Tuesday, April 26, 2011

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.

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Anonymous Anonymous said...

All good news except for the Kings!Best wishes, Alison.

May 4, 2011 at 7:13 AM  
Anonymous Anonymous said...

Congrats to you Brian on how well you've managed your CLL. I too believe that the cyslosporin has impacted my CLL. After living with higher than normal doubling times, I was introduced to cyclosporin thanks to an acute bout of AIHA. Since my initial tx with Ritux and HDMP, now a year later with small daily doses of cyclosporin, CLL is suspiciously quiet.
I too believe there quit possibly is an anti luekemic quality to cyclosporin for some and one can only wonder how it could possibly help many if given early in the disease process. Could watch and wait time be doubled or dramatically extended with small daily doses of cyclosporin? Makes sense doesn't it. Taking a drug that is known to slow down/disable the immune system which is basically the cellular origin of CLL. that's over simplification but accurate as I see it.
It would be a worthy trial, similar to the trial we (mostly Chaya) helped make happen with the green tea trial done at Mayo. Chaya and PC really did pioneer what I consider an ideal model for Cance radvocacy group a few years ago when PC was still alive. Understandably, Chaya has stepped back from all the work needed to help make such trials happen. she has accurately pointed out that now it is our skin in the game. However, the example was set and I for one would love to see leadership that helps bring to light and the financing needed to see such trials.
Chaya and PC showed that such trials can happen. there is support out there in our comunity. Wonder what your thoughts are Brian in this regard.
As far as the sniper goes.......You are right to suggest such and to include such conversation in your blog. I know of nothing more exciting than NHL payoffs and 0-3 overtime sudden death was truly some bad luck. Just keep your hands off Thorton, Healy, and Maurlow. those snipers belong to Northern California and I consider a Northern Cal state treasure. Go Sharks!! Better luck next year.
My Family will be in Anahiem this next week. Let us know if we can invite you to dinner over a hockey game. You're probably not ready yet, but play off hockey is pretty incredible, even if not your own team.
Our best,
Leo and Family

May 4, 2011 at 1:27 PM  

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