J. Michael Jones

Where to begin?

This morning my latest labs returned with a consistent evidence that since April my cancer is returning, although slowly. My renal function slightly worse. Other labs okay.

I saw my myeloma specialist last Tuesday. She is still in agreement that my myeloma is coming out of remission, but it is doing it slowly enough that we are not in a rush to make major changes, but to plan for that. On the last visit we discussed two possibilities for our next step, either a new chemo called daratumumab, or entering a CAR-T study. Now, the next step is clear, daratumumab, as the study is no longer an option.

Tomorrow morning I’m having a whole-body PET – CT scan. I’ve had a significant pain in my right ribs for about four months and we need to rule out a metastasis (extramedullary lesion of myeloma). If it is, it will require focal radiation treatments. My prayer is that it is a simply strained muscle.

I’m not one to “look on the bright side” because I see that type of thinking as Novocain for the soul. I would rather feel disappointment, than to not feel at all or to base hope on an illusion. Yes, disappointment is my breakfast every morning. Yet, I can still appreciate a beautiful day. With that said, there is a silver (but tarnished) lining to this change. The chemo I’ve been on for 18 months is weak. I only went on this specific chemo because it was right in the middle of the first surge of COVID and my risk of death from COVID was extremely high. My present chemo is the only one I can do from home and that’s why we choose it. Each trip to the hospital in early 2020 was a flirt with the COVID death angel.

Daratumumab is a (weekly at the start) inpatient infusion, being inpatient means that Medicare will cover it. Secondly, it is considered to be a much better chemo (works as a monoclonal antibody against the cancer) and our hope is that my myeloma will respond better. Lastly, the past two chemo’s I’ve been on, both work the same way, and have the number one side effect of diarrhea. I’ve struggled with diarrhea for about eight months now and I hope this new treatment will not have that side effect.

So it looks like I will have to move on to daratumumab by December. My hope is that it will keep me in remission for a few years, until the CAR-T or other new modalities will be perfected to a cure. Yet, I must always be prepared for the worst.

Besides my diarrhea and rib pain, I’m feel pretty well.

Thanks for your interest and continued support during this marathon.

Mike