Tuesday, August 22, 2023

My personal decision to restart my CLL (chronic lymphocytic leukemia) treatment

I have good reasons to believe it is time to re-treat 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


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