As the title of this post implies, things have changed since October, when it appeared I had achieved a pretty good response to treatment.
Seven weeks later, in December, I began to relapse, and it has been a tough slog ever since. I could regale you with all the details -- and perhaps someday I will, when I get a chance, which could be coning up soon. The one image I would like to leave you with is New Year's Eve, which I spent in the hospital getting chemo under my old insurance. At the stroke of midnight, my new insurance kicked in. Which, I think, may make me the first person in the country to use their new insurance under the Affordable Care Act.
As required by the law, my new insurance provides for stem cell transplants, which my old insurance did not (which means, by the way, that Barack Obama may save my life). And so despite the relapse, I have some good news:
I am on track for an allogenic transplant within the next couple of months at the Mayo Clinic in Phoenix, AZ under the care of Dr. Jose Leis. Mayo has found three potential 10/10 donor matches, a far better pool than I expected given my unusual Jewish-Irish background.
The success of any transplant depends on the tumor burden going in, and mine has been big. But the Hail Mary chemo I have done (more R-EPCH) has set the DLBCL back. And I have been approved for Ibrutinib, which was Dr. Leis' hope and mine. Studies have shown it to be effective in cases of relapsed aggressive DLBCL, which is what I have. It doesn't work in all cases, but it works in many, so there are still miles to go until I sleep in terms of conditioning for the transplant.
Despite the exhausting roller coaster ride of December and January, I may soon find myself cooped up for 70 days in what they call a transplant pod, with nothing better to do than blog about my experiences -- including some important things I have learned in the past ten years.
My thanks to all of you who have written; I simply haven't had the time to respond personally -- or to write this simple post -- until now. The good wishes of friends and family help keep me going. Most of all, I have the love and incredible strength of my wife, Marilyn. This is our fight. And to paraphrase Churchill, we will never surrender. There have been many truly dark hours, but I see dawn ahead.
Reflections on year of both great progress and great sadness in the CLL world - Happy New Year. This year we lost 3 members of our local Orange County CLL Society support group, and I lost other 3 other dear CLL and CAR-T friends that ...
2 weeks ago