Dear Family & Friends,

We have results from Barry’s bone marrow biopsy and PET/CT scan of a week ago. The most excellent news is that there is no evidence of CLL (Barry’s cancer) in any of the molecular tests. The not so great news is that Barry’s chimerism (the engraftment percentage) has gone down quite a bit, to 57% in the marrow and 64% in the peripheral blood. After a sleepless night, several emails and conversations with David Miklos, we are feeling much better. He said, and I quote, Barry is “in the best possible position” given his formerly “high-risk disease” state. He is way way more concerned about the cancer than the graft, and is convinced that Barry will engraft eventually. In fact, he likes slower engraftment rather than a quick engraftment because of the higher incidence of Graft vs. Host Disease (GVHD) with a speedy engraftment. In addition, if the graft begins to fail, he can give Barry a Donor Lymphocyte Infusion (DLI), basically a booster shot of the original donor’s stem cells, and that generally works. He does not want to go that route now as it often leads to GVHD and a possible life-long steroid treatment regimen. He also said that now that Barry is off of the anti-rejection, immunosuppressant drug Cyclosporine, he often sees spontaneous chimerism improvement.
He also said that the chimerism charts we are seeing are created for the protocols (clinical trials) that Barry is a part of, and that means no one is really sure what it all means. That’s why they are studying it. If he was not on a protocol all we would be getting would be reports that he was in complete remission (CR) and that there were no signs of CLL
Last week when we met with Dr. Miklos, he was very upbeat. Since Barry has passed the six month mark, a significant milestone, he will be going off some more drugs, in addition to Cyclosporine, and some of his restrictions have been lifted. His food restrictions are all gone (although I doubt he will ever eat fresh unpasteurized mozzarella cheese again, and David suggested he still stay away from fresh deli meats), and he even said he could be in crowds from time to time, like going to the theater. He actually said “things come up and you live your life.” Our sense was that he is very pleased that Barry has stayed infection-free for so long, does not have chronic GVHD that requires steroid treatments, that he looks and feels good, and that he is asymptomatic (no swollen glands, etc.). And this was before the test results showed no cancer. We have tremendous trust in David Miklos — he is inquisitive, brilliant and caring. Also incredibly responsive to all of our questions and concerns.

On the shingles front, we also met with the pain doc, Ian Carroll, last week, and he was also upbeat. Barry doesn’t have to see him again for a couple of months — his shingles pain is getting better and we have instructions on how to titrate down on his meds.

So it’s time to practice patience once again — a difficult task for us, and particularly for Barry, the glass is half-empty guy (as usual, see www.agauchepress.com for his views on these new developments). Living in the moment, practicing what we learn in yoga, and enjoying what we have, which is enormous, has become a real part of our life now — our new life. We will never have the old one again — perhaps that’s not a bad thing. Just different.

Hope this wasn’t too much information, but this is part of my therapeutic way of dealing with the roller-coaster of emotions and the stresses and fears of the last couple of years.

My love to you all,

Bonnie

P.S. I have posted my email journal to www.agauchepress.com as well under submissions in the lower left-hand corner.