliminate cancer and achieve a cure, palliative treatment focuses on improving the quality of life for patients by managing symptoms and addressing their holistic needs, regardless of the disease's prognosis. Often, both curative and palliative approaches can be integrated into a patient's care plan, depending on the stage and nature of the cancer.

I've highlighted some text in purple because it's relevant to the decisions we need to make over the coming weeks and months.

The current plan of record is that, right after the Chum Ivy Room gig on March 15th, we're going to start on a chemo regimen (Venetoclax + Decitibine) which is a relatively new combo of oral out-patient meds. Yup, just some pills. No hospital, no PICC line, none of that shit. And that's great. This regimen has been pretty effective in achieving remission for two-time AML relapse patients like me.

You might be thinking: is it really ok to wait 4 weeks to start?  I think ideally we'd start in 2 or 3 weeks, but based on the current decline trajectory of my counts, there's no real risk. And if we started treatment even a week earlier, Ivy Room gig would be in major jeopardy. All this said, we have to check my counts each week. If any of the main blood counts (like Hemoglobin, White Blood Cells, or Platelets) starts to drop big, all bets are off.

I mean, these counts are all low, but they're not dangerously low. Platelet are a concern. My platelets have always been low... even when I was "cured" the platelets were in the 120-130 range. Low end of "normal" is 140.

They are definitely getting low but they would have to dip down to like 15 before we have to take some drastic action. Let's keep 'em above 20!

Anyway... back to the plan.  So we're talking about the oral V+D to get to the remission, right? Well, just achieving the remission doesn't help long term (or even medium-term.) AML is relentless. It always comes back. So it's what you do after you achieve the remission that matters. In 2011 and 2021 it was a stem-cell marrow transplant which was a curative approach. 

So let's assume the oral V+D works and we achieve a remission? Then what? We don't know. It could be palliative options like continuing with a "maintenance" version of the V+D. There are people that live for years on that. It kinda sucks though: you're basically on and off mild chemo forever, and there are complications, likely neutropenia, transfusions, overall low energy, etc. This is current plan of record. Not thrilled about it, but it does allow me to be fully present with my family and kids here in San Rafael.

So what are the curative options you ask? That's what we're exploring. 3rd transplant is one option but, as mentioned above, it's not a great one. Others would be possible clinical trials and we're looking around to see what might be a fit. But my AML markers and mutations aren't good... and right now we don't know of any targeted therapy (e.g. immunotherapy, CAR-T, etc.)  that's a fit but we're looking.

Sometime next week (or the week after) I'm going to meet with some docs at Stanford for a second opinion. Dr. Damon and team are 100% supportive of my getting 2nd and 3rd opinions, and now is the time, since starting the V+D could potentially preclude my eligibility for some clinical trials. So we need to navigate this carefully.

So it's possible that we'll discover some trial that will make us rethink everything. But I'm telling you... it will have to be some kind of perfect trial, because there's just no way I'm relocating to God-knows-where for some crazy trial that might not work right now. I want to be here and present with my family.

So that's the health update.

There's been all kinds of other great stuff going on like Heather's and my 25th monkaversary -- nothing over the top... we just went out for a great dinner at Laos Kitchen, this new place in San Rafael; I love you boo! -- Floyd's high-school baseball team's first game (and win!) of the season (can you believe this kid will be 16 tomorrow?) followed by an epic crab feed, an awesome Chum gig in San Jose, Tripp's awesome Sober Bowl party (where Travis and I won over $1000 -- hooray KC5 and SF2 squares!), and much more.  Not gonna post a bunch of pics though... just a couple of the birthday boy.  

  

Speaking of birthday boy, I'm sure by now you know about his Student Visionary LLS campaign. If somehow you got all the way through this post and don't know about it, please check it out.  :) 

iwkiaaaa.