There’s an old joke about the Klopman Diamond. It goes something like this:
A businessman boarded a plane to find, sitting next to him, an elegant woman wearing the largest, most stunning diamond ring he had ever seen. He asked her about it.
"This is the Klopman Diamond," she said. "It is beautiful, but it's like the Hope Diamond; there is a terrible curse that goes with it."
"What's the curse?" the man asked.
I’ve now had a year’s worth of experience with Revlimid, aka lenalidomide, and I have come to think of it as the Klopman Diamond of CLL treatments.
In my case, Revlimid is stunningly beautiful when it comes to controlling autoimmune hemolytic anemia, reducing absolute lymphocyte count, and increasing hemoglobin and platelets. It even does a respectable job of reducing lymph nodes. This is pretty much what any CLL patient could want, especially one who has had several other treatments.
But it comes with a curse: unpredictable side effects that in my case have a little too much to do with clot formation. Not for me the simple neutropenia that bedevils many patients, or just the tumor flare and fatigue I reported early on. I get the full Klopman –- i.e. the prospect that some kind of clot will do some kind of damage that I really won’t like.
Presumably the lady with the diamond stays with Mr. Klopman because he provides so well. And so it is with me and Revlimid. It’s a rocky marriage. Happy overall, but punctuated with incidents that create a certain degree of apprehension.
* * *
After a year of being on Revlimid most of the time, it’s time for a trial separation. I went off the drug on March 15 and plan to stay off until I need to go on again. It’s time to give my body a rest.
That was my oncologist’s take at a recent meeting, and I agree. There’s no proof that staying on constant Revlimid maintenance (at 5 mg daily) will be better than starting the drug again when I begin to relapse. Patients are handled both ways by leading CLL centers, and this seems to have a lot to do with the guesswork of doctors and the drug tolerance of patients.
In my case, given my proclivity for clot-related problems, there is potentially some value in the “rest” theory. As you may recall, the blood thinner warfarin (Coumadin) was added to my regimen following a TIA, or transient ischemic attack. This started at 2 mg daily. It was increased to 4 mg three days a week, 2 mg four days a week as my PT/INR tests continued to show that I was clotting quickly, like someone who was not on the drug. Even at the higher dose there’s been no improvement in clotting time. Apparently I have a somewhat supernatural ability to clot, which is not useful when taking Revlimid.
I went off Revlimid at a high point. My latest CBC confirms improvement in hemoglobin and platelets that I first reported in my post of February 20. My lymph nodes have reduced nicely; I have lost five pounds since going off the drug and the nodes have gotten smaller. I’m sure that’s not all lymph node weight I’m losing. But I do think it again proves my theory that when on the drug I am in a constant state of tumor flare; off the drug, the nodes reduce to baseline.
I’m not sure they’re at baseline yet. What I can say is that they are definitely improved over a year ago. Without a CT scan I can’t put a number on it. But the nodes I can feel in my neck and under my arms are significantly smaller and a large mass under my right arm has broken up. My abdomen is noticeably slimmer. If I were forced to guess, I'd say the reduction has been up to 50% in some areas, and I'm a very nodey guy.
* * *
After I was diagnosed in 2003, I participated in online discussions about whether chronic lymphocytic leukemia could someday be controlled as a chronic disease, much as diabetes is. It seemed like a pleasant fantasy at the time. What, we wondered, if there was a pill we could take to keep the disease in check?
Today, this might be closer than we could have imagined. Might Revlimid be it? Might CAL-101?
And to what extent will we have to take our chances with Mr. Klopman?
Only time and trial will tell.
I've go to admit it's getting better: More good news about my CLL (chronic lymphocytic leukemia) - Most of my blog posts can be followed here. The full story of my CAR-T therapy, the incredible rollercoaster and the amazing results can be found there I...
4 weeks ago