Happy New Year!
The beginning of a new calendar year is not a good reason to make radical changes, but it may mark a timely moment to reflect on what’s gone well and what could be better going forward.
My trial news is boring which is always good. My labs remain steady with a reassuringly low end of normal lymphocyte count so there is not much room for the cancer to hide. I am mildly anemic again 4½ months into the trial. I expect it’s just a blip, not a trend, so I will watch it.
My cardiac workup, including a stress echocardiogram, proved I was in good condition and demonstrated no evidence of cardiac disease other than my blood pressure rose too much with the peak of my heart rate. I am watching my BP more closely and might be augmenting therapy. Cancer patients are at higher risk for heart disease, and vice versa.
Over the last few weeks, my joint and muscle pains have significantly increased and spread across my upper and lower limbs and up and down my neck and back. It’s challenging to pin down a cause: increased frequency of weight training sessions, a very bad massage that made things much worse instead of better, general wear and tear and aging, damp weather, or increased inflammation from general activation of my T cells caused by the epcoritamab flaring up my already advanced widespread osteoarthritis. Muscle and bone pain are listed as one of its most common side effects, but I wonder if that listing is related to cytokine release syndrome (CRS). I didn’t have these pains for several weeks, and my doctors say they aren’t seeing them in other epcoritamab patients. That said, I had horrific musculoskeletal pain with my CAR-T therapy, a more potent T cell activator, and milder but significant problems with several other meds I have taken, including ibrutinib. My muscles and joints are my Achilles heel (pun intended). It’s no fun hurting, but I can live with it.
Results from my MRD (measurable residual disease) testing are pending. It’s early, but all seven CLL patients in the European study of epcoritamab who were in complete remission, like me, also achieved undetectable MRD with flow cytometry down to 1 in 10,000 cells. Fingers crossed.
Overall, despite some hills to climb, the timing and decision to start this particular trial where and when I did looks like a smart move with great promise. Others seem to agree. I may have been the first CLL patient in this trial, but I understand there is a significant waiting list for the trial now. I like to think my blogging played a role in improving awareness and accrual.
Looking toward the future, my first effort is to find a path to better pain control. It’s tough to ignore, and it keeps me awake. OTC meds aren’t cutting it. And I am already on a very stringent anti-inflammatory regimen. I’m researching my options.
Second, I need to figure out the best way to trace the progress of my trial, as I can’t rely on routine imaging or bloodwork to reveal continued improvements. MRD testing, including ClonoSeq, will be part of the evaluation, but at what cadence and when in the blood and when in the marrow?
The next big effort is gauging my safety regarding infection risk with increased engagement in the world. I survived ASH with 30,000 docs and others without catching the wave of increasing COVID-19, but I was carefully and constantly masked. IVIG also helped. I would love to discard my mask indoors, but I am not ready. Outdoors, I am much less worried. I restarted swimming laps at the local club to test if less walking helps my knee pain. My walking goal last year was to exceed 2022 by 1,000 steps a day, and I did that by almost 1,200. I plan to back off this year and see if conserving is truly preserving. I pushed myself pretty hard last year, which isn’t always good.
2023 is in the books. Expectations were generally exceeded. 2024 may or may not need some tweaking of my course. I am getting ready for all possibilities and am upbeat about the prospects.
Stay strong; we are all in this together.
Dr. Brian Koffman MDCM (retired) MS Ed
Co-founder, Executive VP and Chief Medical Officer
CLL Society, Inc.
13 Responses
Dr. Koffman,
Thank you for the update to your treatment, it is always great to hear that you are up and around in the world especially at ASH!. It is really helpful to learn what the best practices are for engaging safely (or as safe as possible) with these winter months especially.
I look forward to hearing the developments you will have later this month.
Thanks again,
Charles
Thank you Brian for your updates. I eagerly read each of them. Fingers crossed for your improvement!.
Way to go Doc, glad that the numbers look good. Hopefully you figure out the aches and pains quickly.
Many thanks as always,
Jeff Z
Thanks for the detailed update doc. Always good to hear about your progress and success with this new emerging treatment. Your experience and dedication to posting your journey gives awareness and hope to all that may follow.
Equally good to hear you are surviving this year’s COVID.
Stay strong!
You’re paving the way for all of us in this CLL boat. I am so grateful for what you do for us and so glad you are making progress on your new treatment. Pain control is so important and I hope you make progress with this dragon.
Hi Brian, since OTC meds for pain management can commonly raise systolic and diastolic BP do you think efforts to manage your pain is operative in elevated BP?
Sending healing wishes. You are dealing with a lot and helping millions along the way- a very special guy! Thank you!
Thank you, Doc for all that you are doing for all of us! You are a brave individual and your “pioneering” efforts will pay dividends for the rest of us. We cannot thank you enough.
Thanks for the update. Overall, very positive news and I’m looking forward to hearing more of the same. I agree, without evidence, that Ivig has given me resistance to the more powerful effects of COVID. Having a physician go through the rigors of a trial, gives a perspective that is very welcome to a long term CLL patient like myself. Thanks for all you do.
Sandy P
Brian,
You state you have widespread osteoarthritis. Are you at a point where you might consider joint replacement surgery, now or when your treatment regime is completed if it hasn’t already been? I am a CLL patient and I have had two knee and one shoulder joint replacement surgeries. They are tough and rehab is long a difficult but the end result is vastly reduced pain and dramatic improvement in quality of life.
Best of luck and thanks for all you do for the CLL community.
Thank you – for participating in another trial and for sharing the experience. We all benefit.
I wonder if CBD or medical marijuana would help alleviate your pain.
Dr. Kaufman, thank you for sharing your journey. I’m extremely interested in the CarT therapy. I just switched from Venetoclax to Jaypirca because of an apparent relapse. I also did the Ibrutinib Venetoclax fixed duration study; uMRD for 21/2 years but after 3 years mutated to BTK resistant. Aggressive form of CLL.
Keeping us informed extremely important for patients like myself!
Brian
I will certainly be praying for a positive outcome for you as you have done so much for me in my journey with CLL. I really appreciate all you do & have done
Steve Thore