Wednesday, August 29, 2018

6 Years on Ibrutinib


I still have chronic lymphocytic leukemia; however, I am still in clinical complete remission. I am grateful. It has been six years on ibrutinib.

Patients in the NIH study I am participating in, who have relapsed on ibrutinib, have had prior treatment. None of the patients who have taken Ibrutinib as a frontline treatment for CLL with 17p deletion have relapsed in the study. That is incredibly good news for me.

Minimal residual disease (MRD) negative status is reached when counts are less than 0.01 percent. MRD negative status has not been found in 17p deleted participants on one drug. My last cytometry test revealed that my counts are 0.09 percent… close, but no potato.

Those participants who have reached MRD status often wonder whether they could stop taking the drug. Dr. Adrian Wiestner is my doctor at the National Institutes of Health in Bethesda, Maryland. While there is a push for stopping treatment with Ibrutinib after a fixed time, he believes there is a strong scientific argument to continue the B-cell receptor indefinitely.

Latest advances in technology have made it promising to detect evidence of cancer – minimal residual disease (MRD) – that continue even when traditional tests come up good.
Two Phase II studies of a German CLL study group discussed the value of MRD negative status (Kovacs et al, 2014). Here is the take-away: Both MRD negativity (with a threshold of <10-4leukemic cells per leukocytes) and the occurrence of a complete response (CR) predict long progression-free survival (PFS). This means a longer time without disease growing back. Perhaps this will be a prerequisite for a cure.

Take care my friends. I am hanging in there for the long haul.

5 comments:

  1. Great news!! Are there any in your arm who have been on longer?

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  2. Excellent news La Verne! I'm half way to six years on ibrutinib, and am holding out hope for a full 6 years (+more) despite multiple prior treatments and a 17p deletion! Keep up the excellent work.

    Beth

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  3. My husband has been in the same NIH clinical trial and he is also 17p deleted and has used Ibrutinib as a frontine treatment. He has relapsed after five years. He was also told that he wasn't the first 17p deleted/frontline patient to relapse. Just keeping it real.

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