J. Michael Jones

There is not enough here to warrant a posting, except this is where most of my kids and family find out what’s going on and I wanted to focus on some good-news items (as the previous posts had so much bad news).

RENAL FUNCTION:

As I said before, this is so important to me because it would be very bad news if I had to go back on dialysis. While dialysis is a pain for anybody, for me, when combined with the cancer, it would mean my life expectancy (based on statistics) would be cut to 1-2 years at most. Also, rather than dialysis making me feel better (riding me of toxins) it made me feel horrible for 48 hours. When you do it three times a week, it leaves no cracks for any quality of life.

The best practical way to measure renal function is a 24-urine collection for “creatinine clearance.” The normal for a man is above 60 ml/min. Dialysis is needed when it drops to 15 ml/min or less. When I was first diagnosed in Jan 2019, mine was 5 ml/min.

When I got to the cancer center, the nephrologist asked if I wanted to check again to challenge dialysis and I certainly said yes (my previous nephrologist had given up, saying I would be on dialysis for life). Then, when we checked it, my creatinine clearance was 24 ml/min, which is awful but does not require dialysis.

I just did a 24-hour collection two weeks ago and we just calculated my creatinine clearance and it is 29.5 ml/min, while still terrible, it is showing a significant improvement and takes me out of immediate danger of having to go back on dialysis and making the cut for the studies I’m trying to get into (which require a creatinine clearance of more than 20). So my kidneys were functioning at less than 10% in Jan, are now near 50%.

Myeloma Specialist

While I did my stem cell transplant, I was under the care of one of the top 5 Multiple Myeloma specialists in the country. She always turns you back over to your local oncologist when the stem cell transplant is complete. She, however, has reviewed my staging tests and called me yesterday. First of all, she doesn’t think it was a total loss as have had some subtle improvements including; 1) lesion in my scapula is gone, 2) the amount of my bone marrow taken over by the cancer is 1/2 of what it was and the 3) M-spike (the marker for the expression of the wayward plasma gene which is causing the cancer) went down from .2 to .1 (it has been .1 for most of my life). So, she has declared the stem cell transplant as a “partial response.” That is still not what we wanted as the cancer is still active and producing the kidney killing bad proteins. However, it may make the cancer easier to treat. We hope.

She also wants to see me to discuss the options going forward and I will see her Oct 22nd. I am still scheduled to be screened for the study on November 5th.

Restarting Chemotherapy

Yesterday I restarted chemotherapy with two drugs. One is the same one I had in the spring (Velcade), but at a much lower dose. In the spring it made me have flu-like symptoms for a few days. The second drug (Xgeva) is to harden my bones. My bones are fine right now, but MM often causes bones to dissolve and break and is one of the leading ways it causes death.

The good news is now, 24 hours after the chemo, I’ve had no side effects except for a slight nausea. That is promising, now only if it works to contain my cancer.

Labs

My anemia is very slightly improved this week and my white blood cells are stable at low-normal.

Symptoms

I am feeling about the best I have since being diagnosed in January. In the spring I felt horrible due to the chemo and dialysis. In the summer I felt like death warmed over due to the brutal stem cell transplant process. Now, except for the old neurological symptoms (which are some better) and the effects of being quite anemic (limited exertion), I’m feeling pretty good and in no serious pain.

So, compared to the endless march of bad news, this has some good news embedded here.  Mike