Tuesday, December 1, 2009

Tough Stuff Part 2

This is another post best reserved for those up to their eyebrows in the intricacies of CLL.

You might want to skip it if you are not on a similar journey (and you should have skipped all but the first few paragraphs of the last post), as I plow through my decisions. Or you might enjoy following my tortured logic.

My friend and fellow CLL voyageur, Wanda, counseled that the CLL will make the next call. It will jump out of the bushes when it's good and ready and I shouldn't be wasting precious ammo when it is still a distant and mostly hidden threat.

Maybe she's right, or maybe I need to slaughter the beast while it is still a relatively docile pup, though I would never call it cute or lovable (sorry, Nancy, I remain staunchly unconvinced of my need to love my wayward cancer cells). And I think while it is outwardly unobtrusive, it may be growing in my gut unnoticed. 11q del has that propensity and that history in this poor boy's belly. That is after all, where it made its comeback after the transplant.

Moreover, I would hardly call it tame what it has done by hijacking my immune system and wiping out my platelets. I would call it downright dangerous and underhanded.

And so the problem is summed up, like so many before, by a song. This one is by the Eagles, Hotel California: They stab it with their steely knives but they just can't kill the beast.

Enough with this anthropomorphic portraiture. I wandered into the Holy Temple of decision, looking for answers. I didn't want to bring back animal sacrifice.

Where I left this discussion in the last post was the argument in favor of holding off on the bazookas of FRC and its friends and staying with gentler giants like HDMP+R that play nicely or at least more predictably with others.

The plan would be to buy a reprieve with a pretty cheap down payment, and hope that one of my ships (a SYK inhibitor or CAL 101 or a SNIP or Revlimid or a vaccine or something, anything) comes home and if not capable of curing the CLL, finds a way to keep it under control long term. The story line is meant to read like the Gleevec miracle in CML.

I so hope this happens, but honestly can I handicap the winner, assuming that there is even a winner in the pack?

No, this is a bet on an uncertain future, betting on what I hope for, not on what is. None of these new kids will be on the street anytime soon, so I would be guessing which trial to join.

But maybe I could simply buy the time say a few years with HDMP+R, and then do it again and then again. Or something different.

Maybe I could, but unless one of those above Yankee Clipper ships comes home, I will have almost certainly have played out my hand, let's be very optimistic, in the next dozen years, more realistically much much sooner.

Maybe then I could pull the transplant trigger. Maybe I still could, but I know the most critical predictors of success with transplant.

#1 The less disease at the time of transplant, the less chance of relapse.

#2 The sicker you are at time of transplant (heart, lung, kidney, infections), the higher the mortality.

#3 The better the match, the better the outcome.

The odds of those 3 being better in the distant future than they are in the near future goes against common sense.

So if I want to make it to 70 and beyond, and here I am screaming that I do, I gotta give up something and take my chances.

What that means to me is knocking down the CLL until it is nowhere to be found, then without missing a beat, jumping to a second transplant.

The devilish details could look like this.

Pentostatin and bendamustine don't mess with the T-regs and CD 200+ lymphocytes, at least in the test tube, and those are two important populations for self tolerance, something we all need, especially if we are homely platelets that seem to have target painted on their back.

So I am thinking PCR, which, despite a recent flawed study to the contrary, I believe to be kinder than FCR.

Real chemo, unlike the namdy-pamdy CsA (cyclosporine A) and R that I had last time, would also have the important advantage of softening me up before the transplant, knocking down my T cells so rejection of the graft is less likely. Not sure if P would work as well as F at that.

Then it's time for my new immune system again. More choices.

Dr. Miklos out of Stanford is doing some exciting things with conditioning including ATG and total lymphocyte irradiation (TLI), that I don't pretend to understand, but what it does is change the population of lymphocytes so that the incidence of GVHD is much lower, an incredible 0% incidence of NRM (non relapse mortality or the odds that you will die from the procedure that is trying to cure you), and a progression free survival rate at 2 years of 73%. WOW.

That is better than antibody's numbers I have seen, but it is still "experimental" and unpublished and the N is only 22. Tiny numbers.

City of Hope and Dr. Furman on the other hand know me, and will make sure, for sure, that I will engraft a second time around. And they are local, which is so important. Not crazy about a BuFlu conditioning as it mainly focuses on the marrow, and doesn't do much to the nodes, the source of all my problems. Not sure that matters, because the plan is that the prior chemo will knock down the nodes to a manageable size and what cancer is left in them will be easily wiped out by the GVL.

The details: FCR or PCR to tame the ITP and the CLL, the conditioning, TLI and ATG at Stanford or possibly BuFlu at CoH are not clear, but I am pretty set on taking the high risk path.

Lots of ducks to get in line. And the bone marrow biopsy.

My inclination again, identical to how I started this blog a year and a half ago, is to move my risk up front and by doing so reduce it. Is it my Yatzer Hara (evil inclination) speaking? I don't think so, but I do admit that I want to get this over with it. CLL is too big a chunk of my life. I am not a patient patient.

But it more than my impatience driving my risky behavior.

There is much that bodes well for moving quickly.

My wonderful donor is ready, willing and able.

I am well with no co-morbidities.

My medical insurance will probably cover it (hardly a sure thing in the future with the changes in health care and the need to save big bucks to cover all the exploding expenses- transplants are the pricey low hanging fruit, very tempting to limit to one per customer).

But the main point is that as of today, and as of the foreseeable future, nothing else offers a chance to see deep into my 70s and beyond.

I have way too much to do and a dozen more years is not nearly enough time. At the rate I am going, it will take me that long to write my book.

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Blogger pkenn said...

How I wish I could hand you an answer to put to rest all of your "brain chatter"! I do know that the new CLL person at UCLA, Dr. Eradat, has been working on getting new trials there. I don't know how successful he's been. I haven't talked to him about it recently. It would certainly be closer if you decide that one of the trials is worth looking at.

December 2, 2009 at 12:40 AM  
Anonymous Anonymous said...

The flaw in your logic path is that you have no way to predict how you will respond to any of the possible choices. My preference would be a) no treatment until it becomes clearer that a problem is eminent (you will be just as fit in a year or two because your co-morbidities are either present, without manifestation, or absent ), b) use the least toxic cocktail consistent with the presentation.
As to PCR, I managed only 4 of the standard 6 cycles because of deep neutopenia (try 100 with no illnesses). If you are serious about this approach, I'd seek a consult at Mayo or Ohio State as they are the experts.

December 2, 2009 at 7:43 AM  
Anonymous Anonymous said...

Any thoughts on this clinical trial:


December 2, 2009 at 11:45 AM  
Anonymous NCD said...

AlloStim-- This is a trial we have just been told about by Michael Broffman (Pine Street Clinic, San Anselmo). He believes this is will be a big step. I too would like to know more about it. Meanwhile, the journey you are on, Brian, is amazing and I am deeply grateful for your sharing the details. . . thank you and please continue. . .

December 2, 2009 at 8:15 PM  
Blogger Brian Koffman said...

To TomD

Thanks for sharing your experience. I agree it is a toxic mix, and I agree it is best to go those with experience in using it. I must weight that against the practicalities of travel and out of state care.

While my CLL is hardly racing out of control, the ITP might already be consider eminent. It certainly need close monitoring and treatment.

Maybe I could get a few good years out of the less toxic R+HDMP. It is worth considering.

Thanks for the challenge.

December 2, 2009 at 9:45 PM  
Blogger Brian Koffman said...

The trial looks very exciting. I wouldn't qualify, but I think the future could like in a transplants sans transplant, the benefits w/o the risks.

December 2, 2009 at 9:47 PM  

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