This is mostly a medical post, so those who aren't CLL or transplant aficionados might want to skim it quickly or skip to the last few paragraphs.
As you know from my spotty posting, my status has been delightfully boring with little new to report.
To understand what I am planning to do, it is important to see it for what it is: more of the same.
Let's go back to last spring when I started down this very smooth path.
Allow me to briefly summarize my journey over the last 12 months.
Almost two years post transplant, my platelets had fallen again, this time over four weeks from 242,000 to 32,000 in May 2010 despite low dose IVIG infusions (30 grams) twice a month.
With the platelet crash I was re-staged to be sure it was ITP.
My CT scan showed the largest cluster of nodes was way too big: 6.4 x 3.4 cm. on the right side of my mesentery. The flow cytometry showed CLL was back in my peripheral blood again. My ALC was normal but my atypical lymph count had reached 12%. Red cells were fine and I could feel some small palpable nodes in my neck, but nothing worrisome.
So besides the ITP, it was all too clear that the CLL was stealthily but forcefully on the move again.
That's when it was decided to go back to what had worked so well before my transplant, the unusual but magic mix of ciclosporin (CSP) 150 mg twice a day and some heavy cycles of rituximab (R) at 500/M2 weekly x 6. And continue the IVIG unchanged.
It worked quickly. My platelets jumped up immediately and were soon a non-issue again.
As of now, my ITP as measured by my platelet count seems to be stable or even trending upward with numbers often well above the amazing level of 400,000, and never below 270,000 for almost a year now. The therapy is working great for ITP!
After the first cycle of rituximab, my follow up CT scan in September 2010 showed my largest node was 3.8 x 1.7 cm, still much too big, but also much better. My ALC was low to low-normal ranging from 0.52 to 0.79, likely from the R wiping out all my B cells. My bone marrow showed about 5-10% CLL on the biopsy and 3% by flow cytometry.
Not just my ITP, but my CLL was responding to this non-chemo therapy as it had done before.
So I did a second round of 6 weekly doses of rituximab starting in October and finishing late in November. During this time, I also had to reduce the CSP because of its well known nasty side effects when my uric acid jumped to 9.4 (really should be less than 6 but we can accept as high as 8) and when my blood pressure shot up. Thankfully renal function (creatinine and eGFR) stayed in the normal range this time, unlike my last CSP scare.
I eventually readjusted my BP meds and halved the CSP to 75 mg twice a day, which is my present dose. Uric acid is fine again, creatinine has climbed a touch but is still normal, and my BP is great to high normal. It depends on who is checking it. It is always great at my office and alway borderline at the cancer center.
Not a perfect portrait, but not bad. I can't imagine what these renal parameters would be if I wasn't vegan. I do believe my anti-inflammatory diet moderates some of the toxicity of my disease and its treatments.
My ALC is now up to normal ranging from 0.7 to 1.2.
My Hgb has dipped as low as 12.7 but last week was a robust 15. It fluctuates between a bit low and low normal. My red cells are always slightly too big or macrocytic, but it is not progressive.
The few tiny nodes that never went away in my neck after the first round of R therapy didn't change much with the second hit of monoclonal antibody, but they were tiny.
The bone marrow biopsy on March 30 showed 3% CLL on flow, and < 5% on the biopsy. Even better than 6 months earlier. It also showed some mild hypocellularity (30%), which means it may have been beaten up more than I realize with the transplant. FISH studies for the usual suspects for MDS and CLL were negative. All in all a very good result.
The next important piece of the puzzle is the imaging.
Here there is a new wrinkle in the strategy. I am switching to MR. My hospital has just installed a new more powerful machine, and although the details won't be as precise as on a CT, it will be good enough for a new baseline. Truth is that I don't need to know if my nodes are 1.9 or 2.2 cm but I do need to know if they are 2 or 4 cm. All future imaging will be on this same machine, and hopefully this will eliminate the Morton's fork of too much radiation or not enough information. The scan will be in mid June.
What I do know is that my palpable nodes are definitely growing very slowly. Kipps agrees. Is it because of the reduction of the CSP as the nodes seemed to enlarge after the last drop in dosage, or is that the R finally wearing off (it has been 6 months since the last infusion), or is it just what it is.
Unless the MR finds the bad or good extreme of either massive nodes or no nodes, I will be doing 6 weeks of R again in late June through early August. 6-12 weeks later I will repeat the MR.
During this time I will continue on the same dose of CSP and then try to stretch out the IVIG to three weeks between treatments which will also spare my veins, which are getting a little inflamed from years of abuse by the IV nurses.
I hope to make only one change at a time so I can monitor the effect.
After that, I will try to reduce the CSP to 50 mg twice a day, but I am nervous about going lower than that. Rai is not keen on my stopping the ciclosporin, ever.
After that more R again in 6 months and another BMB and MR scan somewhere in there, depending on how things go this summer.
If this is smelling a lot like rituximab maintenance with the every six month dosing, it might be.
But I believe it is more than that because clearly the CSP has anti-leukemic properties proven in the test tube and a few published cases and at least twice in this little body of mine. It is a novel low toxicity combination therapy that probably should be better studied.
I believe this approach is using CSP and R to treat to goal, to shrink those mesenteric nodes.