These last couple of months have been a roller coaster ride for Vicky and me. I think the latest ups-and-downs began with my hospitalization in November at Virginia Hospital Center. When I began a Saturday with diarrhea and a fever, it became a neutropenic fever of 103’F and a blood infection of pseudomonas. I ended up in the hospital for a week for treatment, meanwhile, the targeted radiation therapy of my left inguinal lymph nodes continued while I was there in the hospital.
When we were discharged from the hospital, we learned that the Seattle Cancer Care Alliance (SCCA) had a place for me in their CAR-T Cell Therapy clinical research trials. The earliest admittance would be mid-December. Since Vicky and I were still battling my increased edema in both legs and my scrotum, and the last we knew was that my mantle cell lymphoma (MCL) had aggressively returned (necessitating the radiation therapy), we tried to go to Seattle as quickly as possible.
And so on December 18th, we flew from Sterling, VA, to Seattle, WA. For the week of Christmas, I was subjected to a battery of blood tests, diagnostic imaging, and biopsies. Unfortunately, the lymph node they biopsied was the same cluster they targeted as part of my radiation therapy. The bone biopsy from my back was within the same radiation field. A week later, both biopsies came back negative. At least my lymphoma hadn’t metastasized according to these results?
So SCCA did a whole-body CT scan with contrast from my neck to my pelvis to find other lymph nodes they could act upon. I would no longer qualify for the original clinical trial, but I might qualify for a different trial. We awaited the results.
And today we learned that the targeted radiation therapy significantly decreased the lymphatic tumors in my inguinal thigh and iliac regions. While I still have cancer, still have mantle cell lymphoma, still have splenomegaly and an enlarged liver, there are no other sites they can act upon. SCCA spoke with Kaiser-Permanente and recommended that I continue with traditional chemotherapy such as Revlimid/Rituxan (R2) to eliminate my cancer.
I was shell-shocked, to say the least. This isn’t a declaration of remission, I still have cancer, but that it’s controlled enough that the Seattle Cancer Care Alliance thinks it can be controlled or eliminated through traditional chemotherapy. Vicky and I thanked the team for the news and their support. Next week we’ll be flying back home to be warmly reunited with our family and friends.
So while I am very thankful, I don’t know how to process this. I hope these are the last steps to my remission and cure from cancer, but I’ve been whipped around more than a few times this past year. I’m being cautiously optimistic about it. At least we are going home. I am thankful for this time in Seattle at the Cancer Care Alliance, and especially for the support of Vicky’s uncle and aunt while we were here.
RELATED (Pictures from our time in Seattle):
This is terrific news, Ken. So glad you’ve kept on fighting despite the odds. I’ll keeping rooting for you to beat this thing. Welcome home.
Guarded optimism and continued prayers toward your complete recovery. So very hopeful.
Thank God. I came here on your blog because I wanted to know how you were doing. Cancer is a terrible thing. My immediate and extended family as well as friends have had various forms of it. I hope to meet you, Vicki and your babies some day next time I’m in town and you are well on your way to good health again. Please keep this updated. Maybe Vicki can help write if you aren’t feeling well? It seems like you have plenty of people rooting for you. As always, I enjoy seeing photos of your adorable family. Hugs to your pups!
Janet
Groovy man. Certainly the right direction.