I’m going to explain from the beginning of last year’s first relapse to try to help tie everything up in a nice little box in “making sense” land.

So last year, when my acute lymphoblastic leukemia (ALL) relapsed in my spinal fluid and bone marrow, I had two options for treatment. One was the “standard of care protocol” which would have involved a high dose of induction chemo to bring my initial cancer levels down, then an immunotherapy chemo called “Blinatumab”, then a bone marrow transplant. The second option was a newer treatment that’s not been around as long, in which I could get into a trial to participate in. Of course I chose the more experimental trial at one of the nation’s top hospitals for pediatric cancer – so I did CAR-T therapy at the Children’s Hospital of Philadelphia.

When I was initially diagnosed with ALL in Spain in 2017, they didn’t run genetic abnormalities tests (FISH). By the time I got back here to the States, I didn’t have enough cancer cells to test. So we proceeded forward with the standard of care for pediatrics (chemo-only, around 2.5 years of treatment). When I relapsed, they ran the genetic test and found I had an abnormality called the “Philadelphia-like chromosome” in my B-cell ALL. This abnormality makes cancer slightly more resistant to treatment and makes it more likely to relapse than those with Philadelphia-negative ALL.

CAR-T has been successful in treating others with Philadelphia chromosomes (though more studies are always needed) so the fact that I was Philadelphia-like wasn’t a problem. What was a problem was that the genetically modified CAR-T cells that are supposed to kill all B-cells (leukemic and healthy) didn’t seem to be sticking around long. So with my initial infusion of them in July ’20, I required “booster” infusions in Oct ’20 and Jan ’21 because I had B-cells show up in my blood and bone marrow. In April ’21, I had a bone marrow biopsy (BMB) which showed that I had a low percentage of B-cells still. But we decided to kind of wait and watch, but really hope that the leukemia didn’t come back again. In July ’21, my blood test showed 0 B-cells, which was great news! But my BMB showed that I had 2% leukemia in my marrow. That meant that CAR-T hasn’t worked for me, I would need a bone marrow transplant (BMT) for a chance of staying cancer-free.

We had one last manufactured bag of my CAR-T cells, so myself and the doctors decided to give it one last shot at destroying my leukemia. We went to Philly from Aug 1 – Sept 10, ’21. I had a biopsy on Sept 8, we just needed my cancer to get down to non detectable levels to proceed with my bone marrow transplant a month later!

The Philly doctor called me late on a Friday, and told me that my biopsy showed 8% leukemia – so the CAR-T just didn’t do what it needed to in order for me to get to transplant without disease. My home oncologist called me Monday with a new plan – a plan that kinda starts from the beginning, the same thing we could have done last year. But I’m so glad I gave CAR-T a shot and that I got to be a trial participant – it has so so so much potential, and is really an amazing advancement in the world of cancer treatment. Plus the year I had, spending lots of it Philly (where half my family is from) was amazing – plus my physical health had such a jump in improvement – my hips/legs would never be so strong without all that fun city living/walking!

But back to my sightly sucky current life, I’m starting Blinatumab in the hospital today, the initial start requires a 72-hour stay, as there are risks of overreaction of my immune system (similar to CAR-T, CRS/neurological stuff could happen) then I’ll be hooked up and receiving chemo for 28 days straight. Like 24/7, for a whole month! Next week my dosage with increase which will require a short, 24 hour stay. Then I’ll just walk around with a little pack and get bag changes done each week. In addition, we will use a Philadelphia-chromome targeted drug called Dasatinib, it will go after the abnormal mutations that my cancer has. After this first cycle, I’ll have another bone marrow biopsy. If those results are good, we can start all of the tests and prep that come before transplant. If not, we will do another 28 day round of Blina and Dasatinib, or possibly switch drugs, depending on the biopsy results. Here’s hoping we’re headed back in the right direction again!