The results are in. After five cycles of bendamustine (Treanda) and rituximab, which ended in mid-November, I can report that the treatment worked better than I expected.
As you may recall, I entered into it last July feeling a little desperate. My marrow was 90% impacted with CLL, my hemoglobin had dropped into the 7s, my platelets were dipping below 100, and thanks to swollen lymph nodes my abdomen looked like it was ready to give birth to three or four alien babies. You know, the big, ugly Sigourney-Weaver-attacking kind.
When chemo began I did not know what to expect. I knew a CR (complete response) was out of the question. I just hoped I wouldn't get a HAR (half-assed response), one so ultimately poor and useless that it would render all the time, pain, and money not worth it. Especially in someone as heavily pretreated as myself, that kind of response was entirely possible. The disease tends to become more refractory to treatment as time goes on; you don't want a big, ugly failure to confirm your worst fears.
Well, I've now had a follow-up bone marrow biopsy and CT scan. And the bone marrow result was one I did not expect: a CR in the bone marrow, courtesy of a 5-color flow cytometry.
The CLL clones are there, just in numbers too few to analyze. The flow cytometry reveals "no specific diagnostic abnormality." Susupicious B cells comprise "approximately 0.1% of the total cellularity," or "too few to accurately assess clonality."
I have to admit that I just about fell out of my chair upon hearing the news. I was hoping, at best, for maybe 20% CLL in the marrow, a significant reduction, to be sure. But not one that pushes my CLL back to pre-diagnosis levels.
The CT scan of chest, abdomen and pelvis came out about as well as I might have hoped, but with less stellar results: Numerous swollen nodes are still there, especially in the retroperitoneum of the abdomen. The largest node is 6 x 4 cm, or about 2.4 x 1.6 inches. There are two others about that size, as well as numerous smaller ones.
What I am grateful for is that no huge cluster or mass of nodes was found; one can only wonder how bad things must have been at the start of chemo.
The spleen was also enlarged, 10 x 6 x 17 cm.
An added bonus on the CT was what wasn't found: "The liver, spleen, gallbladder, pancreas, adrenal glands, and kidneys are unremarkable. . . . Lungs are clear." In other words, no new wrinkles to challenge me on top of the CLL.
Four months after therapy my peripheral blood continues to look good, with an absolute lympohoctye count of 0.8, hemoglobin of 12.3, and platelets at 153.
Like Caesar's Gaul, CLL is divided into three parts: the marrow, the peripheral blood, and the nodes. It appears that chemo pretty much flushed it out of the first two. It remains a problem and a challenge in the nodes and spleen, which is what I would have expected given my history. And my B2M remains high at 5.1, which indicates the disease won't be staying out of those other two compartments forever.
So now, the challenge is maintaining -- or building upon -- the remission I have. I had a good visit with Dr. Thomas Kipps in San Diego in January. More on that in my next post, as well as some thoughts as to where to go from here.
But the headline is that the chemo was worth it and that the disease has been dealt a significant blow.
Facebook Live on Genetic Testing in CLL this Sunday, Dec. 4th at 10:30 AM Pacific Time at https://www.facebook.com/CLLsociety/ - I am very grateful and a little nervous to not only be presenting our original research (Factors That Influence Patient Treatment Decision Making in the...
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