Hello, AML

Posted 24 May 2018 · revision history

I was diagnosed with leukemia a few days ago. Things have moved quickly since, and I’m writing this post from my hospital bed here in Vienna. I feel perfectly well right now, but it’s important to begin treatment as soon as possible, so here I am.

As I imagine is true for many people, I was aware of leukemia but didn’t know much about it. I knew it as a blood disorder, but didn’t fully understand it as a form of cancer. Wikipedia was helpful filling in the gaps; I recommend reading the main article on leukemia and in particular watching this video.

My specific diagnosis is acute myeloid leukemia (AML) subtype M5a, otherwise known as acute monocytic leukemia. It’s treatable with chemotherapy and bone marrow transplants, but long-term survival rates aren’t great. As best I can tell right now, I have something like a 40–45% chance of living beyond the next five years. Many live longer, some indefinitely so. My odds will become clearer as more data comes in over the coming weeks.

One complicating factor is that mine is a so-called secondary or treatment-related leukemia, meaning it was likely caused by chemotherapy treatments I had for testicular cancer a few years back. That previous cancer was completely cured, but (ironically) chemotherapy is itself carcinogenic and can lead to further cancers down the road. This detail is important because secondary AML tends to be harder to cure.

Genetics can also play a role in predicting how I will respond to treatment. As I write this paragraph, I just finished a biopsy procedure to extract a bit of bone marrow from my hip. Over the next few days, that marrow will undergo tests to determine whether I have certain genetic indicators that put me in a good, bad or normal risk category.

In any case, I’ll begin chemotherapy treatments soon, and will remain here in the hospital for at least the next few weeks throughout the first so-called induction cycle. Each chemotherapy cycle is a month long, beginning with a week of active administration of the drugs, followed by a few passive weeks to let them take full effect. The induction cycle often results in a complete remission, but additional so-called consolidation cycles are required to minimize chances of recurrence. If all goes well, I’ll go through five or six cycles in total, meaning it’ll be at least five or six months before returning to something like a normal life.

I’m fortunate to have been diagnosed relatively early in the progression of the disease. Many patients don’t know they have leukemia at all until it’s so advanced that they come down with a persistent infection or other serious condition. This often leads to delayed treatment and reduced chances of effectiveness.

In my case, I had strange and sometimes severe pains throughout my body over the last two months that eventually got so bad I ended up in the hospital. It took a ten-day stay and many tests to determine that these pains were a symptom of leukemia, but ultimately I was diagnosed a bit earlier than most, while my bone marrow is still functioning to a certain degree. This means I can begin treatment right away and that chances of effectiveness are that much better.

I’m also fortunate to be able to work from anywhere, under almost any conditions. I’ll continue my efforts on Bisq, though perhaps in a more focused way now. This situation does however mean that I won’t be able to travel and give talks about it for a while. I’ve already had to cancel one such speaking slot at HCPP18, which I was looking forward to after a great time there last year. Bummer!

So that’s the news and those are the facts so far. I have a lot of support from my family and friends in the US and Vienna, the hospital staff is nice, and I’m in good hands with my doctor. My spirits are high and I’m maintaining a realistic but positive outlook about all this. Thanks to all who’ve wished me well and offered to help. I’ll keep everybody posted.

UPDATE: Literally two minutes after I published this post, my doctor walked into my room and told me the initial results from my biopsy are in, and that to his surprise no leukemic cells could be found in my bone marrow. This could mean a number of things including a rare spontaneous remission, but it’s too early to say anything for certain. The full results of the biopsy will be available in around ten days, and until then it doesn’t make sense to start chemotherapy. I’m being discharged from the hospital now, and will stay at home while waiting to see what happens next. What a rollercoaster ride.

UPDATE 2018-07-14: As it turned out, the results above were a fluke. Further tests came in confirming the AML diagnosis, and I began chemotherapy shortly thereafter. I’ve now completed the first cycle, and wrote a post about it here.