Decisions, decisions

 "If you know the path broadly, you will see it in all things." - Miyamoto Musashi

NOTE:  I'm trying to make each of these leukemia treatment blog posts stand somewhat alone.  One never knows where an internet search will bring someone, so if there's some repetition, that's why, and my apologies for being redundant!

We had a much too short reprieve from downtown Seattle apartment life - we were back home in Idaho for just over a week.  In early March of 2026 it was time to return and face the music at the Fred Hutch Cancer Institute.  I had been diagnosed with Acute Myeloid Leukemia in December of 2025, gone through two rounds of chemotherapy and hospitalizations in Idaho, and sent to Fred Hutch in Seattle for a possible bone marrow transplant.  This would be the final treatment part of the journey to be free of leukemia.  

Fred Hutch is a research clinic.  I had already enrolled in "medical studies" - I felt an obligation to provide any information possible that might help other patients going forward.  One study was on how the treatment affected the aging process, so they took several blood samples during the treatment, and performed physical and cognitive testing.  I also had to wear an iFit watch for the duration.  The other study was on treating a specific bowel infection without using antibiotics.  They intended to treat it instead with macrophages.  However, I did not have those particular pathogens in my bowels, so I was dropped from that second study.

 We met with the attending oncologist, a tall, slender balding older gentleman with a very strong German accent.  He met with us for the intake consultation, having reviewed all the information they had previously gathered regarding my health and the residual leukemia.  What he told us was not very encouraging, but I found it amusing.  

He said. "I've looked at your medical data, and you are not really a good candidate for transplant.  There is too much residual leukemia.  I have no doubt that I could get rid of the leukemia through chemotherapy, but doing so would also kill you.  We don't want to do that though."  At that point I laughed, and I think he was a bit startled.  I have a dark sense of humor, even regarding myself :)

Then he said, "We have a team meeting later in the week.  We will discuss your case with the other oncology team members and see if some other treatment might be more likely to succeed.".  At that point the consultation was over, and we took the shuttle back to the apartment, wondering what might happen next.

No need to worry about it though.  I'd had a hankering for fresh seafood, and since we were staying in a fishing city, I convinced the wife that we needed to get out to dinner and have some of it.  We tried a meal at Chinooks's at Salmon Bay.  The food was delighful, but the ambiance left a bit to be desired,  given the expense.  Also, watching a pier rat scurry across the bike path as you dine is somewhat unappetizing.  I will say that the clam chowder was divine though!

Soon enough, it was time to have a second consultation with the same oncologist - they switch out at the end of each month - and this time he had a proposition for me.  The oncology team had discussed my case and came up with the possibility of enrolling me in a research study, one that might have a higher possibility of getting the leukemia into remission than a third chemotherapy session would.

He handed over a thick packet of paperwork and outlined the nature of the study: They were proposing to inject me with a liquid that would specifically bind only to leukemia cells, and destroy them with an attached short-lived radioactive alpha particle emitter.  As a guy who had once worked in a nuclear research lab, I was intrigued, fascinated, and interested.  As a leukemia patient without many other options, I was also interested :)

After the meeting, we took the shuttle back to the apartment yet again, and before we had been there more than an hour, the oncologist called.  He highly recommended enrolling in the study, and said that we just needed to sign the documents he had provided, and he would get things rolling right now.  I told him that we had already discussed it on the ride home, and that I had reviewed the documents, and that it looked very promising.  At this point there wasn't another option, and it's not as if I was afraid of radiation!

Shortly after that conversation, the little application on my phone started pinging with new medical appointments.  One after the other, appointments were cancelled, and different ones were added.  I had been enrolled in a medical study, and hadn't even even signed the document agreeing to it yet :)

"The study" was part of a Phase IIb clinical trial.  Phase II of a drug or procedure trial is to determine whether or not the new approach is effective.  Phase IIb is to determine the ideal dose to be the most effective, with the fewest side effects.  

Long ago, I had read an article about a medical treatment in Scientific American, where radioactive alpha particle emitters were being experimentally injected into cancer patients, and the radioactive atoms were attached to compounds that preferentially bound to the solid cancer.  These radioactive liquids would accumulate in the cancer and destroy it, leaving healthy tissue (mostly) undamaged.  This type of radiotherapy is called "Targeted Alpha Therapy"  The study that I was enrolled in was pretty much the same thing, and differed only in the details, because mine was a blood cancer, rather than a solid one.

My Study: (please read the link!!!)  Acute leukemias are very difficult to treat, but they are highly susceptible to radiation, and readily killed by it.  Therefore research has led to the development of antibodies that are commonly found in leukemia cells, but are rarely found in normal tissue.  These antibodies are then used to deliver a payload of radiation to the leukemia, while avoiding accumulation in healthy tissue.  The antibody for delivery is called CD-123, and it is joined to the radioisotope Astatine-121, an alpha-particle emitter with a half-life of 7.2 hours.

Alpha particles cause massive biological damage, but are extremely short-range.  They frequently break both DNA strands in a cell, thereby killing it.  Had you asked me at any other point in my life if I would be okay with having an internal dose of alpha radiation, I would have assumed you were insane.  In this case, it was targeted, and very much necessary.

Again, as part of a Phase IIb trial, my part was to determine the best dose to have maximum effect and minimum side effects.  As a part of that trial, I was also injected with radioactive Iodine-123 with a half-life of 13.2 hours as a tracer.  The Iodine emits a gamma ray which is detectable outside of the patient's body, and can therefore show what other organs the Targeted Alpha Therapy might be damaging as an undesirable side effect.

Due to the short half-life of each of these radioactive isotopes, they have to be manufactured just before they are used.  It's a race against time to get them joined to the antibody, in a sterile environment, and injected into the patient before they decay and become useless.  The isotopes are created in a nearby cyclotron, using an alpha beam hitting a target that transmutes into Astatine-221, at which point the countdown begins.  The process of creating the isotope begins at midnight, and joining it to the antibody consumes most of the day, and administration of the drug begins that evening.

Before the treatment could begin, additional testing needed to be performed on my liver - so once again, given my drinking history, I was somewhat nervous that I would be rejected based on the condition of my liver.  The testing was pretty extensive.  I was scanned with ultrasound, provided additional blood samples, and had to undergo my first-ever MRI.  The MRI was to determine the iron loading of my liver, and to perform an elasticity test of it.  

Why the additional testing was necessary:  As you receive more and more red blood cells during chemotherapy, your iron levels go up.  The liver removes them, but they accumulate there, and apparently there is no mechanism for the liver to rid itself of all that iron.  It can affect kidney function.  The elasticity test:  The liver tends to develop fibrosis under hard drinking, which hardens it.  They put a vibrating device over my liver during the MRI, and it shook the liver during the scan.  It was a weird experience.  Happily, the much-abused liver came through once again!

A week before the study treatment began, I met the RN who would be in charge of the process, a wonderful lady named Delores, who had been in nursing since the late 1970's.  Her only practice at this time is to work with patients doing research for the Astatine study.  She gave me a bottle of non-radioactive iodine to load up my thyroid, so that the radioactive iodine tracer would not accumulate there and damage it - and also invalidate the distribution part of the study.

Below: Delores, the woman about to administer the life-saving Astatine-221 treatment.

The Astatine treatment was the only point in time that I had to be hospitalized.  The radioactive nature of the treatment required specialized equipment that was not available at the clinic level.  I stayed in the hospital for just one night.

Delores first administered an IV of non-radioactive monoclonal antibodies, to eliminate what she called the "low-hanging fruit".   I'm not familiar enough with that to understand, other than they would apparently remove or eliminate some of the easier-to-get leukemia cells floating around.  

Next, the radioactive stuff arrived in a lead-lined box that also contained a metering pump.  At that point, my wife was told to leave, so she headed back to the apartment.  The night would be a sleepless one, because this was part of a study.

The injection began, and it didn't last very long - maybe three hours.  At the end of it, Delores drew a few blood samples as part of the study.  They were marked radioactive, which I thought was pretty wild!

After the "hot" (radioactive) IV, Delores gave me a third IV, once again containing monoclonal antibodies, as a final flush, to hopefully clear any residual leukemia.  Delores mentioned off-handedly that the study I was involved in had been halted for several months, and that I was the first patient involved in the resumed trial.  I asked why the study had been halted, and she said that they had damaged some people's livers, and had to develop some additional safety protocols.  This explained the (expensive) MRI testing on the liver.

I told Delores at one point during the long night that I very much hoped that this treatment would get me into remission, to which she replied, "Oh don't you worry about that, it will!".  Which was encouraging, to say the least.

One of the most unbearable parts of the entire leukemia treatment was about to take place, and it had nothing to do with the injection.  I was taken to a whole-body gamma-ray scanner and told to lie absolutely still, flat on my back with arms stretched up above my head.  My shoulders were in agony  within about 5 minutes, but the entire scan took 30 minutes.  

The detector rotated around my torso.  It would rotate about 10 degrees, and pause to scan for half a minute, the it would rotate again and pause until it completed a full circle.  Then the bed would slide forward a couple of inches and the process would repeat.  Being in that position for so long was a painful experience.  The study required the scan be performed twice, four hours apart - so they could see where the medicine was concentrating besides the bone marrow.  I was only able to maintain that position because I didn't want to ruin the test and invalidate the study, or worse, have to repeat the scan.

Below: A whole body gamma tomography machine.  The two flat detectors rotate, hold position while they scan, then rotate slightly again and scan until a full 360 degrees are completed.  

Below:  The position I was required to hold for 30 minutes, twice.  I wish my shoulders were younger.

The following day, after a mostly sleepless night, I was released from the University of Washington hospital.  I felt perfectly fine, aside from the lack of sleep.  Delores left me with instructions to make sure that any bodily fluids were not touched by anyone else for 24 hours, and after that, life could return to normal.