Well, the results are in from the R+CVP, which became R+CP after my fingers started to tingle and my vision started to blur . . .
The overriding goal of stopping the severe hemolysis, which in October had taken me on a trip that was a little too close to death’s door for comfort, was accomplished. As readers will recall, this hemolysis, or destruction of red blood cells, was caused by autoimmune hemolytic anemia, or AIHA. That condition is a result of my immune system having deteriorated into some kind of Keystone Cops routine thanks to all those CLL cells sending out silly messages.
My hemoglobin recovered from 6.7 to around 12, where it has stayed for the past six weeks. Hematocrit is in the mid-30s. Overall red blood count is in the 3.5 range. While none of these qualify as a return to normal, they do represent enough of a rebound that I feel pretty energetic. My body seems to have adapted to this “new normal” in my red counts, rendering me as active as I used to be, more or less. (It’s not like I ran marathons.) Now, if I were suddenly to find myself in the normal range, I’d probably feel that much more energy, but at this point it could be said that I don’t know what I’m missing. And given how bad things had gotten -- imagine being unable to bend over to put a dish in the dishwasher -- things are “normal” now by comparison.
The other pretty big success in the treatment was the reduction of lymph nodes. The swelling in my neck and under my arms is, quite simply, gone. My spleen is so petite that, if it were not for something of a pot belly and a little gender issue, I could compete in the Miss America contest. The only holdout nodes I detect are in the abdominal area, which are often the hardest to get rid of, especially in an 11q-deleted patient like me. However, even the mass of nodes on my left side (the “abominable lymph node”) is well reduced, not too noticeable, and no longer painful.
On the downside, two things didn’t work as well as I’d hoped:
One, the absolute lymphocyte count bottomed out in the low 20s, which means that I have a good number of CLL cells resistant to Rituxan and cyclophosphamide. (And god knows what else, but I’d prefer not to think about it.) Fortunately, the count has been stable for the past couple of months.
Two, I never converted to Coombs negativity, which was my not-so-secret desire in all this. Such a conversion would presage a longer remission from the AIHA. However, as Dr. Clive Zent of the Mayo Clinic pointed out to me, the goal of treatment is to control the hemolysis and not subject the patient to any more chemo toxicity than necessary. My hem/onc felt that after three cycles of R+C(V)P, we had accomplished that basic goal and were showing no signs of improving on things any further. I agreed, and that regimen will be held in reserve if I should begin another severe relapse.
It is living with that possibility that qualifies as the newest “new normal” that I have to adapt to. As Dr. Zent also pointed out, patients with AIHA seldom get rid of it. There is nothing I’d rather be rid of more, of course. Wrapping my head around the idea that it could return after such a “big” treatment is taking some doing. But experience teaches, and having a hem/onc who recognizes the severity of the problem also helps. So I am doubly vigilant, and that much more prepared, at any sign of trouble. (The monthly CBC has now become bi-weekly, for example.)
For now, I am continuing on steroids, currently at 12 mg of methylprednisolone daily, with the goal to go even lower. We will add in some periodic low-dose Rituxan, based on my experience with it last spring, in which it was able to control hemolysis when I was off the steroids. IVIg, another anti-hemolysis tool, will also be in the works as my Immunoglobulin G has now fallen below 300 for the first time. I am amazed that I have not come down with an infection, but perhaps I have more reserve immunity than the numbers would indicate. And we have been careful. Marilyn caught a bad cold and wore a surgical mask around the house while she had it, and she washed her hands constantly. Alas, no smooching, and I owe her a big one for taking such pains to keep me from getting sick. (Of course, we patients owe our caregivers not just a kiss but the world.)
As to the tingling fingers (peripheral neuropathy), they are slowly returning to normal. The blurred vision resolved after a few weeks. All this means I can use vincristine again in the future, albeit in very small doses. Had I been able to tolerate it better, it is possible I would have gotten a deeper and better remission, but those are the breaks in chemoland.
In the meantime, since I am in remission, I am trying to enjoy that aspect of it. The “new normal” has its rewards. This is a comparative “rest period” as opposed to the manic “what do we do/time to see another doctor/yes, I have good veins and you can use any one you want” period that accompanied my AIHA backslide in October.
Ultimately, though, my continuing AIHA saga, not to mention the rock-bottom immunoglobulins, illustrates that my immune system is pretty much shot. A stem cell transplant is becoming all the more necessary, and the time frame for it is no longer “some day” but more likely within the next two to three years. Investigating that course is now front and center in my ongoing CLL education.
As Roseanne Rosannadanna said, “It’s always something.”
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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