J. Michael Jones

Good News:

1. Labs: In summary, it appears my chemo is working, although my proteins are sill high. But it would have been a nightmare if it was not working. No, I’m not cured and there is no cure, but it means that I probably won’t be dying in the next couple of months, unless I’m hit by a bus. Yesterday, I didn’t know that and was rushing to finishing Denise’s garden in case I wasn’t going to be here in two months, serously.

Details:

The labs that check my cancer are back and I reviewed them this morning. Here they are in context:

When I was diagnosed the bad protein, IgG lambda light chain, was 2658.9 mg/l on 1/12/19. Normal is less than 24 mg/l. So it was extremely high (but in multiple melanoma it can be in the tens of thousands).

After doing 5 rounds of plasmaparesis (where protein is removed from my blood) and just starting chemo, my next test showed IgG lambda light chain was 246.3 mg/l on 2/519. It was impossible to know at that time if the chemo was starting to work or it was just the improvement from the plasmaparesis.

My last labs drawn on 2/26/19, therefore would only reflect the influence of chemo as the benefit of the plasmaparesis would have worn off by then. Here are those results ( I post the numbers for my kids who understand these things):

Free Kappa Light 22.9
Free Lamda Light 226.6 (normal is below 24)
Kappa/Lamda Ratio 0.1

What this means is that the bad protein has basically plateaued or even a little lower than four weeks ago by the effects of chemo alone. This means it is working. My dream would be that it would be normal as we don’t know if this elevated level is still doing damage to my kidneys. So, over all this is good news. It could have been better, but could have been much worse.

2. Kidneys: No change since my last post. I’m starting prepare myself for permanent dialysis, which I dread with a passion. Keep praying for kidney recover!

3. Symptoms: A neurologist friend did some research on my troublesome constellation of symptoms (all related to living in renal failure for at least a month). While neurological symptoms are common with renal failure, it appears that I have a unique syndrome called “Uremic Twitch-Convulsion Syndrome.” That covers most of my symptoms. I was puzzled as to why my symptoms didn’t go away after the dialysis brought my toxins back to normal. The studies show that these symptoms often don’t go away, ever. I am grateful that they are 20% better, so that gives me some hope that I will recover from these troublesome symptoms. Thankfully, I have not had the brain symptoms (almost like dementia). I am returning to work on Wednesday and so far my brain seems to be working okay. MIKE