For the last 12-years I have been living on a razor’s edge – a balancing act between leukemia treatments, remissions, relapses, hope and despair. Keeping on the “edge” requires strength and support. We try so hard not to fall on the wrong side.
Since this past February 2022, I have been teetering from side to side. My CLL/SLL had required a second CAR T clinical trial. When that failed, I began several months of a hopeful treatment. Albeit with a drug with so many known toxic side effects, that this past September, the FDA pulled the medication from the market.
Along the way I have undergone biopsies of my liver, lymph nodes, kidney, and multiple bone marrow incursions. Not to mention multiple PET, CT scans, pints of blood testing and relocating away from our home in Sacramento.
We believed we had come to the point where a bone marrow transplant could provide a cure. Everything seemed to be in line. Lymphoma meds working – check. A 100% bone marrow match from my brother – check. Relocating to Seattle – check.
And then an ambush. On my initial appointment at the Fred Hutch, it was found that the chemo drug I was taking had caused liver toxicity, akin to a person whose liver was sick from too much alcohol, or hepatitis. I had neither of those, thank G-d. However, for my liver to heal, I was required to stop my chemo drug. That part of the plan is working. My liver is healing, now 2-weeks off the drug, although not yet back to normal.
However, either because the medication was toxic, or the fact that I had to stop pounding my lymphoma into submission, or maybe a combination of both, this past Friday I was evaluated with full body PET and CT scans. After waiting for four excruciating stressful days, the painful diagnosis was made that my lymphoma was no longer in remission.
Once again, I have fallen off that thin razor’s edge and the curative bone marrow transplant I was prepped to receive has been cancelled. At this juncture, the transplant would not have killed the cancer, although the side effects from the transplant were likely to kill me, not a risk anybody was prepared to take.
It would be an understatement to say that Sharon and I are devastated, as is our family.
So you ask, what now? We do have a plan B, although it is going to take some creative work and some time. My physician is going to apply to Lilly Oncology for compassionate use of a drug called Pirtobrutinib (LOXO-305). This drug is similar to medications I have been treated with in the past. It is not yet FDA approved and is in clinical trials. Having said that, due to my falling off the razor’s edge too many times, I do not qualify for any of the ongoing trials. Here in Seattle, we will try to create a clinical trial of one. This requires the company, Fred Hutch, and the FDA all to approve. We hope to gain that approval within a couple of weeks and begin the therapy.
In that case, we hope to move back to our home in Sacramento by early November and I will need to make monthly visits to Seattle to pick up the medication.
There is no guarantee that this will work. There is a glimmer of hope that within 4-6 months, this treatment will place me into a complete remission, meaning all my lymphoma has melted away, and if so, we can then attempt the curative bone marrow transplant. If not, I do not want to speculate.
There are a lot of moving parts here. There are a lot of emotions. We have spent the last 3-years either in treatment and/or shielding from Covid. I am not suggesting my options are coming to an end, but we know we have pretty much exhausted all that is available. To enter additional, first in human, clinical trials away from our home is not something I am eager to engage. Fingers crossed that the powers to be see me as a compassionate human being and allow one more big swing of the bat.
We so value your support, love, and prayers and will provide updates when we have something to share.
Larry and Sharon
