Ready or Not, Here We Go!

As most of you know, we have spent the last two days down at MD Anderson updating labs and consulting with Dr. O’Brien, head of CLL, and Dr. Shah, our transplant doctor.  In a nutshell, the flag has waved and we’re on our way.

Many still inquire as to why we have chosen the more aggressive route.  My numbers are actually stable and I am not in immediate danger.  The thing that is easy to forget, but important not to, is that I have all the possible negative markers making it basically inevitable that the transplant will be necessary sooner than later.  I could wait another three months, check my numbers, and see if my body becomes unable to continue fighting as it is now.  But why?  There are encouraging treatments on the horizon, such as the BK inhibitor PCI-32765, but it could be years before we know its effects.  I don't have years.

When the February appointments were made, I did not have a match.  After F-22 came back with the antibody issues, I specifically prayed that if God wanted us to move forward as of the February appointments that He provide the donor.  He has now not only provided one perfect match but an additional two near perfect matches!  How do you ask for something so explicitly and then say no?

Both doctors are totally on board but had to make sure that we understood the possible consequences.  We do.  Today, Dr. Shah asked if I was nervous.  I would be lying to say otherwise, but I also trust in my Lord and my doctors.

The first stop on this phase of the journey is my Campath regimen.  For those who remember a few posts back, Campath is a monoclonal antibody that, instead of killing everything like traditional chemo does, attaches to the targeted antigen for destruction.  It’s like a laser-guided bomb.  The primary side effect is a suppressed immune system, so I will have to be much more guarded.  (I will be taking two antibiotics to protect against infection, Bactrim DS and Valganciclovir hydrochloride …or Valcyte for short. :)   The good news is that after a first injection to see how I do and second one for practice, Paul will be able to administer these to me three times per week at home, eliminating some of the endless driving that will take up much of the next months.  The first round will be for four weeks after which I will go in for blood work, a bone marrow biopsy, and meetings with both doctors. 

While I’m on Campath, Dr. Shah’s team will be deliberating between the three donor candidates and determining the best fit.  They have now found that blood type and the physical condition of the donor can also play an integral part.  But that’s their job.

Depending on how my marrow responds, they will either allow the Campath to continue whittling down my diseased cells for another round, or they will decide to move on with transplant conditioning.  The prayer here is for the Campath to work well.  The more disease that can be killed without killing me in the process is a good thing.  When my numbers are where they want them to be, they will have me take three weeks off to allow my body to recover and then proceed with the transplant conditioning.

The next stop will be my 30-40 day stay at MD Anderson, starting with conditioning therapy.  The transplant conditioning will either be myeloablative or non-myeloablative.  I know.  Big words.  If you recall in a previous post when I discussed a possible “mini” transplant, these are what makes the difference.  Myeloablative means that they will use the highest-powered chemo and kill everything possible.  Non-myeloablative means that they use a little lower powered chemo and trust that the GVL (graft vs. leukemia) effect will do the trick.  Today, Dr. Shah said that they will not make this decision until they see what happens with my marrow.  Currently, she is leaning toward myeloablative because I am young and strong and it increases the probability of killing all the bad guys.  So we’ll see.  Either way, I’ll lose my hair.  Whatever.

Currently, we have surmised that the stable condition of my disease probably stems greatly from the strength and health of my body.  However, my insides are working SO hard to fight the leukemia that fatigue and weight loss are increasing.  I have to eat more than I’m comfortable doing just to keep weight on.  But still I lose.  This is another indication that the timing is good for moving forward.  My body can’t keep this up forever!

So as scary as the prospects of the transplant are, we are confident that this is the path that will provide the greatest possibility of extended years.  I have a dear friend who battled breast cancer last year and also took the more aggressive route.  Sometimes you have to choose the hard thing up front to increase your odds later on. 

There is so much to live for!  I guess I’ll save that for another day.