In the six years that I’ve been battling cancer, the first three years, the cancer was out of control, having failed four toxic chemotherapies and a stem cell transplant. Then I went on a program of a monoclonal antibody and a toxic oral chemotherapy, and within two weeks, the blood tests showed no evidence of cancer. I have been regaining strength and only have the persistent damage from the uncontrolled years, such as renal failure, and the side effects from the toxic chemo I’m still on.

But blood tests have limited value in evaluating multiple myeloma. Imagine cancer cells were pigs, then blood tests (light chains, M spike) would be like sniffing around the outside of the barn to determine if pigs were inside. After three years, it was time to don a headlamp and go inside the barn to look for pigs.

Over the past four weeks, I’ve had a multitude of tests at Fred Hutchinson, including a PET scan and a bone marrow biopsy with genetic testing and a close search for cancer cells, call a clonoSEQ.

Since multiple myeloma is an incurable cancer (so far), the best one can hope for is MRD (minimal residual disease), where the clonoSEQ finds zero cancer cells in the marrow (no pigs in the barn). The prognosis is much better with a Neg clonoSEQ, and in my case, it would mean I could go off the toxic chemo.

My original clonoSEQ test in 2019, my bone marrow was around 14% cancer. I prayed, I kept my fingers cross as I waited for the results of this last test. On Friday, the results were in. My clonoSEQ was unfortunately positive, but very low. My cancer cells are roughly .0008% cancerous, or 8 cells per 1 million normal cells. While this is very low, it means that I am not in MRD and therefore, coming off the toxic chemo is not a slam dunk. They are leaving the decision up to me. If I come off the toxic drug, the chances of my cancer exploding again is higher. However, I would feel better off the drug, plus the drug itself has lots of risks, including stroke and developing leukemia or skin cancer (which is why I wear a hat most of the time now).

So, it is like life in general, which is a mixture of the hideous and glorious, I have good news (very low cancer count) but not great news as not making the MRD mark, which has a much better prognosis.

Mike