Thursday, July 4, 2013

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.

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2 Comments:

Blogger Randy Shannon said...

Brian, great post... What would be wonderful is an indication if GVHD would be evident prior to a BMT. As a long termer diagnosed 2004-I was kicked off the BMT train in early 2008 due to a kidney issue, I have seen both good and bad with the BMT people. I sometimes am thankful that I was spared the procedure...especially with the new treatments we are seeing.

Congratulations on succeeding through your failure...

Randy

July 5, 2013 at 9:01 AM  
Anonymous Anonymous said...

This is a great post; sobering and true but inspiring none the less.
The comment that 5 years later less than 50% of those who have had transplants are around to write their blogs......well we are both able to write our blogs and both pretty healthy even with our respective leukaemias. I must update my blogs so my many followers know that I am still fighting for us all.
Just did a walk for Cancer Research today, was very inspiring
All the best from Sunny London

July 6, 2013 at 10:53 AM  

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