Community Magazine

10 Years Ago Today I Received My Transplant for My CLL (chronic Lymphocytic Leukemia)

By Bkoffman
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 from Israel.
The allogeneic HSCT didn't work- though the chemo gave 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 transplant did however buy me some time before I needed treatment again and the longer you wait, the better are the new options that are bee 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 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 working, that my CLL had mutated around it, I swung for the fences again, this time with a most 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.
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.
September will be 13 years since I was told that I had cancer. I should have been dead years ago, but I took 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 the nonprofit CLL Society that is making a difference for thousands of CLL patients around the world.
I am one lucky guy and my future looks bright.If you want a personal response, or just want to stay in touch, please email me at [email protected] I have no other way of contacting. Thanks. Stay strong. After all, we are all in this together. And please visit our website: http://cllsociety.org for the latest news and information.

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