(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.)

There has been a long silence in my leukemia diary. Not because nothing happened, but because I kept waiting for the next bit of news. And then the next.

I just received news that is totally worthy of an update. So here we go.

Second round

My last update was between the first and second round of the AZA-VEN treatment. The first had managed to reduce the blast percentage in my bone marrow from 14% to 10%. We were of course hoping for a further reduction. Sadly, that did not happen. After round two, the blast percentage was about the same as after round one. So while it still managed to contain the leukemia and prevent growth, it did not bring the reduction we hoped for.

Now, a less effective second round does not automatically imply that a third round will be ineffective as well. But I’ll be honest, this result did not give me high hopes. I would of course still give that third round a try if it’s my only option. But this was for me also a good reason to ask my hematologist about the status of the CAR-T study.

You’re out

He was ahead of me. He had already contacted the manufacturer to ask about the status. And this is where I got the next surprise. The internal problems were resolved. The study accepts trial patients again. Or rather, one trial patient. A very specific patient, in the Rotterdam hospital. Not me.

This felt like a punch in the gut to me. In my perception, I was on the waitlist. Ready to be called as soon as the manufacturer was ready to continue. But that is not how things work. Yes, there is a waitlist. But it’s not a first come first serve basis. Patients are constantly evaluated. How is their overall condition. Are other treatments showing good signs. What are the estimated odds that CAR-T will actually benefit them.

During the time that the manufacturer had to solve its own problems, I had been treated with AZA-VEN. With success, at least in the first round. That, in combination with whatever happened in the meantime with the Rotterdam patient, had caused them to take over as the number one on the list. So when the manufacturer was ready to recommence the test, that was the patient they reached out to. Their treatment had not started at that time, they were in the final stage of evaluation. My only hope was that they would not pass all the tests. “We’ll know more in about a week”, is what my hematologist said.

So we decided to wait for one week. After that week, if the CAR-T study is definitely off the table, we would start a third round of AZA-VEN, as the only somewhat viable option left to me.

Or in?

I was very surprised to get a phone call from the hospital the very next day. It was my hematologist, who also had not expected to call me. But he had received word that the condition of the Rotterdam patient unexpectedly had gotten worse. So much that they no longer qualified for the trial. This is of course very sad news for them. But for me, it was good news! I was now the number one on the list for the CAR-T trial!

But being number one on the list was not a guarantee. I had to go through a screening day, where lots and lots of different tests would be done to verify whether or not I am eligible for the study. That was last Tuesday, August 25. And that meant, once more, a lot of uncertainty. One of the tests is my kidney function. With just one kidney left, that is absolutely not an automatic tick mark! And another test was for a specific receptor on my cancer cells. This was also a nail biter. I had been tested for this twice before, and while the second test was positive, the first had been negative. So I was not at all certain that this third test would be positive as well.

On Friday, my hematologist called. The hospital had concluded all the tests. They were all positive. As far as the hospital was concerned, I could be entered in the study. But … that was still not a full and formal yes. The manufacturer wanted to run the test in their own labs as well. So all material was sent to them, and I would have to wait until after the weekend before I got the final verdict.

Side bar: injections gone wrong

While all this happened, I also struggled with the side effects of the second round of AZA-VEN. Or rather, the side effects of two injections that had gone a bit wrong.

One caused a painful red swelling on my stomach. The other caused a constant ache in my upper right leg. It felt like muscle pain. But the kind of muscle pain you get after climbing 70 stairs the day before. Hopping, on just that one leg. Apparently caused by either an abscess or a hematoma somewhere in the muscle.

It lasted for four weeks until that finally went away. Not spontaneously. After several failed other attempts to treat it, the hematologist ordered to have the spot drained. That would (and did indeed) instantly relieve the pain, and it also allowed the fluid that was there to be investigated in the lab, so that a more specific antibiotics treatment could be decided.

So, after a much too long period during which I was unable to do any hiking, I was finally able to resume my daily walks. I may have mentioned this before: I am not a huge fan of hiking, but I still try to do a hike every day, because I believe that a better physical condition increases my odds.

It was brutal at first. Just one and a half kilometers (0.94 miles), and I was tired. But I kept pushing myself, a bit further every day. Today, I did a 4.6 km hike (2.85 miles). And I will keep pushing myself – until the next round of treatment forces me to pause again.

Yes, I’m in!

Today, Tuesday September 1, I finally got the official results from the CAR-T manufacturer. I’m in! All tests were positive, I qualify for the study!

Now, while I consider this good news, it’s not a guarantee. I will be the 7^th patient world wide to be treated with this dosage. (The previous 6 patients were part of the first part of the study, where they experimented with different dosages; this is now the second part of the study where they do further research based on the best dosage according to the first phase).

So, what are the odds? Nobody knows. A treatment that has been applied to only six patients so far means that the amount of data is way too low to be statistically relevant. And that there is at this time literally zero data about long-term effects.

I basically have a choice now. I can at any time choose to quit the study. And try my luck with a third round of AZA-VEN instead. But the odds of that treatment are not known either. Not for the specific situation of a patient with recurrent leukemia, where the first round of AZA-VEN did have some effect, but the second didn’t. The choice I am facing is basically that of someone who is given two sealed black boxes and can pick one – and it’s only my life on the line.

Next steps

The next three days, I will visit the hospital for, as my hematologist calls it, “preparatory chemotherapy”. This will be applied intravenously, through a PICC line. This line will be inserted tomorrow, before the first dose of chemotherapy.

While the hospital visits will be quite long, three and a half hours tomorrow and two hours on Thursday and Friday, I will not be admitted yet. These are outpatient visits. But they will of course consume most of my day.

I then have the weekend off. On Monday, September 7, I will be admitted to the hospital, so that the next day, Tuesday, I can receive the CAR-T cells. After that, I will remain in the hospital for at least two more weeks, under constant observation. It is after all a clinical trial of a new, experimental drug.

And after those two weeks? Well, that all depends. Perhaps I need to stay in hospital longer, for instance because I am suffering severe side effects, or because more treatment is needed. Perhaps I can go home. This is impossible to say.

And hopefully, if all goes well, this CAR-T treatment will then reduce my cancer far enough that a follow-up stem cell transplantation becomes viable.

But that is in the future. And if the past months have taught me anything, it is that, in my situation, the future changes on a daily basis.