Dear Family & Friends,

We’re home — very grateful to be here and beginning slowly to recover our strength.  Both of us are completely and utterly exhausted as well as traumatized by the whole experience which was much, much harder the second time around.

On the (really really) good news front, Barry’s bone marrow biopsy of August 16 showed No Evidence of Disease!  When we met with David Miklos on August 20, he was thrilled at the results.  While reading the narrative report from the lab, he kept saying things like “the cellularity is great” and “this marker is great” and he finally said the following two phrases:

“This is as good as it gets” and “Go live your life.”  He also said we didn’t need to see him for 3 weeks and the less we saw doctors the better.

On the bad news front, we finally got the chimerism (engraftment) results late last night and this is what David wrote:

Barry and Bonnie,

Unfortunately, your donor chimerism is decreasing.

We will recheck in 30  days as we decrease Barry’s immune suppression.
Will plan for DLI at 6 months if evidence of disease.  I am working on the High Throughput Sequence (HTS) for B and T cells to determine if you have any disease progression.
The relatively high CD3 is encouraging that:
1) your CD3+ PLL is not rapidly growing, and
2) donor immunity could still dominate.

I wish we had full donor chimerism

David

So here we are again.  Barry feels and looks great.  So far no evidence of disease, but as all of you cancer patients out there know, they never get every last cell and there is always a sword pointed at your head.  And with decreasing chimerism the chances for relapse are magnified. We will try to breathe and stay grateful for what we have now.

We just got off the phone with David who explained further his thinking.   It is way too early to do anything except taper the immune suppression meds, which we are starting tonight.  (He’s been off one for about a week.)  What he is looking for is an “immune response” which will allow the donor’s cells to bounce back and take over.  It is not impossible.  If that does not work, in a few months, and if there is disease progression, he will think about a DLI (Donor Lymphocyte Infusion) or treatment with chemotherapy drugs.  Treating any of this now would be highly dangerous.  As he said, “You sat next to some of those people”.  He’s talking about serious Graft vs. Host Disease which can be seriously debilitating as well as potentially fatal.

So he told us to hang in there.  And we will.  He reminded us that Barry got three good years out of the last transplant, and we are always aware of that, and grateful.  We can never know what the future will bring.

And now for something completely different (which I wrote before we got the chimerism results).

While Barry does not have to wear the HEPA Filter Mask anymore (except when in a medical facility) and is off most dietary restrictions, he still has to follow Miklos’s Ten Commandments:

1) Thou shalt not enter among crowds; be they in the theater, at the movies, or in games of sport
2) Thou shalt eschew public transportation, yeah verily even unto BART
3) Thou shalt not touch, even with thine hands, the person of another
4) Thou shalt not swim or douse thy self in the waters of a hot tub
5) Thou shalt not eat fish or meat that has not been cooked
6) Thou shalt avoid shopping carts and all manner of like implements
7) Thou shalt not imbibe of spirits even unto the fruit of the vine
Thou shalt not fly in airplanes
9) Thou shalt absent thy self from houses of worship yeah, even unto the High Holy Days
10) Thou shalt not whine over the foregoing but be grateful that there are not twenty such Commandments

Barry originally wrote this on his blog (www.agauchepress.com) after his first transplant.  Last year, at the annual BMT reunion at Stanford, another of David’s patients who had happened upon it, presented it as a plaque to David and he has it hung in his office.  When we asked him a couple of weeks ago about some restrictions, he just said “Consult my ten commandments”.

So, we’re back in circulation.  Ready for visits, restaurants (not super crowded ones) and matinee movies.  We really want to see our family and friends.  We’ve returned to our amazing Saturday yoga class and have resumed working out with our trainer.  Barry’s getting regular massages, and we’re making some extremely short-term plans.  I’m returning to work on Tuesday.

We live with the knowledge that if Barry did not have treatment and the transplant he would not be with us now.  In January, when the diagnosis of the aggressive T-Cell Leukemia was made, David told us that Barry could expect to live 4 to 6 months without treatment.

We are so grateful to everyone for their love and support and, of course, the incredible BMT staff at Stanford for their caring and competence.  And also to my work, for the great health plan they provide and for their understanding and support during this more than stressful time.

With love, gratitude and not a little trepidation,

Bonnie