Steve's Rockin' Recovery

We want to share our good news: my blood counts are normal for the first time in over five years! This means that, finally, my immune system has recovered from my transplant. I also had reconstructive surgery on my right achilles. The combination of normal hemoglobin and a stronger ankle is such a relief. We can now imagine and plan traveling as empty nesters when Kai goes to college this fall. We are grateful to so many people: Annabel for her gift of my new stem cells, a genuine act of altruism; the extraordinary team of doctors and nurses at UCSF for their compassionate and expert care; and our family and friends for your love and support. We could not have made this long, complicated journey without you. Our good news coincides with the launch of the Leukemia and Lymphoma Society’s annual Student Visionary of the Year Campaign for donations to support LLS’s efforts to cure blood cancer. Kai participated in 2022. Our nephew, Henry, is leading a team this year. Please consider donat...

This is a short post to highlight the fundraiser for the Leukemia and Lymphoma Society (LLS) that our youngest son, Kai, has joined with a group of high school friends to support LLS’s efforts to cure blood cancer. I am so grateful to be a lucky survivor of leukemia, thanks to my stem cell donor, Annabel, and progress in the treatment of blood cancer that LLS has helped fund. Here is the link to Kai's fundraising page:  https://events.lls.org/ gba/ggsoy22/kpayne .  The fundraising drive closes this coming Saturday, April 30. Thank you to all who have already generously donated to help others, like me, survive blood cancer. All the best, Steve

Happy Year of the Tiger! We  wish you happiness and health in 2022 ! The highlight since our last update is that  we  have connected with my  amazing  stem cell donor, Annabel,   to tell her how grateful we are for her gift that saved my life. Annabel is from Germany and lives in Paris. The donor registries only permit contact between donors and recipients after the second anniversary of transplant. We met Annabel  over Zoom (how else these days?!)  and  look forward  to meeting and thanking her in person.  Thanks to Annabel’s stem cells, my blood counts remain  stable  and I am feeling  better and better .  The biggest challenge recently has been avoiding  Omicron as my immune system continues to recover.  UCSF has given me  prophylactic injections of COVID antibodies (AstraZeneca’s  Evusheld ), because I did not maintain an adequate immune response  after receiving my booster ...

I am not sure there is a finish line to this marathon but I hope I am close: I celebrated the second anniversary of my transplant on Sunday, September 26th, with no evidence of leukemia and, finally, stable blood counts. My blood DNA is 100% donor. Jakavi, the drug I started in June, is mediating the graft versus host disease (GVHD) that had been suppressing my blood counts for so long. UCSF has changed my blood tests from weekly to every six weeks and, if my counts remain stable, will extend the testing to longer intervals. I feel good! It’s been a long and challenging recovery, which often has felt more rocky than rockin’. With stable blood counts, my recovery is now focused on rehabilitating my achilles and fractured vertebrae and waiting for my T-cell count to rebound to a level where I can stop taking the last of my antibiotics. I am hiking again, pushing my mileage up to between three and five miles and working on pace and strength. I am relieved to have developed some immuni...

Happy Memorial Day to you all! We hope you are enjoying the long weekend. My road to recovery has been challenging since my last update. I feel like I’ve hit the wall at mile 18 of this marathon for a second time. The first time was last year when my red blood cell count crashed and both my achilles ruptured. This time my white blood cell count plummeted and my L3 vertebrae fractured. I took my first ambulance ride and spent four days in the hospital before the pain was sufficiently under control to go home. I now know what 10 on the pain scale means.   The vertebrae fracture occurred sort of spontaneously like the achilles ruptures a year ago. I sneezed reaching for something, heard a loud pop, and then collapsed to the floor — really. High dosages of Predniso...

Here is short update on my most recent blog post, following a meeting with UCSF this week. My doctor, Dr. Smith, discussed my case with the full UCSF transplant team. There are no definitive studies of my specific case of graft-versus-host-disease where donor B-cells produced in my bone marrow attack healthy blood cells and so no standard protocol for lines of defense beyond Prednisone, which seems to moderate the donor B-cells but leaves me more immunosuppressed and is only a short-term solution. The new consensus plan is to keep monitoring my blood counts weekly and to start an oral chemotherapy drug called Methotrexate to suppress the B-cells as the Prednisone is reduced — the goal is to reduce the Prednisone (and Tracrolimus, which suppresses T-cells) to zero. I received infusions of Methotrexate in the hospital after my transplant. The UCSF consensus is that an oral supplement could moderate the B-cell attack on healthy blood cells longer-term and may avoid a splenectomy. Phew! In...

Happy 2021 and Chinese Year of the Ox!  We hope you and your families have stayed as healthy and sane as possible during this tragic COVID pandemic and chaotic vaccine rollout. Health : This update is overdue. We’ve been waiting for a trend of good news to share from weekly blood tests and doctor appointments post-transplant. The challenges continue to be rehabilitation of my two ruptured achilles and an unusual case of graft-versus-host disease (GVHD) where my new immune system destroys healthy blood cells. I was making good progress rehabbing my achilles until partially re-tearing the right one in late October and landing back in a walking cast. I am now back on track and dreaming of returning to trail running this year. The biggest challenge has been GVHD. My hemoglobin counts stabilized following Prednisone treatment and Rituxan infusions, but then my white blood cell and platelet counts dropped precipitously in November and December as I tapered off Prednisone. UCSF tried...