The saying goes – If at first you don’t succeed at try, try again. This is fortunately the position we find ourselves in.

Since the end of October, I have been treated with a yet to be FDA approved drug, Pirtobrutinib, for my leukemia/lymphoma (CLL/SLL). This has been offered to me on a compassionate use basis as a clinical trial of one.

I returned to the Fred Hutch Cancer Center this week, and long story short, the medication has done its trick in a stunning way. I am in complete/total remission. The lymphoma in my neck, liver, and kidney are nowhere to be seen.

I have again been given the option of treatment with a bone marrow transplant. In baseball terms, swinging for the fences. This is the try, try again part. My brother has lovingly agreed to be my donor. Sharon and I will be relocating to Seattle, with our tentative arrival date estimated in early May. If all goes as planned, we will live in the Pacific Northwest, blocks away from Fred Hutch through September.

As we learn more about the timing and particulars of this treatment, we will relaunch our blog so that there will be regular updates.

Sharon and I are processing this turn of events and not taking the decision for transplant lightly. The usual course of a bone marrow transplant could take a year of recovery. I have asked if I could just continue the current medication that has done so very well for me. The challenge is that it is expected this drug will lose its effectiveness in the next 12-18 months. Like falling off a cliff, once the drop begins there is no coming back. If I was to relapse again, the bone marrow option would be off the table, and just as important, there are no new promising treatments for CLL in the pipeline in the foreseeable future.

Although I know so many things can go wrong with this kind of treatment, I am a glass half full kind of guy. The world seems to be spinning off its axis a bit.   I feel like I have missed a lot being bubbled up against Covid as I am one of the few who are immunocompromised and can’t just live as if the pandemic is over. However, being in this fight to beat cancer for the long-term I want to see how our planet betters ourselves, and more importantly be with our family watching their growth, experiences, and successes.

As we glide into the Passover and Easter season, we wish for you only good things to fill your hearts with joy and fullness.

Sincerely,

Larry and Sharon