No push back

Dr. Forman and I reach the same game plan, clearly by different routes and from different starting points, but we have a very similar strategy.

And that is very good, and hardly to be taken for granted. In fact in CLL, it is more often the case the doctors and the informed patients are not in agreement about the treatment options. And is almost a certainty that if you have two CLL doctors, they will not agree with each other.

So here is the rough plan.

First, I must continue the IVIG (intravenous immune globulin) every two weeks which is doing a great job handling my ITP (immune thrombocytopenic purpura), except for the one fright a month ago when for some unknown reason my platelets dipped below 30,000. Dr. Forman points out the obvious, that my ITP is driven by my CLL induced immune dysfunction, which is clearly not related to my tumor load. It is "dose independent", which means, at least theoretically, that while my CLL may progress, my ITP shouldn't become more recalcitrant. The implication is that the IVIG may still have a long and successful run ahead of it.

In early February, I am booked for a BMB (bone marrow biopsy) and abdominal CT scan. Last look see was in August, so it will have been 6 months. Pretty standard fare to stage the disease like that, not that anything in this disease is ever standard and certainly one size fits no-one.

Both Dr. Forman and I are spooked by my ITP. It is the driver of my need for treatment. My CLL is not that threatening. In fact, it is pretty wimpy these days. However my low platelets give me the heebie jeebies. Scare my doctors too. It take away a big chunk of my fun and my freedom. Worse than that, every time I have a blood count it threaten to take my life hostage. Single digit platelets change everything, and not in a good way.

So the CT and BMB are more to set the baseline for the treatment, not as in many others to determine the need for therapy.

That said, and I hope you are listening, Mystery of the Universe, if my bone marrow, G-d willing, turns up as clean as Mormon's liquor cabinet, and my nodes have shrunk to the size of a politician's conscience, I would have to say my clean living vegan raw diet, the Budwig or Zeolite magic, or everyones' most welcomed prayers or the psychic thrusts have finally kicked in, and I will glide a little longer or maybe forever.

If not, and my CLL is still rearing its ugly head, it will be show time, a call for action.

The nature and the exact timing of that next treatment step is not clear. What is clear to both Dr. Forman and myself is that the complete remission I should achieve with immuno-chemotherapy will most certainly be followed with a second more humbling transplant (a midi, not a mini - OUCH).

Like before my first transplant, despite my expectations to the contrary, I got no push back with my aggressive plan of action. Treatment and transplant, like love and marriage are locked together. Going for the cure. No wayward stations on my road to a complete healing.

This coming together of minds, Forman and me, is such a relief, a piece of solid ground is a shifting landscape.

I will seriously address in future posts my various chemo and immunotherapy options to get to that blessed remission, and my critical conditioning regime to avoid the rejection snafu of the last transplant adventure, but I am taking a few days off to care for a dear dear friend who is having a minor surgery for a broken finger.

And even before that I promised myself I would dedicate Dec 24-26 to writing my book.

Believe me, the book is for you, my friends and readers to help you get through the muddle that cancer or any life crisis can make of your reason, your gut, you life.

It will help me too to sort through this all, but the blog is light work, and Facebook is a non-contact event. Forget Twitter.

In fact, Facebook is as easy as slipping on the ice, and often about as graceful. Dashing off a blog post is a gentle slide on your bottom down a bunny snow slope. Fun and worthwhile, but rarely character building. Writing a book is a blindfolded run at a ski jump of Olympic proportions. It is courageous and lonely work. Writing is not a social activity, and I am a social creature.

These three days are critical for me to push my agenda forward. I have so many broad and wild imaginings that I know could help others with their lives in jeopardy, but I need to make my ideas real and accessible and fun.

That means no telephone calls, no emails, no tweets or Facebook updates, and no posts here.

Unless of course there is an emergency or an epiphany (it is the season). I am especially open to the epiphanies.

So Merry Christmas to all my friends who celebrate the special birth of the divine on earth.

And to my other friends, enjoying the return of the sun, and the time off.

See you in a few days

G-d bless.

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.

"Let nobody put a loophole, a loophole in their way" Leonard Cohen

I told you I was curious

I never said that I was brave

So Long Marianne by LEONARD COHEN

I have leukemia and I am planning a first remission haemopoietic stem cell transplant (like a bone marrow transplant) with no history of any cytotoxic chemotherapy. No heavy drugs at all. Only Rituxan, a mouse antibody that targets my good and bad white cells (specifically my B lymphocytes) and cyclosporin A used to suppress the immune system in transplant patients and auto-immune diseases. I am going for the ultimate weapon in the war on cancer when I haven't once used any of the conventional tools of that war (chemotherapy) This is an aggressive and novel path to a cure. But my CLL (chronic lymphocytic leukemia) is knocked way back. Last year was tough. In hospital 5 times for low platelets from ITP (immune thombocytopenic pupura, a disease where I destroy my own platelets and can have uncontrolled internal bleeding). It is not untrue to say I could have died. But now, my blood counts including my formerly disappearing platelets and pesky lymphocytes are back to normal. My serum chemistries and tumor markers are all within normal limits. My nodes which used to be 5-6 cms are all shrunken. My bone marrow which had 90% cancer, now has 3%. And I feel great. But my cancer is not gone. It is in remission, and its most virulent hordes may rise again. I don't know when, maybe never, maybe soon. So like the Amalekites, I will blot out their memory and kill their children's children. And the only way to be certain it stays gone is eternal vigilance. That means a new immune system, because mine is not up to the task. So I am getting my new blood system from my unknown, out of the country, blessed 22 year old male biological twin. A perfect 12 of 12 match, with even my A- blood type. It is very sobering to be doing this when I feel so well. I am trading off an unknown length remission for a chance at cure The numbers are sobering. Without a HSCT (haemopoetic stem cell transplant), my chances of reaching 65 would be very slim. With it, I have at least a 10% chance of dying in the first 100 days, a 30% chance of severe graft versus host disease, both short and very very long term. Double the death rate even 10 years out. Missing half a year of work wouldn't be a surprise. But it gives me a 50-70 % chance at a cure. Most people wait for their HSCT as a "Hail Mary" desperation last move. I am doing it from a very healthy and quite elective position. I haven't even had any real chemo yet. I have other cards I could play, but I have the perfect donor and a deep remission and my good health so I am gambling it all. The stars are lined up. Would you gamble it all? I am so scared but so convinced that is the right thing to do. I have no doubt I should move from strength to strength. If the transplant is safe for me and the donor, I will soon be writing my most original essay on how I spent my summer! But first I will visit family and friends. I have been crazy busy squeezing much fun and travel into the months before my planned stem cell transplant in June. Just back from Prague and Vienna, before that, Seattle and Vancouver... Next, Baltimore, NYC and Toronto. I am so lucky to get to do all this traveling to see my family or just see the world. After the transplant, I will be content with the view out the window for a while. My point is that CLL forces us to face our mortality, and because our time is limited (Me? I expect I've only got another 40 years or so before I move on), it is too precious to waste. The hardest part for me after the transplant will be not practicing medicine for months. It so defines who I am. I am making this last push of teaching and seeing tons of patients as I also must do my own prep for the transplant. For now I am planning a real-time graphic novel about the transplant with my artist son. How cool is that! Please forgive my bravada. It is my way of coping with my real fears. I have no doubts of my ultimate success and no illusions about my trials.
Brian, 56 yr family doc & father of 4, dx 9/05 with CLL del11q, unmutated CD38+ zap70+