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My Personal Decision to Restart My CLL (Chronic Lymphocytic Leukemia) Treatment

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Authored by Dr. Brian Koffman

I have good reasons to believe it is time to retreat my CLL.

Before deciding on the best therapy choice to treat my CLL / SLL (chronic lymphocytic leukemia/small lymphocytic lymphoma), I first needed to determine if it was the right time to start therapy.

In most cases, the decision about when to treat CLL is usually just that: a decision. iwCLL has clear guidelines for when treatment is indicated, which we outline in this article: CLL: When to Watch and Wait and When to Start Treatment. I think these might be more helpful in outlining when therapy is not likely appropriate because none of the iwCLL indications are met. For example, someone might have a lymphocyte count that has reached 100,000 or even 500,000 and not need any therapy if they are feeling well and have no low blood counts.

On the other hand, just because one’s platelets have dropped below 100,000, which is an iwCLL indication to treat, that does not mean that one urgently has to start to knock back the CLL with medication, especially if the downward trend is slow with ups and downs. One might choose to wait and follow the trend. Or not. It’s a shared medical decision.

What about the opposite decision, namely starting sooner than iwCLL guidelines might suggest?

That is what I am choosing.

Let me start by saying this is my personal decision, relevant to my circumstances, and likely not applicable to anyone else.

In brief, I was diagnosed with CLL in 2005, an aggressive variant, and within a year, I was in a world of trouble with single-digit platelets from a rare and, in my case, difficult-to-treat autoimmune complication (immune thrombocytopenic purpura or ITP) that resulted in multiple hospitalizations, an urgent splenectomy, and massive internal bleeding. ITP tried hard to kill me several times, came close, and I know how lucky I am to be alive. The ITP and the fear of it raging again drove my decision to get a first remission hematopoietic stem cell transplant (HSCT or bone marrow transplant) that quickly failed. My subsequent jump into two phase 1 clinical trials saved my life; the first was for PCI-32765, later to become the practice-changing therapy, ibrutinib, and then for JCAR-014. This CAR-T construct helps birth list-cel, a promising CAR-T cellular therapy already approved in other blood cancers but still experimental in CLL. Both gave me years of deep and wonderful remissions. My fear of recurrent ITP is my primary driver to treat it early again.

After beating the odds with a 5½ year remission with CAR-T, my CLL is demanding my attention again. But not in the usual way.

True, I have some symptoms that need attention.

True, there are advantages to starting some therapies earlier when the disease burden is low. With some therapies, this can mean both higher efficacy and lower risk of adverse events when the cancer is being rapidly killed, especially early in the treatment.

True, some treatment options, especially those in trials, may have narrow windows of accessibility, and when a slot is available, it may force a quicker move than planned.

But the real impetus behind my decision to treat now is that I am not waiting for my blood counts to fall. I know that when my platelets fall, they fall off a cliff. In the past, my lymphocyte counts were only slightly elevated when my platelet count fell dangerously low. My other blood cell counts were all perfectly normal at the time. My ITP doesn’t send a notice that it’s on its way.

Today my absolute lymphocyte count is only 3.8, barely above normal, and only about ¼ of those are monoclonal chronic lymphocytic leukemia cells. That is a very low number, but I know it’s been doubling every 2-3 months for a long time with no signs of slowing down because I have been following it closely with MRD (measurable residual disease) testing using NGS (next-generation sequencing) specifically Clonoseq since it was barely detectable at 1/1,000,000 cells.

I am not waiting. My CLL is coming back. It’s not if I’ll need therapy; it’s when. With my CLL’s return, it carries the risk of reawakening my ITP.

I am making a preemptive strike. In Julius Caesar, the play by Shakespeare, Brutus could have been talking about my ITP instead of his plot against Caesar “Think him as a serpent’s egg, / Which, hatched, would as his kind, grow mischievous, / And kill him in the shell.”

I won’t let my ITP hatch. I am treating early.

Your decision is likely to be different. Waiting and postponing therapy is often the very best option. Everyone’s case is unique. The only universal is that nearly always the timing of when to start treatment for chronic lymphocytic leukemia should be a carefully considered shared medical decision between the patient and the healthcare provider.

Stay strong; we are all in this together.

Brian Koffman MDCM (retired) MS Ed
Co-Founder, Executive VP, and Chief Medical Officer
CLL Society, Inc.

15 Responses

  1. Thanks for sharing. Excellent thought process. Good luck. I am in my third round of treatment in 12 years. Everyone’s journey is different but we are all pulling for each other

  2. Dear Dr. Koffman,
    I think it is simply too inadequate to say that I am sorry that you feel the need to undergo therapy once again. Based on the story of your CLL history which is dramatically more dire than my current experience with Trisomy +12 which after 3.5 years is starting to show doubling but not at this time sufficient to warrant treatment. Let me better say as Henry V said, “Once more unto the breach dear friends once more….” You are, indeed a great warrior against the scourge of CLL, not only for yourself, but you have taken it upon yourself to marshal all of your resources as a physician and a mortal human being to lead all of us through the process, leaving us not bereft on this treacherous journey. You provide infinite hope against relentless odds. You encourage all of us to face our futures empowered by the knowledge you and the CLL Society provide us. Under your leadership, we too, have become captains of our own destiny. For this I, as one of many, remain deeply in your debt and offer what strength I (we) have to you in this new battle you have begun. With unlimited faith I believe this will be just one more skirmish along the way from which you will return in health and well being to continue to lead us with your optimism and a can do effort that we can and we will overcome. Thank you.

  3. Urs and I see you as healed and whole as you truly are. You are such an inspiration and a reminder of the truth. Blessings to you and Patty.

  4. Amazing! Touch upon subject with explanations I would never thought about with me diagnosis of CLL which I had for 7 years. What I believe will eventually make me transition to that heavenly life is the mental health issues I have been forced to accept for the past 2 years due to so-called family members. But just know I thank you for your message. Brilliantly done. Amen. Continue to be Blessed and Healthy.

  5. Dear Dr. Koffman,
    I am very sorry to hear this news of your having to return to the “battlefield” for your own well being,
    but am encouraged by your spirit and the available medical tools to
    fight the disease. That you have fought and won for many many years (by any accounting) is more than just “remarkable.” It borders on, in my view, the miraculous. And that’s where my own prayers are focused.

  6. Thanks for all you do for us CLL / SLL-ers. You are so inspiring. God bless you on your journey!

  7. Thank you for your personal history. I recently had to stop my acalabrutinib due to a new issue with my GI. After 10 terrible days of extreme diarrhea, my team had me go to ER, and from there admitted to a room for mor tests. After a colonoscopy, and addition of a treatment with steroids, I was diagnosed with Lymphocytic Colitis, and for the 6 week steroid treatment I had to continue to abstain from my BTK blocker for the CLL treatment that I have had great success with, especially with the healing of my kidneys that were in stage 4 failure connected to the CLL based on the kidney and bone marrow biopsies. With regular lab monitoring, my Dr decides when to get packed RBC transfusions or hydration/potassium infusions. With the colitis my potassium levels have been very low. I’ve bern off the BTK Blocker now since July 5 and we are now at August 23. I believe we will return to the acalabrutinib once I’m done with the steroids.
    Do you know how the two diagnosis parallel each other, how nutrition may need to be adjusted to not have the colitis flare up again when off the steroids? Or are these just two separate issues to be handled as needed?

  8. Hello Dr. Koffman,
    I’m sorry to read your update. This is Sami Khal, from the CLL forum. I was about to sign onto Hospice in March. I was able to get Pirtobrutinib off-label, and it put me into remission, quickly. We don’t know whether it was the CLL or the Richters that was killing me, or a combination of both, but, it is working for now. I’m heading to Mayo in Scottsdale to start Allogenic Transplant. Keep Pirtobrutinib on your radar. If things get bad, it may work for you too. I’ll be praying for your success!!

  9. You have been guiding light in my journey with CLL. I hope you have great results with your treatment and can lead the others to their successes. Your experiences help us all. God bless you.

  10. Thanks for sharing. We pray for success and continued good health. We have been following your journey since 2010 when I was diagnosed. The information we learned has been invaluable. I was watch and wait until I needed treatment in Dec. 2014. I was fortunately to get accepted to the ACP- 196 (Acalabrutinib) trial and my health immediately improved. I have now been on it for 8 1/2 years with no side affects. Again, blessings.

  11. Your forthrightness, courage and truths are inspiring….Thank you for all that you have done and continue to do. Well wishes and healings to you and Patty.

  12. Your posts are truly helpful, informative and inspirational. Wishing you all the very best on your Epcoritamab trial.
    I have recently had my first scary ITP episode where with no notice my platelets dipped to single figures so I share your concerns about not wanting to repeat that experience! I now need to be quickly weaned off steroids over next 4 weeks (still on 40 mg od but coming down from 80 mg!) thanks to ‘malaise and extreme fatigue’. A couple of nights in hospital with IV IGG and steroids have bounced my platelets back up but slightly anxious times as I come down off these steroids now. I am 5 years post FCR …pretty good for unmutated…so now looking at my second line treatment options in UK. As you say …we are all in this together…you take care and keep sharing when you feel up to it. Anything that can boost our T cell activity sounds very useful to buy us some extra years of healthy remission. Thank you.

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