J. Michael Jones

For a change, I have mostly good news to report. However, before I get started, I do want to add a caveat. I do have multiple myeloma, which is considered, at this point in history, incurable. So, there will be a day of reckoning sooner or later. My greatest hope is that I can stay alive long enough until a cure hits the market (which could be within 3-5 years). I only say this because whenever I report good news, it is sometimes interpreted as “Mike you’ve beat cancer! I heard you’re cured!” So, I wanted to be clear. I will share about winning some battles, but the war still stretches out to the grimy horizon.

LABS:

I had my routine labs done one week ago and my anemia and renal function are slightly better, continuing this course of slow improvement. I am very thankful about this course. Additionally, I had my cancer labs repeated, which I will discuss below.

Feeling Better:

I’ve been very open here about suffering, and I’ve only shared the half of it. However, I’m feeling the best I’ve felt since this terrible diagnosis. The reason is, I’m not doing heavy chemo or dialysis right now and the brutal side effects of the stem cell transplant are now waning.

I have two major complaints, which separate me from being almost normal. The first are my neurological symptoms which persist (muscle twitching and jerking). The second is my intolerance to exertion. We are not completely sure what is causing the later symptom, it still could be the anemia. This symptom is better than a few weeks ago, but still limits what I can do. I am very grateful for feeling better after feeling horrible for 10 months.

The State of the Cancer

Today I saw my multiple myeloma specialist at the Seattle Cancer Care Alliance. We had in hand the results of my most recent cancer labs. I had shared a few weeks ago the devastating news, that I learned from my local oncologist that the stem cell transplant completely failed. However, considering the fact that my most recent cancer labs are better (the “M-Spike” is now only a trace and the bad proteins are lower), and my specialist review of my previous labs (bone marrow biopsy and full body MRI) had a different interpretation of them. She believes that the stem cell transplant did reduce my cancer by at least 50%, in other words, a partial remission. So, still it is not the stringent remission that we had hoped for, but it is not the total loss of effort that we first believed. It could mean that we can keep my cancer in remission with minimal chemo for years to come.

Because my cancer is “milder” that previously thought a month ago, I will not be a good candidate for the CAR-T study, which I had mentioned before. This is not bad news as the study was a last grasp for hope. However, the CAR-T is not a cure but gives patients about 1 year of cancer remission, with a high risk (>5%) of death from the actual treatment. It will also mean that I will not have to spend two more months in Seattle this winter but could possibly return to work if I continue feeling better, have no setbacks, and my old employer still wants me back.

So, in conclusion, these things are all good news. I still covet your prayers that my cancer will stay in remission, miraculously disappear, that my lingering symptoms will vanish, and that my family, Denise and the kids, will be encouraged.

Thanks so much for your support. Mike