It’s been about nine weeks since I started lenalidomide, aka Revlimid. With nearly ten months to go in the protocol, it’s still hard to point to any significant progress.
As you may recall, the initial dose of 10 mg daily led to severe tumor flare and was cut back to 5 mg within the first week. This lower dose was accompanied by a reduction of drug-induced fatigue, as well as a reversal of the tumor flare.
After about a month, my oncologist decided it was time to work our way back up to ten again. For a few weeks I did 10 mg every third day –- 5 mg, 5 mg, 10 mg, 5 mg, 5 mg, 10 mg -– and so on. That proved tolerable, so I am now on 10 mg every other day.
This has been accompanied by the return of noticeable fatigue on the day following the 10 mg dose. Yesterday I was about as zonked as I get. It’s not a sick or fluish feeling, more like a spaced-out, moving-through-Jello, can’t-deal-with-anything-complicated kind of thing. I got a full night’s sleep –- that’s one thing you can count on with Revlimid –- but also required two naps during the day. Prior to Revlimid, I always used to wake up refreshed from a nap. Now I usually wake up almost as tired as I did before I started.
My reaction of late to 10 mg has not always been so severe; perhaps the drug is beginning to build up in my body. So it will be interesting to see how my tolerance to it develops. The plan is, of course, to go back to 10 mg daily as soon as I can stand it.
Besides the Revlimid I am getting monthly infusions of ofatumumab, aka Arzerra. I haven’t had any infusion reactions, nor any dramatic results.
My CBCs do show progress. Absolute lymphocyte count has dropped from around 12k to a just-above-normal 5k. Platelets are holding steady at low normal, neutrophils remain strong, and the hemoglobin, hematocrit, and overall red count have improved and now sit at low normal as well. I’m pretty sure my autoimmune hemolytic anemia will stay in its box as long as I’m on this protocol.
But the real battle is in the lymph nodes, where most of my disease resides, and where it's hard to know what's happening, other than "not much so far." During my 5 mg month the nodes seemed to be getting just a tad better -– a little softer and spongier in the neck, for example. I've lost a few pounds, so my abdomen looks a little less distended, but it's a leap of faith to say that I lost abdominal lymph node weight.
I think it's accurate to say that the nodes show no truly measurable improvement since I started all this nine weeks ago. How much is drug resistance, how much is the propensity of Revlimid to cause even mild tumor flare, it’s hard to say. The other factor is that it could be too early for noticeable improvement; many patients report that it takes several months to see progress, and one study showed that it took patients a median time of about six months to show best results. The sooner I can get back to 10 mg daily, the sooner things may start looking better.
So a lot of this is a waiting game, accompanied by intermittent bouts of fatigue. For those of us used to seeing rather immediate results from traditional chemo, it’s also a lesson in patience.
The only thing I can safely conclude so far is that the protocol has brought me stable disease. The nodes are not really improving but they’re not getting worse. The AIHA is under control. My red counts have improved, though this potential added energy is offset by Revlimid fatigue. Only time will tell whether I get from stable disease to partial remission.
CLL Society, LLS and the Cleveland Clinic Present a Free Patient and Caregiver Educational Forum on Nov. 11 on Chronic Lymphocytic Leukemia - The CLL Society, LLS and the Cleveland Clinic are hosting a Patient and Caregiver Forum on Nov. 11. It is going to be a super educational experience with C...
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