To show me how to ride the ultimate wave Beach Boys or HOW I SAVED MY LIFE

It's just the way things change now

Like the shoreline and the sea

Leonard Cohen

This post will be of most interest to CLLers or anyone considering a hematopoeitic stem cell ( bone marrow) transplant (HSCT). There is some repetition of information from prior post and some jargon that has been explained in the past.  If you want to skip the medical story, please read the last two paragraphs.

This is a summary of what has been accomplished so far and what is yet to unfold. It is about how I have changed and what changes are coming as I say a final good bye to CLL.

Let me set this up by reviewing the conditioning. Mine was RIC (reduced intensity conditioning) and is usually non-myloablative. This kinder, gentler regime does not wipe out my whole bone marrow and with it, hopefully every last cancer cell. What it does instead is make a little space in the bone marrow for the new graft and beat up my immune system so I don't reject these donor cells. It is a much less miserable and risky procedure than the more intense myloablative transplant. It relies on the graft to do the heavy lifting to find and destroy the "foreign"  cancer cells. My specific protocol used Fludarabine 30/M2 x 3 days. cytoxan 750/M2 x 3 days, Rituxan 375/M2 x 1 day  and then Rituxan 1000/M2 on day 1+. 8+. and 15+. It is specific for CLL.

My first task was not to die from an infection when I was most vulnerable. Mission complete. Now that my neutrophils are >1000, I am past the hurtle of neutropenic sepsis, but I am still at risk for infections from bacteria and molds that usually don't cause trouble for someone with a normal immune system (opportunistic infections).

My next goal was to engraft. Done. Over the next several weeks to several months, my bone marrow will be increasingly taken over by my donor cells. It may never reach 100%. Dr. Forman, anticipating my catastrophizing, told me that a final mixed chimerism where I remain part old and part new is associated with less graft versus host and not less disease control. The doctor in me wants to see the published research behind that reassurance, but the point is moot as I will end up where I end up. The gentle conditioning may be associated with a slower engraftment. I can live with that.

Next bullet to dodge is acute graft versus host (GVH): rashes, liver disease, diarrhea, mouth sores and so on. It can kill you and in fact after infection is the second leading cause of death in HSCT. It usually would have started by now. The highest risk is the first 30 days and I am already day 18+ so I am looking pretty good. By definition any GVH before day 100 is considered acute.

The penultimate issue is chronic GVH. This is tricky. All the studies suggest that those with some chronic GVH (but not acute GVH) have a lower relapse rate of their leukemia. The highest cancer relapse rate is when the donor is an identical twin where there is almost no GVH. Makes sense as GVH and GVL (graft versus leukemia) are often, but not always dance partners. So maybe you want some mild GVH (some dry skin would be OK) to let you that know your graft is being vigilant in its search and destroy mission. Dr. Forman is not convinced of the necessity of the connection and feels my protocol may give me the best of both worlds. Again, I say show me the data. But GVL without GVH is the holy grail of transplant world.

Which brings me to the ultimate issue, the raison d'etre  for all this awesome transplant adventure:  TO BE CURED. My blood is already cleaned up (and there was a trace of cancer in my blood when I was admitted), but that is the easiest target. The bone marrow and the nodes will take longer to be purged. This is dependent on my graft establishing itself before my CLL can rise again from the near dead.  Relapse is the third leading cause of death.  

I am confident that is not in my future for three cool calm reasons: my disease burden was low at the time of transplant, it is demonstrably lower now, and my graft is already taking off. 

But maybe more important is that I am riding a wave of love and support and prayers from so many, and I am taking it all the way to the shore of joy and health. Thank you. Thank you. Thank you. I couldn't do it alone.

Hey, more than 60 posts and finally use a surfing analogy. Feels right. Tubular in fact. So far the rides been smooth and glassy. I am so blessed. Surfing USA.