(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 exactly a month after my last leukemia diary entry. Not much happened for most of that time. And then a lot happened.
May 18 until June 3
Yes, I know that this entry starts even before my last diary entry, which was May 19. Deal with it.
During this period, originally planned for two weeks, but then extended with almost a full extra week, I was at home, but with three outpatient hospital visits per week. My health was carefully monitored, to see how the “maintenance chemotherapy” affected me. A few times during this period, I received a transfusion of thrombocytes (platelets, the stuff that ensures your blood clots when exposed to oxygen so that you don’t bleed out from a simple shave cut. Originally planned until May 29, but my blood values were still too low at that time, so I got an extension. June 3 was when my blood values had sufficiently recovered that the close monitoring could be stopped.
During this period, I felt well. I slowly built up my stamina by going for a hike almost every day, I did not feel sick, I ate well, slept well. All good, except for the knowledge that, somewhere deep inside my body, that leukemia was still lurking. Hopefully contained by the maintenance chemotherapy. But the only way to be sure of that would be a bone marrow puncture, which was scheduled for much later. Simply because the doctors know what the normal time line is for chemotherapy to show its full effect.
June 4 to June 14
Another period with not much to say. Things just went on as before. I did not have my regular checkups at the hospital, but that doesn’t mean I did not have to visit. Several examinations were scheduled to prepare for the stem cell transfusion, which was scheduled to take place July 3rd. But very conditionally. My donor still had to undergo some final tests. And the tests on myself could also still ruin things.
So I went for a blood test, a CT scan, plus visits with the stem cell nurse and with the hematologist on June 9. And then for the long awaited new bone marrow puncture, plus long function test on June 10. And then, on June 11, not originally scheduled, an emergency bronchoscopy, because the CT scan had revealed a spot in my lungs that might or might not be a fungal infection.
But despite the many trips to the hospital, this period was also a period with little no new developments.
June 15
On June 15, my wife and I were back in the hospital to hear the results of the bone marrow puncture. I was very nervous about this. Would the percentage of blast cells in my bone marrow have gone down even further, due to whatever caused it to go down between the two previous measurements? Would it be stable, thanks to the maintenance chemotherapy? Or would the news be bad, with an increase in the blast cells?
The news was terrible. The percentage blast cells was up. Not by a bit, but a lot. Depending on the method of measurement, it was either 17% or 21%. So clearly, somewhere around the 20% mark.
With my cancer being that active, the hematologist had no choice but to call off the scheduled stem cell transplantation. Although she did not call it off immediately – since I had shown a miraculous recovery at an unexpected time before, she did offer to do yet another bone marrow puncture, to see if the miracle had repeated itself. I of course accepted that offer.
But let’s be honest. At 20% the week before, even if it had halved since then, it would still be at 10%, which is also still much too high. A stem cell transplantation only has a reasonable chance of success if the cancer is under control, which means a blast percentage of at most 5%, and preferably even under 2%. The odds of me getting there? Very low!
So we discussed the alternatives. We asked about the other form of chemotherapy (azacitidine instead of cytarabine), that had been on the table before. That was no longer an option. Azacitidine works very slow. Which can be fine when you need to combat a cancer that is also slow. But with an increase from 3.8% to around 20% in five weeks, my cancer is clearly not slow anymore. The azacitidine has no chance at all.
My wife then asked about research reports she had read where patients were treated with a combination of azacitidine and another medicine, called venetoclax. My hematologist said that she knows about this combination therapy, that speeds op the effect of azacitidine, and that it does increase the effectiveness of the azacitidine. But she added that this combination therapy is only applied to first-time patients. It is not used for patients with a relapse.
However, she did give us one other small glimmer of hope. When we had previously discussed azacitidine, she had also found another option. A very experimental trial of a new drug, that would make CAR-T cell therapy possible for Acute Myeloid Leukemia. I had been rejected for that trial, because my cancer cells lack the receptor (CD123) that this new drug attacks. But my hematologist explained that, perhaps, the CD123 had not been found during the previous test because there were at that time only 3.8% blast cells. Perhaps there were simply too little and the CD123 had been overlooked? She did make it clear that the odds were very low. But when the alternative is death, you take even the longest of shots.
June 17
And so, we went back to the Amsterdam hospital on June 16. Yet another blood test. Yet another bone marrow puncture. And yet another conversation with the Amsterdam hematologist who is in charge of the trial. And who would talk us through the steps for this second attempt to get into the CAR-T trial, but who had also agreed to serve as a second opinion doctor for my entire case file.
He reiterated that, even though they did want to test for CD123 again, the odds were very low. After all, it is either there or it isn’t. But he then also added that these tests themselves are still under development, and that German labs use a different method. He had made sure to get enough bone marrow that he could send some to Germany and have it analyzed there. The manufacturer of the new drug had promised that if just one of the two measurements showed enough CD123, I could enroll in the trial – provided I pass all other checks. But even with two labs doing the measurement, the odds remained low.
And so we went on to the second opinion. He commented on times in the treatment period where choices had to be made. Some of those did not work out as hoped, and with hindsight, other choices could have been made. But he added that, based on the information available at the time, he would almost certainly have made the same choices and decisions as my regular hematologist.
While that was reassuring to hear, it was not what we came there for. We didn’t want to look back and spot things that could have been better. We wanted to look forward and double check whether there really was no other alternative for me than his trial – which of course was pretty uncertain already.
My wife had prepared herself excellently. A long list of questions, about things she had heard or read, about different drugs and approaches that had or had not shown promise. In most of the cases, he responded with a clear explanation why that specific approach was not applicable to me. Which is of course also an answer. The answer we fully expected to our questions.
But there was one exception. When my wife brought up the combination of azacitidine and venetoclax, he said that he knew that this is indeed an approach that some hospitals take, and that it is effective in some cases of a first-time leukemia. But in case of a relapse, he said, the Dutch health insurance does not pay for it. He did not go into the reasons, and we forgot to ask, but I assume that this refusal has to do with a combination of too high cost and too low success rate.
But even a low success rate is better than doing nothing. So we asked if it is possible to receive this combination treatment if we pay for it out of our own pocket. The answer was that this was mostly dependent on hospital policy. Within the Dutch health care insurance system, there are definitely good arguments to be made for hospitals to refuse to deliver care that is excluded from the health insurance. But not all hospitals have the same opinion, and there are indeed hospitals that are prepared to give the combination therapy to a relapsed patient. Including his workplace.
So the path forward was clear. First, wait and see what the new test for CD123 will bring. If this receptor is now found, then I can once more try to apply for the CAR-T trial. The trial is still in a very early stage, and no relevant data exists on survival odds. But based on the theory of how the medication works, it looks to be promising. However, the most likely outcome is still that I do not have this CD123 receptor, and hence won’t qualify.
And that’s where plan B comes in. After both the Amsterdam and the German labs have examined the sample, and if both examinations show no CD123, then I will first ask my regular hematologist and hospital in Utrecht if they are prepared to administer the combination therapy if we pay for it. Should the answer be no, which is entirely possible, then we can contact the Amsterdam hematologist again, and he will make sure that I will then get the combination therapy there.
So my wife and I drove home with some very small slithers of new hope. The admittedly very small, but still non-zero chance of qualifying for the CAR-T trial. And when that hope is off the table, the certainty that, either in Utrecht or in Amsterdam, we can go for the combination therapy of azaribine and venetoclax. Which probably has very low odds of success against a relapsed leukemia. But very low is still better than zero.
Oh, and then, at the end of the afternoon, I got a call from the Amsterdam hematologist. No, the CD123 test was not finished yet. But he had seen that my blast percentage had, once more, gone down. The miracle has repeated itself. It was not at 13%. Less than 20% – but still way too much for a stem cell transfusion. So the plans didn’t change. And I was left understanding even less of what is going on in my body, with blast percentages that go up when they should go down, but then go down when every doctor expects them to go up again.
And still waiting for the CD123 tests. The Amsterdam lab would likely have them by Friday. The German lab would be after the weekend.
June 19
This morning, I once more got a call from the Amsterdam hematologist. As expected. The results from the Amsterdam lab were in. Frankly, both my wife and I did not expect much of this. It was the German lab, with a different measurement method, that we had pinned out hopes on.
And so we were quite surprised when the doctor told me that CD123 was found in my bone marrow, in a sufficiently high dosage that I could qualify for the CAR-T trial.
That does not mean I’m in yet. There will be a formal entry examination next week, probably either Tuesday or Wednesday. With, once more, blood tests – which means that I am at risk of being rejected for not having enough kidney function (since I only have one kidney left). And with yet another bone marrow puncture (does anyone want to take bets on whether the blast percentage will be down, stable or up?). And further health tests. Especially for my lungs, because that spot in my lungs might also be a reason for the manufacturer to refuse me for the trial. (As harsh as it sounds, it makes sense. This phase of the trial will be performed on just twenty test persons patients. With such a small group, the manufacturer obviously wants patients who have the best odds of getting better preexisting conditions such as a fungal infection can reduce those odds. Plus, I might be taking the spot of another patient who has better odds of benefiting from the trial).
Next week
And that is where we are now. Next week, I will be officially tested for the CAR-T trial. If I pass all the tests on that day, then I’m in. That does not ensure anything. It is a trial. It might not work as expected. It might work, but not enough. Or it might work, but at the same time cause an unexpected side effect that kills me. Nothing is guaranteed. This is the kind of trial that, for ethical reasons, can only be done on patients who have no promising other treatment left.
If I do not qualify for the CAR-T trial, then we will still go for the other alternative, the combination treatment of azacitidine and venetoclax. However low the odds of that treatment may be, any nonzero odds are better than doing nothing.
Overall, I think it’s safe to say that my odds today look slightly better than they looked last Monday. But that does not mean that they look good. They don’t. It is still very likely that I will not make it through this second leukemia.
I’m not giving up yet. I keep fighting, with the help of my wife who has proven to be very good at asking just the right questions and finding just the right research reports on the internet. I still want to live. Even though I know that the odds are still not good.
Thanks for reading. I will keep you all updated in future episodes of this leukemia diary blog.
