Like Some Recursive Virus
TL:DR; AML is back. The second transplant only bought us 25 months (not the 10 years we were hoping for.) This is a long multi-day update summarizing the events of the past 96(ish) hours which I'm posting as a single entry. Grab a drink and sit down.
Wed Jan 31, 2024
I can't believe we're here. I just can't.
When transplant #2 seemed to work, I said -- to myself, to my colleagues on the LLS board, and in a video I made for some colleagues Kura Oncology -- that if this transplant just buys me another 10 years, and the treatments haven't changed much, I probably wouldn't go through additional treatment. I mean, transplant #2 was December 2021. So ten years would have been 2031. Orion would be a junior in college. The child-raising would basically be done. I'd have lived a wonderful, exciting, fulfilling life. 61 isn't the ideal time to go, but it's better than 53, right?
But it wasn't 10 years. It was 25 fucking months. And this January was probably the kindest I've been to my body during that stretch. I cut out the alcohol, was intentional about what I ate, worked out just about every day and lost 9 pounds in January. yeP! From 179 to 170. Here's the proof
Yet this is where we probably are. Relapse #2. From thinking I was cured mid/ldate-last decade, to the shock of an unheard-of 10.5-year relapse in 2021, to an incredibly quick recovery from the transplant #2 (thanks Martin and Dr. Damon!) to a routine visit gone horribly awry.
On Monday 1/29 I went to UCSF for the first time in 5 months. The expectation? Draw blood, get normal results, chit-chat with Lisa, go home. Nope, not this time. CBC all fucked up. i.e. this:
So Tuesday I go back for a BmBx. Go-ahead and search for a YouTube of a bone marrow biopsy. Go ahead. Watch it. I've had fucking 10 of them. Probably more. And this one? They couldn't get everything they needed from my left hip, so... sure, drill the right hip too. Why not? So 2 BmBx in one morning. Wheeeee! 🎉🩸 Where's the dang poop emoji on this thing?
And then of course we wait... we wait a couple days for the inevitable news that my AML has returned for a third time... where this time a bone marrow transplant is not really a viable option.
So now what? I don't fucking know. And right now... at this very moment... I'm too angry to even think straight. At least I'll be able to do the Chum gig at Art Boutiki in San Jose on Feb 10. Haven't seen us in awhile? Might wanna come out! More locally to SF and Marin there’s also Mar 15 Ivy Room gig -- almost 10 years to the day since my first Chum gig. Pretty sure I’ll be able to do that too. But after that? Who knows. So get your tickets!
Oh, and JazzFest in May with Doodles? That's in jeopardy. Late summer Zion trip I just booked to hike The Narrows with the boys in August? Fuck, I might not be hiking a simple flat 2-mile China Camp loop by then.
Thu Feb 1, 2024
So originally we were told we'd get prelim results from the BmBx by Wednesday afternoon. Well, it's Thursday 12:14p and still nothing. Is that good news or bad news? No clue. I mean, deep down, I'm pretty sure I know what the news is going to be... it's just the excruciating waiting. Cue the Tom Petty.
Lisa just texted me that Lloyd (Dr. Damon) emailed pathology so maybe that will expedite things.
In other news, Heather made a reservation for the family at one of our favorite Marin Restaurants for tomorrow night -- the Buckeye Roadhouse.
So is this where we're going to break the news to the kids? Also, am I going to break my dry 2024? Can I really go to the Buckeye and *not* get a glass of red wine? Does it really matter if I drink for one night since I'll probably be going alcohol-free for who-knows-how-long while we figure out WTF this treatment is going to be?
Fri Feb 2, 2024
Yesterday evening around 6:00p, Lloyd called me to tell me there still wasn't any news to report. Apparently half of the pathologists are out with COVID so things are taking longer than expected. He also said that the super-quick read didn't show leukemia so they have to do the next level of analysis. This makes sense since, if it is AML, it's likely going to be just barely visible given my counts aren’t that low. Remember, I didn't go in to UCSF because I was feeling shitty... I went in for a normally scheduled appointment. I felt fine that day. I still feel fine. "You don't look sick, Mr. Stanwyk."
So... what are the options if it is, in fact, AML? Here's what ChatGPT says:
What are the treatment options for a second AML relapse after two reasonably successful stem-cell marrow transplants from the same donor?
The treatment options for a second relapse of acute myeloid leukemia (AML) after two stem-cell marrow transplants from the same donor can be challenging and often depend on several factors including the patient's overall health, age, previous treatments, and the specific characteristics of the leukemia cells.
Here are some treatment options that might be considered:
1. Chemotherapy: Depending on the patient's health status and the specific characteristics of the leukemia, chemotherapy drugs may be used to try to induce remission again. This may involve using different combinations of chemotherapy drugs than those previously used.
2. Targeted Therapy: Targeted therapy drugs, such as tyrosine kinase inhibitors or other molecularly targeted agents, may be considered if the leukemia cells have specific mutations or markers that make them susceptible to these treatments.
3. Immunotherapy: Immunotherapy drugs, such as checkpoint inhibitors or monoclonal antibodies, may be used to help the immune system recognize and attack the leukemia cells. This could include therapies like blinatumomab or other forms of immune cell therapy.
4. Clinical Trials: Participation in clinical trials of new treatments or experimental therapies may be an option, especially if standard treatments have been unsuccessful or if there are no other standard treatment options available.
5. Second Transplantation: In some cases, a second stem cell transplant (allogeneic transplantation) from the same or a different donor may be considered, particularly if the patient has responded well to transplant therapy in the past and if a suitable donor is available.
6. Supportive Care: Palliative care and supportive treatments to manage symptoms and improve quality of life may also be an important aspect of care, especially if the leukemia is not responding to treatment or if the patient's overall health is compromised.
It's important for patients and their healthcare providers to discuss all available treatment options, taking into consideration the potential benefits, risks, and limitations of each approach. The decision-making process should be individualized based on the specific circumstances of the patient and their disease. Additionally, seeking consultation with a hematologist-oncologist or a leukemia specialist can help in navigating treatment decisions and accessing specialized care.
I guess ChatGPT was a little confused as #5 doesn't really make sense — I’ve already had two transplants.
So I then asked:
Is a third stem-cell marrow transplant recommended for a 53 year-old AML patient who has relapsed twice over the course of 13 years?
Decisions about whether a third stem-cell marrow transplant is recommended for a patient with relapsed acute myeloid leukemia (AML) can be complex and depend on various factors including the patient's overall health, previous treatments, response to therapy, presence of any comorbidities, and the availability of suitable donors.
A third stem-cell transplant may be considered in certain cases, especially if the patient has demonstrated good responses to previous transplants and if there are no significant contraindications. However, each case is unique, and the decision should be made in consultation with a hematologist-oncologist or a transplant specialist who can assess the specific circumstances of the patient and discuss the potential risks and benefits.
Other treatment options, including alternative therapies or clinical trials, may also be considered depending on the patient's situation. It's crucial for the patient to have open and thorough discussions with their healthcare team to explore all available options and make an informed decision about the best course of action for their individual situation.
Well, shortly after this oh-so-informative convo with ChatGPT, we got the expected news from Dr. Damon. It is, in fact, AML relapse #2. I had always hoped transplant #2 would buy me another 10 years. Looks like it only bought me 2. Don't be upset, Martin. Your stem cells bought me 13 amazing years!
Dr. Damon and I talked briefly about treatment options and timing. Not gonna go into details here other than to say, the immediate next step is probably just gonna be oral chemo meds (likely venetoclax plus decitabine.) We're going to talk to him in much more detail next week or the week after. Curious about the efficacy of these drugs? Here's another convo I had with ChatGPT. Not gonna paste it here. Click if you want.
Time to get ready for a big woo family steak dinner. First time out as a family in a long time. The kids don't know about the relapse yet. We're going to tell them tomorrow.
Steak makes everything better!
Sat Feb 3, 2024
So today's the big day. We're going to have to find a way to tell the kids that I've relapsed and that this time, there's really not a path to a “possibly cure," -- more that there's a path to achieve remission, manage the remission via continued oral chemo, and hopefully “prolong quality life” for a significant period of time. That's a tough message to communicate let alone process. We'll see how it goes.
And no, this isn't some crazy-ass publicity stunt to drive for fundraising toward Floyd's Student Visionary of the Year fundraising effort, though, if his team doesn't win now, y'all kinda suck. :) Please donate here.
Sun Feb 4, 2024
OK. Well, we told the kids and most of our local immediate friend circle, so now it’s time to post. Kids are more or less fine -- well, as fine as they can be. This has been their life. Their dad is an AML patient/survivor. It’s just their normal.
Now I need to hook up all the inline images and links for this post as I’ve been authoring in a separate editor. In addition to what’s posted above, here are a couple pics I took from the Lucas Valley Loop hike on Jan 28 (as noted in the Jan spreadsheet above.) Wild that I did that with the low blood counts!