Community Magazine

Celebrating My Two Year Anniversary Today on Ibrutinib for My CLL (chronic Lymphocytic Leukemia)

By Bkoffman
Much has happened in the last two years, most of it very good.
On a personal note, I swallowed my first 3 battleship gray capsules of PCI-32765 (it wasn't even called ibrutinib yet) on May 7, 2012 in a Phase I/II clinical trial at OSU with Dr. Byrd.
Two years later my lymph nodes have shrunk to less than 1/2 their size with the possibility that all that remains on the CT scans is the scarred shells of what used to be cancerous nodes.
Today, to find any CLL in my blood, you can no longer rely on the standard bloods test but must do the vey sensitive flow cytometry to find the < 0.3% of cells that are still clonal.
My latest bone marrow biopsy was 15 months ago in Feb. 2013 and even back then it showed only 4% CLL by flow cytometry down from between 10%-20% a year earlier.
I am clearly in a very deep and deepening remission.
I am very grateful.
On a community note, ibrutinib, the first in class signal blocker (BTK) for CLL, received breakthrough approval in the USA for anyone who has tried at least one prior therapy based on its outstanding safety and efficacy data in all patient groups, including those with 17p deletions and other hard to treat clones. But it is broadly available to any of us who have tried but not necessarily failed just one prior therapy.
Obinutuzumab, a potent 3rd generation monoclonal antibody (mAb) is now on the market and is getting complete remissions with the wimpy help of a touch of chlorambucil in clinical trials. Clearly it is this new mAB that is doing the heavy lifting.
Idelalisib, another  exciting targeted oral medication, should be approved later this year based on its stellar efficacy results in pivotal trials with few adverse events.
ABT-199 is proving to be perhaps the most potent oral agent yet in difficult to that patients.
ONO (ONO 4059) and Infinity (IPI 145) and others have very promising signal blockers well into development.
ROR1 trials are just beginning and should offer laser like focusing and very little off target damage.
CAR-T therapy has pulled a handful of patients from near death to deep remissions.
I was revising a 2012 CME (continuing medical education) on CLL program that I will be giving in Baltimore in June and realized just how far we (and I personally have) have come.
I am very grateful.
After  all, we are all in this together.
I think I''ll enjoy some  home made coconut milk yogurt to celebrate the amazing progress.

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