July 12, 2022
I hope this email finds you doing well and enjoying summer. When I last wrote I had a theme of a glass half empty or half full. As the weeks and a couple of months have gone by, the glass has emptied a bit, and the most recent CAR T therapy has slipped in its effectiveness. Meaning, I have relapsed once again.
When we chose the recent CAR T treatment, we knew it would either be a hit out of the park or would declare very quickly that something else needs to be done. I have entered the something else phase.
In discussing the options with our team, Sharon and I have chosen to again try for the long ball. That would be a bone marrow transplant. This means I will need to find a donor who is willing to share their bone marrow with me. The search is on. Our team at the Fred Hutch is masterful in this treatment and they are guiding the way.
There are two steps to success. The first is to get me into remission. Meaning, get rid of the lymphoma masses primarily in my liver, my neck, and a few other locations. I will be treated in Sacramento with a combination of therapies. A twice daily strong oral medication, Duvelisib, which I began this past weekend, combined with a weekly infusion of Obinutuzumab which will begin this week.
Simultaneously the team at Fred Hutch is searching for a donor for me. Once they find a match, assuming the local treatment is working, Sharon and I will relocate to Seattle once again for 3-months or more. This entire process from start to finish could take up to a year.
There is a classic line from Spiderman movies that says, “with great power comes great responsibility.” This treatment option reminds me of that, as with this approach there are great risks and great rewards. We are hoping for the reward of a cure, living many years cancer free.
This decision is not made lightly. The deeper I enter treatments like this, the more my life and its meaning is on my mind. What have I done that has had impact in the last 68 years? I believe I have made a difference in four ways, through my medical practice, my health IT experience, my work with the Leukemia & Lymphoma Society, and most of all through our children. In each step of the way I have been supported by my partner, Sharon.
What else can I do in the next several years that will make my life’s experiences even more worthy? I so very much want to see the legacy of our children and grandchildren. I want to be able to visit with them outside of my treatments. It is so hard to camouflage what I am going through. The young ones can see right through it. I so want to change this dynamic.
Finding a donor is difficult. A perfect match is the ideal. At the moment I am told there are some donors for me who match 90%. Adding your information to the national donor registry is easy. If you are interested in learning more about what is the process of being a donor, you can visit the web site https://bethematch.org/. It is very informative and will tell you what is involved. If not for me, then for somebody else in the future.
I am also so very proud of our Dr Larry’s Team for Blood Cancer Research fundraising. With your help, this month we will be donating $100,000 to the Leukemia & Lymphoma Society in support of a research grant based at MD Anderson in Houston, Texas, to look at a unique triple combination of medications for Chronic Lymphocytic Leukemia patients for their initial treatments. The goal of this is to achieve long lasting remissions for these patients so that they do not face the challenges that I have endured over the last 12 years. Our fund continues to be open and accepting donations. Any amount is helpful. Click here for the link to contribute.
Sharon and I cannot thank you enough for your continuing support and caring.
Our world continues to have its challenges. Stay well and stay safe.
Sincerely,
Larry and Sharon