J. Michael Jones

Last night I returned from a long anticipated trip back to the Seattle Cancer Care Alliance. I left there around July 20th, 2019, weeks after my transplant. There has been a lot of water under the bridge since. I had to go alone this time as Denise was starting her new job.

To be concise, There were a few positives and negatives. I think the positives won out in the end.

While the stem cell transplant did not give us the results we had hoped and prayed for, which was no trace of cancer, it did give me a “partial remission.” That was clarified by the specialist as one local oncologist said it did nothing for me. Depressing.

I had a big work up looking for “extramedullary lesions.” This means cancer lesions outside of the bone marrow. That is very common with Multiple Myeloma, indeed the typical first symptom is a broken bone from invasive disease. After 16 or so x rays and a full body MRI, we found no such lesions. That’s a good thing as those lesions are the most common reason for death.

The specialist reviewed my present treatment and made only modest modifications. She did say, which I had concluded myself, that my cancer cell count is low, just that it did a huge amount of damage to my kidneys when it first presented. She agreed that it was time that I start to think about living rather than dying. I’m not talking about my attitude, but as a clinical strategy. In the beginning I was told I was most likely dying within months. So, for example, we deferred my routine health. Why do cancer screens for colon cancer if I’m not going to be around in six months?

I had another careful kidney work up. My kidneys are continuing to improve . . . slightly. I’ve mentioned before that the best measurement of kidney function is GFR. Normal is >59. I started in Jan 2019 at 4. I came out of the hospital last summer, having just gone off dialysis at 18-19. I bounced around at 20-21. My tests in Seattle (24 hour urine) showed that my GFR is now 27. Not quite half of normal, but much further along and away from dialysis (which they start when the GFR is around 15-16). My electrolytes were right down the middle. They had been high since going off dialysis. As I mentioned before, not having an elevated potassium or sodium has given me the freedom to diversify my diet a bit. I’ve been able to eat tomatoes once or twice a week and I drank my first glass of orange juice in 14 months after my labs came back on Monday. That was a real treat.

My MM specialist did agree that I need to be under the care of a MM specialist in Seattle. We will schedule that soon. I had been trying to do this for six months but COVID-19 derailed that. While I may not need their expertise right now, eventually (if MM follows the typical course) my cancer will explode again and will need immediate attention as not to wreck havoc with my kidneys again.

My long term future lies in the typical course of remaining in partial remission for 2-3 years (at least) and then having to start new therapies to tame any flare up, all hoping that one of the cures they are working on (CAR-T or BiTEs ) are proven by then. Those are getting really good results but with potential serious side effects and not durable (cancer comes back in a year or two).

I will probably not be doing more health updates unless there is something new. Thanks for taking this carnival ride with me.

It was nice to be in Seattle again and to have coffee with two of my sons. Fantastic city. Keep watching Fox News (where they show scenes from Bagdad and say it’s the carnage in “liberal” Seattle) if you want, so we can keep this glorious city for ourselves. Portland is a wonderful city too.

Mike