Five Years Post "Failed" Hematopoietic Stem Cell Transplant

Granddaughter, Amira at the July 4th Parade

The last half of June and the first week of July are full of red letter days for me.

I had my hematopoietic stem cell transplant on July 1, Canada Day in 2008, a little over five years ago. I remember watching the fireworks on that 4th from the City of Hope hospital window on the 5th floor with my family and my IVs and my N95 mask.

About this time those five years ago, I was near the nadir for my blood counts and feeling about as healthy as a sticky asphalt road in Death Valley in a scalding August, with a convoy of overloaded 18 wheelers doing wheelies on my soft shoulder.

I ended up recovering quickly, but I never engrafted, and soon lost everything: the graft, my short lived MRD negative complete remission and any clarity that I ever had on what to do next.

My aggressive plan to deliver an early (first remission) knock-out punch to my CLL never even got cocked and ready.

But then again, it didn't knock me out either as it has done to so many others before. PC Venkat, my friend and the pioneering model for my shock and awe approach to CLL, passed away the day before I was admitted to City of Hope. That terrible news was both sad and sobering, but I went ahead with my plan to assault the same beachhead where he had fallen.

In hospital, I pushed to get ATG as part of my conditioning to cool my own immune system that never had been damaged by chemo or Campath. I failed and without it, my T cells at transplant time were still on active border patrol and as it turned out, more than up to the task of booting out the invading donor cells from my marrow. Later I pushed for more radical reinforcements, namely DLIs, but was told it would be too little too late. Either I should have a meaner and riskier second transplant, or.... Who knew.

Within six months, I had nearly simultaneously lost the graft and relapsed. Six months after that the ITP was back.

Not a good time.

But on the other hand, I have no graft versus host disease, because I have no graft. Actually the last check for my chimerism (measurement of more than one genetic fingerprint in an individual)  done years ago showed that I was still genetically in my marrow about 1% my wonderful Israeli donor (Yaakov). That is within the range of statistical error, but my wife swears it is Yaakov's lingering influence that has somewhat ameliorated my tone deafness.

Does that count as a partial remission?

My youngest son just visited him in Jerusalem. He is a gentle and generous young man.

Maybe losing the graft was for the best. GVHD (graft versus host disease) is tough and there can be worse, much worse outcomes. Only about half of those transplanted are still alive five years later to blog.

But I am doing well in my clinical trial and my life is most sweet these days. While it is possible that I might have been "cured" by today if I had been treated more aggressively those five years ago, it could just as easily been five years of misery with multiple hospitalization for some nasty mix of GVHD, sepsis, and relapse. Trading one disease, CLL, for another, GVHD.

I'll never know.

But it's hard to imagine a better life than the one I have now.

Sometimes it amazing how things work out and what looks like a disaster up close, from a distant turns out to be our saving grace.

I know how lucky that I am and for that I am deeply grateful.

Happy 4th!

Quick update: My talk to the San Diego CLL support group at UCSD yesterday was well attended and, I believe, well received. It was a great opportunity for me to meet others with my disease and share some of what I have learned over the last nearly eight years.

"Please understand I never had a secret chart to get me to the heart of this or any other matter" Leonard Cohen

Not much punch to this post. And certainly no punch line. Only the sober business of making choices.

These are my crib notes for tomorrow's appointment. Possibly the most important doctor's appointment in my short life so far. 

Or maybe not.

Dr. Forman Dec 15, 2008

Ask what he plans to do and shut up and listen:

If he recommends wait and see with a repeat CT and maybe BMB early in the new year then I must get across two points

1: Why not an urgent DLI?

As he is well aware, if I lose the graft or don’t have a second transplant my chances of living to 65 are negligible. I must make difficult choices, and not be guided by wishful thinking, but by the reality of my circumstances.

Without a new immune system, my brand of CLL is universally fatal. GVHD from a DLI can be too, but much less often.

When I relapse which odds are will be sooner rather than later, based on the medical literature for pts with 11q del and unmutated status, plus my personal disease history of quick growth when not getting treatment, I will then quite possibly be Fludara refractory with a very small chance of another CR (under 20% in most studies), so my likelihood of a second long remission are slim, and diminish with each subsequent treatment. More importantly my best chance for a cure with a second transplant is with a deep remission.

2: If CT or BMB do show any hint of relapse how seriously is he considering a second transplant?

If he is noncommittal, I argue that my indications are even more cogent for a second transplant soon than they were for my first transplant, as I have a lower disease burden, likely present access to the same well-matched donor, and my good health in a particularly nasty disease that definitely will reoccur without a new immune system.

If he recommends more FRC

Same argument. Even if I get a lengthy remission, which is very unlikely based on the literature with my 11q- and my unmutated status say 3 years, then what do I do? Also O’Brien and Keating did not recommend it, and the literature suggests once you have reached MRD- status, not much advantage in going further. I need to plan several moves ahead.  By doing more FCR now, I may be playing a card that I might need later to get into a complete remission for transplant if  the changes on the CT scan are not getting worse and I do remain in CR for a long period. I think this is not likely, but is possible.

     If he recommends a DLI

I need to ask if it doesn’t work, does that jeopardize the risk of a second transplant? What dose to start?

            If he recommends a second transplant,

Discuss finishing FRC first and what conditioning he plans.

Finally: Insurance forms, FU appointments and testing