End of an Era

A Mythical Magical Mix of Creatures: A Chimera

Today I learned that my chimerism test in my peripheral blood was 100% host and 0% donor.

This test measure the percentage of my blood cells that are from me and from Yaakov who generously gave his hematopoietic stem cells in a effort to cure my cancer a little over 8 years ago.

While this result was hardly a surprise as my last test over 6 years ago and done from my bone marrow was 3% donor and 0% of the important T cells.

And we all knew that sadly my transplant failed years ago precisely because I rejected the graft.

Now it is clearly documented that I am no longer chimeric. Remember that a chimera is a mix of two animals- a lion and a snake and hawk as a mythical example.

I am just me- not a trace of Yaakov in my bloodstream.

Some 8 years ago, I was, for a brief hopeful few months, both Brian and Yaakov, hoping to become 100% Yaakov in my blood, with the real chance that his healthy immune system would kill on my cancer forever. That I would be cured.

Sadly, that was not to be and I lost the graft and relapsed. That story and my subsequent challenges in controlling my CLL is the genesis and the guts of this blog.

Now that era is officially closed. I did the test as there are some cases of donor chimerism climbing when patients take ibrutinib. Not me. Probably because I  already was at zero donor when I started on PCI-3275 (AKA ibrutinib) 4 years ago.

The news makes me a tiny bit sad. It reminds of a more optimistic time when I thought I might be able to forever say goodbye to CLL. While I still harbor that hope, it is tempered with heavy dose of realism.

I will be forever grateful to Yaakov for his generous and selfless gift of a chance to save to my life. And offer me a window of such hope.
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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.

Very latest news and it's good

The preliminary biopsy report shows about 5-10% involvement, with both a nodular and diffuse pattern. The chimerism was basically "host" both in the total and the T cell. This is good news. A miraculous disappearance of all the cancer would have been better, but I'll take this in a heartbeat. The CLL is not gone, but it is not taking off either. It's moving nice and slow, so so can I. Final results on Monday.

Not sure what "basically host" means and what the implications are in terms of using the same donor or finding a new one for a second transplant.

But there is no rush now to figure this out.

Either way, looks like the CLL is not forcing my hand. Except for the ITP, I wouldn't have much to worry about. If the ITP continues to stay controlled with only IVIG and clean living, I am on cruise control. Sweet.

"When the world is running down, you make the best of what's still around" The Police

An' here I sit so patiently

Waiting to find out what price

You have to pay to get out of

Going through all these things twice.

Bob Dylan

I am still cancer free, but it looks like I may be rejecting my graft. My critical T cells fell to just over 50% donor down from 64% only 6 weeks ago, and my monocytes and granulocytes made in my marrow are all mine, 100%  recipient. No donors cells to be found. Looks like I needed to be hit with a bigger immunosuppressive hammer a the time of the graft. Looks like my own marrow and immune system were just too robust and beat back my invading donor. I was just too darn healthy at the time of transplant. I had this foreboding in hospital. It explains why I have had such an easy time of it and no (GVH) graft versus host disease.

This is bad news, no doubt, but the same blood test that showed the falling chimerism, also showed no CLL. So first I repeat the CT scan, repeat the bone marrow biopsy (BMB) and repeat all the lab test in 2 weeks and than I begin down a new path.

A donor leucocyte infusion (DLI) is possible, but not likely. Chemo is much more likely soon, and at sometime in the future almost for sure, a redo transplant, this time with a bigger chemo hammer. Could be real soon or years away. It could be never.

My leukemia sure took a dive with only 1 course of chemotherapy as it looks now like my remission was from the conditioning therapy (a common cocktail called FCR by its fans for its famed mix of the potent and poisonous fludarabine, cytoxan, and rituxan) and not  the much desired GVL (graft versus leukemia). Not really certain that is true. Not really certain of anything at this point. If it was the chemo, then it must be very sensitive which bodes well. And I feel well. And I look marvelous. Just ask my wife. All that is good.

I am off my anti-rejection drugs (tacrolimus and sirolimus) and my prophylactic antibiotics as of today. That may boost my donor T cells or maybe knock them out faster. Who knows?

I would say I won round one by a wide margin, but this will be a long fight. I was hoping for an early knock out, but I am dealing with a patient and wily, but weakened opponent. I remain certain of my ultimate victory. I'd be lying if I said this was a good day, but you would be mistaken if you thought I was going to be down for long.