After meeting with the Clinical Director of Oncology, Victoria and I have more to consider and digest. Last Thursday morning was an overwhelming amount of studies, statistics, trial protocols, and mortality rates.
In the words of Dr. Douglas Goldstone, chemotherapy and immunotherapy are like using a lawnmower or pulling a dandelion. Both remove what is above ground and visible, but it’s unknown whether any root remains. As long as root remains, Lymphoma stem cells remain, and the cancer will likely return.
With 2019 technology, medical professionals are unable to tell if any Mantle Cell Lymphoma stem cells remain after chemo and immunotherapy. PET/CT scans will only show cancerous tumors, not the microscopic stem cells which led to their formation.
Johns Hopkins has a 60-70% success rate with bone marrow transplants. The purpose of a bone marrow transplant is so the donor’s bone marrow blood product (T cells) recognize the Lymphoma stem cells as a virus and eliminate it. Unfortunately, it may take days to months before this recognition happens, it may not be successful, and it may trigger Graft vs Host Disease (GVHD).
With my health and success so far, Johns Hopkins wants to put me on a double-blind clinical trial for an experimental drug that is intended to aid in the recognition of cancer cells as foreign bodies to be eliminated by T-cells. Unfortunately, this experimental drug also increases the likelihood and risk of Graft vs Host Disease, so I will need to be closely monitored if I opt to join this study.
So far they have 16 patients on this study, they have a goal of 80. Mortality from Graft vs Host Disease for my age is around 3%. Between the effects, potential, and risk, Vicky and I had a lot to review and digest. If agreed to, it would begin in a month, and last for 6 months or so.
Your situation is definitely improving. I know you have fought this with everything in your power. You will make the right choice now. Thinking of you every day.