As some may recall, I finished my 14th cycle of the MAJIC trial A&V arm in January of 2024. At that time, my CT scans were clear, my bone marrow showed no evidence of disease, but my peripheral bloodwork did show some CLL cells. Because of the bloodwork, I was told to continue the A & V for another 12 cycles. In October, at the end of the 12th cycle, I had CT Scans, more bloodwork, and another bone marrow biopsy. On November 14th, I had a follow up and was told that my CT Scans were clear, and my bone marrow biopsy still showed no indication of disease. Unfortunately, my bloodwork results would not be released due to trial protocols. My doctor offered to have it tested for me, but insurance and I would have to pay. Maybe I did the wrong thing, but I decided to not test my blood and go with the results that I had ... I had reached complete remission and uMRD in my marrow, so I will accept that. Even if I had not reached uMRD in the blood, I would still stop all medications per trial protocol. I am enjoying not worrying about taking the medications, and I am trying not to worry about the bloodwork. I think it is good news, and I am happy and thankful!!!
Lisa
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Horatio2
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Amazing results🎊definitely enjoy a drug free life ❤️I tested uMRD in blood and my CLL consultant wasn't keen on getting my bone marrow tested (I'm in the UK) as I reached the end of my treatment amd it would not make any difference. I think if I had really insisted, she would have probably given in and I would have been able to have it done - as she has always done things that were usually not in line with what others experience in the UK - just because I asked for it and I think she cares about my mental health as well...but I was thinking just like you...I will take the uMRD in blood result and be happy with that. Wishing you all the best and a very long uneventful remission.
I like your decisions to forego the last test. With the results you have gained, to chase down either another assurance or not quite as well as expected is to pick at the scab. Enjoy you hard earned outcome. 🙂
Hi PulsedTherapy. Sorry it has taken me so long to answer your questions.
1. I am 6q, 11q, and 13q deleted and unmutated IGHV.
2. No adverse reactions.
3. The BM biopsies were not painful ... just uncomfortable. They did heal quickly.
4. The doctor did not think it was unusual for the PB to still have evidence of disease while the BM did not. I believe there are several others on here who have had the same experience.
5. My ALC was 88.5 when I started the trial. My ALC was not the actual reason we decided to treat. I was feeling extremely fatigued and had large lymph nodes throughout my body. To be honest, the enlarged lymph nodes at the base of my skull and around my neck put me in such anxiety. I was constantly feeling them, terrified and depressed constantly. I just told my doctor that the fatigue and, to be honest, the anxiety and depression I was feeling were more than I could emotionally handle. When I had my FISH test initially done when I was diagnosed in 2019, I was 11q and 13q deleted. Before I began treatment, the new FISH test found that my disease had mutated (if that's the correct term), and I was also now 6q deleted. The doctor thinks that is why I was so fatigued. I had never heard of 6q.
Thanks for the update Horati2, I really appreciate it. And great to hear no AE and a good experience with BM biopsy, both very encouraging.
If uMRD in BM and not in blood is not unusual, my guess is that it's not uncommon that residual population lingers in the lymph nodes, which I've seen reported as the hardest place to clear. Even though you had a positive experience with BMB, still makes me question its value when the lymph remains a complete mystery.
Those symptoms sound awful, but exactly right. I'd think the fatigue was the result of CLL cells crowding out the RBCs causing anemia. Did you also experience the night sweats I always see on the diagnostic list?
Also, AV seems like a very effective drug combo. How long did it take before you started to see improvements with the lymph node swelling.? I've heard venetoclax works very quickly.
Thanks again for sharing, and congratulations on the results.
It could also be that the results weren't back yet. It takes 10 days for Adaptive to process the sample and produce a ClonoSEQ report.
I ran into a possibly similar thing on my trial at M.D. Anderson. They do not post ClonoSEQ results into their MyChart portal. Adaptive has their own portal for doctors only - no portal for patients. So MDA happily made a paper copy of my report for me. I suspect some of the problem is that ClonoSEQ is new, and not all staff are comfortable answering questions that may come up, and some of the problem is that they can't get Adaptive to electronically transfer the results straight into their Epic medical records system. So it's a manual procedure.
I was later able to call the Adaptive Customer support line, and get through to the proper people to negotiate an agreement whereby my MDA doctor agreed that I could have access, and Adaptive sends me PDF copies of my results.
They said I needed to e-Sign a Patient Authorization form, and to then talk to clinical trials team. I believe they got approval from my doctor. Ever since getting that done, I just email them each time, and they send a copy.
Hello! I'm so happy for you! I had the same initial results as you, and had to continue for another 12 cycles as well. I am anticipating completing my meds for the trial in March, with CT and blood testing in April. The bone marrow is optional, so I have chosen not to have it as the outcome will be the same. According to the study, the meds will stop regardless. I am grateful to be approaching the end of the study, and feel well overall. My regular bloodwork shows neutropenia , low wbc's and platelets that hover in the 70s. My doctor says he anticipates that these will rebound after I stop the meds. I am grateful for the opportunity to be on the trial and have access to this pairing of meds. I pray you have a long and forever remission!!
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