I got good news today 4 months post CAR-T when I saw Dr. Kipps.
Hgb is over 14 so back to normal. That means the iron that I am taking is working and that my bone marrow is healthy. My ALC (absolute lymphocyte count) was 1.0, and that means are likely no B cells in my peripheral blood which is good news. Probably means that the CAR-T cells are still around patrolling. The rest of the blood count is good. Waiting for the deep testing (flow cytometry) to make sure there is no cancer. If that is negative, then a bone marrow biopsy will be scheduled to see if I am still MRD- (no cancer cells) there too.
It must feel surreal to be able to say that you’re likely cancer free after so many years of living with, being an advocate for yourself and so many, and battling this disease. I think that I can speak for those of us who have followed your journey, that we are humbled by your sacrifice, in awe of your courage, strength and resilience, and hope that you enjoy a lifetime of good health and happiness.
I hope that one day each and every one of us will someday be able to shout from the rooftops that we, too, are cancer free 🙏
Great news Brian. My wife (aggressive follicular lymphoma) is in an NIH 'humanized' CAR-T trial. She was infused on March 2, 2016 and remains in complete remission.
I’m encouraged by the progress you’ve shown. I’m on Venetoclax at the present time after relapsing from a trial of fixed duration Ibrutinib and Venetoclax. Went 2 1/2 years uMRD. Unfortunately developed a mutation that makes me BTK resistant. The Venetoclax is working well but my Dr. Friedberg has encouraged me to consider CAR-T. I am on a list to hopefully enter the 2nd or 3rd phase of a study at Wilmot. Thank you for your posts
Been on a CAR-T trial (JCAR-014) and got 5 years out of that and now am I am on a bispecific T cell engager named epcoritamab trial. You can read about in my blogsat cllsociety.org/living-with-...
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