July 1, 2008, Canada Day, was my first Day Zero- my first shot at a cure when after conditioning chemo-immunotherapy of FCR, I received my hematopoietic stem cells from an unrelated donor who I later discovered was a wonderful rabbinic student from Israel.
The allogeneic HSCT didn’t work, but the chemo did give me a short but deep remission. I never engrafted, and when I quickly relapse, my cancer was meaner, a 17p deletion had shown up and my chronic lymphocytic leukemia required a new approach. The good news is that as I never engrafted, I never had the risk of graft versus host disease, the plague of so many allo transplants.
The transplant did also buy me some time before I needed treatment again and the longer you can wait with all the progress happening in CLL therapy, the better are the new options that are being developed.
Fortunately my timing was great. When I couldn’t put off therapy any longer, I was able to jump onto and ride a trial of ibrutinib, then called PCI-32765 in a phase 1B/2 trial out of Ohio State University for seven great years and form many new friendships, especially that with Dr. John Byrd, my doctor at OSU.
When I could no longer ignore the fact that the ibrutinib had stopped blocking the B cell receptor, that one CLL clone had mutated around it with a gain of function PCLƔ-2 mutation, I swung for the fences again, this time with an edgy experimental CAR T trial at the Seattle Cancer Care Alliance.
My second Day Zero was March 22, 2018 when I infused with my own generically modified T cells. My latest shot at a cure!
After a very, very rough course, documented in my CAR T blog, I am MRD (minimal residual disease) negative- I have no detectable CLL in my blood, my nodes or my marrow. And I have mouse genes in me still. My CARs are still around patrolling my blood for any CLL cells.
September will be 13 years since I was told that I had cancer. I should have been dead years ago, but I took big risks that paid off, and as of today, I have the least leukemia on my body that I have ever had since diagnosis.
The extra time has allowed me to blog and establish this nonprofit, The CLL Society, that is making a difference for thousands of CLL patients around the world.
I am one lucky guy. CAR T may not be my last move, but it has gotten me to a very good place and I am so grateful.
Please reach out to us to share your CLL story with others here. We learns do much from each other.
Later this week I am going to see the DEAD & COMPANY so I think I am allowed to say: “What a long strange trip it has been.”
We are all in this together.