More good news in the marrow and the worst news on the ice

The Kings lost their 3rd game in OT, and are out of the playoffs again in the 1st round. They need a sniper, someone who can score. So sad.

I need a sniper too, something that can pick off my CLL clones and leave the rest of my body alone.

I may have a fair facsimile in my idiosyncratic mix of ciclosporin (CSP) and rituximab (R).

Dr. Kipps was very very very happy with my bone marrow report. His and my fears that the R was doing a good cosmetic job of cleaning up my blood and shrinking the nodes you could feel, while the marrow was loading up with cancer was not the case. In fact my marrow had less CLL than 3 months ago 3% by flow, and < 5% seen with special stains. The histology (the slide itself) looked normal to the hematopathologist.

That means no nodules of CLL like cells seen. And no excess blasts or increased marrow activity that might herald the dreaded MDS (See my friend's CarePage as he details his life saving transplant at MDACC for his CLL/MDS combo). (Update 8/2013: He is now long post transplant, disease-free, and doing great with a long cancer free life ahead of him.)

The cells lines for read and white and platelets were all just fine. The marrow's cellularity was a bit low, which Kipps think is from all the therapy I have had.

I guess I don't think of myself as having had that much therapy, if you don't count my transplant. (That's a joke.)

Anyway he is not worried and actually relieved that the marrow wasn't hypercellular like it usually is in MDS.

Also all my FISH studies for the common genetic irregularities associated with CLL and MDS were negative.

All this is old news.

The new news is that Kipps feel the ciclosporin is a big part of my success. He actually tried to get a study done on its efficacy in CLL. Apparently it doesn't help everyone and it is a generic drug, so funding would be tough.

But for me it works.

I think of it as the brakes on my ITP, but Kipps is reminding me of its antileukemic especially in combination with R.

The only bad news is my nodes have groin a bit again. All this has happened since I reduced the CSP.

Which also suggests it helps my CLL

So if I can find a dose that doesn't mess with my kidneys and still controls the CLL and the ITP, I may have the 1st piece of a winning strategy.

The second is also atypical: Maintenance Rituximab

I am going to wait for MR (more on that in the next post) before adding the R it has only been 4 months since my last dose, so my slowly growing nodes could be from the R starting to lose gas or from the reduced dose of the CSP or from both or neither.

I don't want my gut nodes to get gigantic and hard to treat, so I am thinking a course of "vitamin R" in June might be just what the doctor ordered. Kipps wouldn't say go for it, but he didn't say no either. Which is a lot for him considering this R+CSP is all unproven territory for a man who has built a world class reputation for elegantly clinical designed trials.

So all in all good news.

Watch the nodes with self examines in the shower, and a MR soon. BMB every 6-12 months.

Titrate to find the lowest dose of CSP that keeps things under control and add in some R every 6 months.

And the LA Kings sign a free agent snipe in July.

We have a plan.

Weird Tests: Low ciclosporin and Lowish Copper

A couple of my weirder tests have come back. They take longer to do, as they are not part of the normal blood panels.

My results showed that my reduced intake of ciclosporin has resulted in lower blood levels.

DUH

Rai says he is not concerned with ciclosporin blood levels. Forman says as long as the platelets hold up, not to worry. I can continue to reduce my dose all the way down from 150 twice a day to 50 mg twice a day, but not lower. And a full month pause between each step down with monitoring my lab. The lower levels help reduce my blood pressure and take the stain off my kidneys. Also less climb in uric acid and less immune suppression. All good stuff.

My copper level is at the very low end of normal. That is because I take zinc daily, which is supposed to help with cancer, but can drastically lower copper in the blood. Low copper is an exceedingly rare cause of the kind of anemia I have had, so I checked.

It's low, but not the kind of drastic low levels needed to cause me any problem.

So my mild anemia is probably from my beaten up marrow underproducing. More on that later.

The rest of my blood counts and chemistries are pretty much normal so I am a happy guy.

Right now I am in my NOT WORRY MODE.