The line is drawn, the die it is cast

Let's talk CLL. A bit technical again and a revisit to some prior tropes, but it helps me rethink the road ahead.

While in Washington, Dr Kipps' nurse was kind enough to email a PDF of my bone marrow biopsy report that was full of good news. Today Dr. Kipps called to review the findings and help map out our next move.

To start, the biopsy showed nearly normal cellularity of my marrow in all three lines of cells, so despite more than five years of CLL, and a transplant, my marrow that should be full to the 41% line is full to 39%. In other words 39% of the marrow is busy making blood. Pretty good. Plus the precursors for platelets are in the right numbers; not too many (that would suggest increased destruction), and not too few (that would suggest decreased production).

The biopsy also showed the CLL to be in the nodular form, which carries a better prognosis than a diffuse interstitial pattern. The down side is that nodules may not yield their cancer cells to the aspirate, so the flow cytometry that showed 3% cancer is probably a slight underestimate. The more accurate biopsy showed 5-10% CLL.

The fact that I am CD38 negative and there is no 11 q deletion or other FISH abnormality, while good news, is likely a function of the low number of cells that are being screened and doesn't mean much.

So do my doctors agree on where to from here?

There are surprising united on at least my next step, but after that, they diverge. Still, that is more than I expected. The future is hardly certain.

Dr. Kipps is the most reserved about more rituximab now. Drs. Forman and Sharma are ready to push ahead. Kipps is more ambivalent, but ultimately said and I paraphrase, why not give it a shot. While he admits it may shrink my nodes, he does not think it will get me to MRD negative in the marrow. That is not rituximab's strong suit, but with the cyclosporin, anything is possible. R seems to make everything work better. It is the ultimate helper drug. And there is little down side. Some immune suppression, but it is easy on the marrow, and resistance seems to be not much of an issue.

So I plan to start on more Rituxan in a week or so after I return from a 1/2 day visit to Atlantic City to lecture. I am pushing for the slightly higher dose used in the German study of 500 mg/M2 x 6 weeks. The more R, the better the response!

I will continue on my cyclosporine and my IVIG.

Three months after the last dose, it will be time to bite my nails and re-stage with a repeat bone marrow biopsy and CT scan.

If I am CR, MRD negative then, probably sometime in March 2011, I can expect a long glide, a long time until I will need more treatment. If my nodes are shrunk to less than two centimeters, maybe that's the time and place for a Campath chaser to clean up the marrow if it is not already MRD negative. Kipps likes that idea, but I have my doubts due to the infection issues. If I can achieve MRD negativity, the infection risk seems to be less. Maybe any detectable residual CLL screws up the immunity even more.

If my nodes are still up then campath is out (it is lousy with any node > 2 cm), so maybe FCR or PCR a trial or lenalidamide or who knows.

Then nail biting and re-staging again.

If I am not pretty much disease free, we try something else.

Then a second transplant when I am in a deep deep remission. Excellent survival odds and a better than 50/50 shot at a cure.

That's the big picture today. It is feeling more solid, more real, but there are still way too many turns in the road to expect to not have to reroute my path to that cure a few more times.

Still I feel confident of my ultimate success.

One step at a time.