What to do, again? The same set of questions

Time to focus and bring my A game to the table. No more wishful thinking and pushing the tough issues aside. Lines are being drawn, and I better be aware of where I stand and what I must do.

It is always the same set of questions I must ask when staging my disease. Questions about when to keep my foot on the gas, when to brake, and when to change vehicles.

It helps me frame my plans if I lay them out here. This post will be of more interest to my CLL friends, as it is rather technical, though it does detail how I deconstruct my problems. And I always seem to get to the "big question" by the end.

In the next few days I will get my first CT scan in over a year and my latest of my many bone marrow biopsy, the last being in February.

Since that time I have had a reoccurrence of my ITP, controlled easily at first with just IVIG and nothing else for almost 10 months until June this year when my platelet count crashed again. Cyclosporin (CSP) and Rituximab (R) in about a week rescued my platelets from the 20,000s to the 300,000s.

Not surprisingly, my CLL was raising its ugly head at the same moment with the leukemic clone showing up for the first time in almost two years, the first time since my transplant. Not a welcomed repeat visitor to my blood stream. My palpable nodes were also slowly growing. The cancer was definitely back and on the march.

Today I am still on the same dose of cyclosporin (150 mg 2 x a day) that has raised my BP, made my muscles ache, and slightly challenged my renal function, but is doing its job. Last platelet count was 291,000.

I had rituximab 375/M2 six times between June 2 and July 8. My absolute lymphocytes that had risen just beyond the normal level to 4.8 when the flow cytometry showed my cancer before the R , quickly fell to 0.8 and my palpable nodes shrank to 1 cm at the most and have stabilized there.

It is now more than two months since my last rituximab, so it is time to check the marrow. R when it is effective, is still working its magic for at least two months after its last dose so I need to wait to assess its success.

Assess what? If I need more rituximab? If I should consider other therapy?

Here's how I see it.

If there is no evidence of disease, in other words, the marrow is no longer 5-10% CLL as it was seven months ago, but has become MRD neg, and more importantly the largest mesenteric cluster of nodes that was 3 cm a year ago and all its CLL friends have shrunk to less that 1 cm.

The odds of that are small, but not impossible. The last time I had my idiosyncratic CSP and R mixture my marrow went from 90% infiltrated to 3%, and my palpable nodes all shrank to nothing. Unfortunately I did not have a CT scan to measure the disease until months after my last R then and by the time I did, it revealed a 5 cm mesenteric node. Had it shrunk from much bigger to that size? Maybe. More likely it had both shrunk and re-grown. But how much and how fast? This time I am starting with a much lower disease burden, less work for the drugs, but has my CLL toughened up in the two years since my last encounter? R on its own is wimpy, but the CSP seems to add extra oomph in my case, especially in the marrow.

This is the result that I am hoping for. Praying for.

Another reason for no more R soon would be the other extreme. Many big mesenteric nodes well over 5 cm and/or heavy marrow involvement, say >70%. R on its own is not that great in cleaning out big nodes or the marrow. CSP has little track record and even less clinical data as a CLL drug.

I am not going there in my mind or heart, but that unlikely finding would mean time to move on to bigger guns and tougher questions. What to do when the R and CSP are losing their mojo? Likely Revlimid and Ofatuzamb, maybe FCR. That all means transplant redux in a year or so, but more about that later, G-d willing much much later.

Almost any finding in between those extremes, MRD neg. versus big tumor burden would seem to suggest more treatment with R. Not rituxan maintenance, another of my controversial trailblazing path, but more actual standard treatment. The distinction is not just a nicety for insurance reasons, but a considered plan to push back the CLL as far as possible.

My friend Chaya says I need to stop worrying about my ITP and pay attention to my CLL, especially the size of the mesenteric nodes. (I asked to have the CT of only the abdomen as that halves the radiation exposure and it is the mesenteric nodes that have always been where I have the worst disease.) Let's examine what Chaya calls my opportunity cost. If my nodes are too big, then waiting or fussing around with more R makes little sense and might actually be ill advised. Because if they get too big, getting them down to size will be very difficult with fewer option. Getting them down to size will always be crucial in insuring the success of my next transplant.

I face the identical questions about node size that I did a over two years ago. Say my nodes are the same or a touch bigger than a year ago. Surely they were even bigger before I started CSP + R in June. After all, my palpable nodes shrunk so my gut nodes must have followed suit. Yet I had no palpable nodes and a hidden 5 cm mesenteric node pre-transplant, so there is no tight guarantee. Never is.

I will have the CT scan next Friday with my own medical group in Fullerton so I'll have my results within minutes, all this just a few hours before the call of Kol Nidre. The bone marrow biopsy is a week from Tuesday with Dr Kipps at UCSD, so results will only be available some three weeks later. Waiting, again, one of my weakness.

Truth be told, the big drama is next Friday.

Will I be sealed in the book of life?

I am asking this same question for the fifth time since my diagnosis. I am thrilled and grateful to be here and able to pose it.

I plan to be asking it for decades to come.