(Warning: This blog post is non-technical but purely personal. In my leukemia diary, I write openly about my current health issues. This blog might be triggering for people who struggle with, or lost dear ones to, cancer and other similar diseases.)

It’s now almost three weeks since my last update. I finished the seven days of a daily trip to Amsterdam for the azacitidine shot, then continued to take the daily venetoclax pill, as instructed. Plus of course all my various other pills, that I probably never even mentioned here. They have become a kind of routine by now. And once a week a drive to the hospital so they could monitor my blood values.

And then, last Monday, I went in for the next bone marrow puncture. After that, we had to wait for the lab to finish their tests, after which the hematologist would call me. That was Tuesday afternoon.

Could have been worse

The amount of blast cells in my bone marrow has gone down. From 14% at the previous measurement, before we started the AZA-VEN treatment, to now 10%. That is good news. It means that the AZA-VEN not only stopped the cancer from growing, but has even managed to fight it. Somewhat.

But 10% is still too high for a stem cell transplantation. So we need to continue with AZA-VEN for now, and hope that it continues to fight down the cancer, and that after one, two, or three more rounds, the blast cells will be down enough to enter the next treatment phase.

So starting next Tuesday, July 21, I will once more have to visit the hospital on seven consecutive days, so they can give me my next round of daily azacitidine shots.

Could have been better

The schedule for the AZA-VEN treatment is, as you probably guessed right now, on a four-week rotation. One week of shots plus pills. Then two weeks of only pills, with a bone marrow puncture at the end. The fourth week has an option. Either the patient gets a one-week break from the venetoclax pills too, or they have to continue taking the pills.

The reduction from 14% to 10% is not enough, according to my hematologist, to allow for this one-week break. So I have to keep taking them daily, until the next cycle starts where I obviously also have to keep taking them.

My hematologist would have preferred to allow the one-week break, because that gives the body, and especially the blood, the chance to recover, before the next round starts. Without that recovery, the odds that my blood values become too low are higher, which might then necessitate additional measures, such as giving donor blood. While I understand how, from a medical perspective, that is not desired, I think it’s for me just a small annoyance in the grand scheme of things.

Future?

So, my next weeks will be similar to the previous weeks. Except that, perhaps, at some point I might need donor blood. Not a problem. Even with all the blood I already received over the past treatments of my first leukemia and this recurrent one, I have calculated that I have given so much blood and plasma to the blood bank before I got ill that I still have a positive balance on that “bank account”.

And approximately four weeks from now, my wife and I will once more anxiously await a phone call with the bone marrow puncture results. Will the blast cell percentage have been reduced further? Enough for a stem cell transplantation, or will there be yet another month of AZA-VEN? Or will we hear that the reduction has been reversed and the cancer is gaining ground again?

I was mostly positive and hopeful when I started the AZA-VEN treatment. After this first result, I am still, perhaps even more positive and hopeful. There is no guarantee. But at least the first round of AZA-VEN has had effect. Not as much as in some other patients. But more than in many other patients.

Only the future knows what will happen next. But I am cautiously optimistic.