Monday, July 2, 2018

10 years ago today I received my Transplant for my CLL (chronic lymphocytic leukemia)

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.

1 Comments:

Blogger sweener87 said...

Your journey has been avidly watched by many. Your courage and tenacity to beat the cll bear is gratifying. You and the cll society have been instrumental in helping so many. Thank you.

July 29, 2018 at 7:10 AM  

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