Thursday, March 6, 2008

New Chapter

I now officially have active, ISS stage 1 myeloma. It's not MGUS (monoclonal gammopathy of undetermined significance) or "smoldering" myeloma, and it's not what I was hoping for. That's the bad news.

The good news is that my myeloma is growing only very slowly, with a Mayo Clinic labeling index of 0.2, described as a "VERY LOW proliferative rate" (their emphasis). For anyone with myeloma this is very good news and cause for a lot of hope, for both the short and the long term. Dr. Lacy said that a person with this labeling index can expect to live a long time with myeloma. I didn't press her to quantify that, because we all know that the doctors can't give us hard numbers on our survival.

I will digest the results more and post again in a day or two, but here are some highlights. Bad stuff:
  • In two months, M-spike jumped from 2.05 to 2.7 g/dL. I suspect (and hope) that some of this jump is due to a difference in testing - this is my first-ever set of labs from Mayo.
  • Calcium, Beta-2 microglobulin, and lambda free light chains are all up from two months ago and all higher than they should be.
  • Most sinister: The PET scan clearly shows three very active regions in my bones: one in each shoulder blade, and one in the T10 thoracic vertebrae midway between the waist and the shoulder.
Good stuff:
  • Platelets, red blood cell count, hemoglobin, creatinine, and albumin are all well within the normal range.
  • Same with LDH and C-reactive protein.
  • IgG is the same as the last test at MOHPA, suggesting that the M-spike may not really have changed as much as the numbers indicate.
  • No abnormal proteins were found in the 24-hour urine.
Especially because of the PET scan, Dr. Lacy thought it was time for treatment, to deal with the hot spots in my shoulder blades and spine before those bones fracture. I reluctantly agreed; the last thing I want is a broken back. She suggested two possibilities:
  • Revlimid with low-dose dexamethasone (a steroid), or
  • A phase-II trial of a brand-new not-yet-approved drug with the code name CC-4047. This is a new Celgene drug, intended to be an improvement on Revlimid, which itself is an improvement on thalidomide. This too would be taken with dexamethasone.
I chose the trial.

When the drug-trial coordinator asked Dr. Lacy how soon I should start, she replied "yesterday!" Since then I have taken an EKG and had another full x-ray bone survey, and I will see her again tomorrow to wrap things up and start the trial.

Dex tomorrow night. Oh my.

Today's lunch before traveling to Mayo: Papaya, pineapple, organic medjool dates, pistachios, orange, organic fat-free yogurt.


  1. Dear Don, I'm very very sorry to hear this, more than I can say. I also need time to metabolize all this. Just 2 ideas: at first, things look always darker than they are. and with this I want to say that you're a runner - and not a sunday runner - incredibly fit, and for this your body will react very well to therapy. You are unique, in this. A trial in the trial. Second, fortunately, MM is progressing very slowly and this means that it can be stopped.It easier to live with a slowly progressing MM than with an aggressive one. For the moment it's all. Not much, but I need to think.
    Coraggio! Sherlock

  2. I am as sorry as Sherlock to read this news, Don. But, as you both point out, there is a lot of positive news here, too: your overall health, your normal values and let's not forget your positive ATTITUDE. Very important, that.
    So give those blasted cells a good whacking, Don! Sherlock and I will be cheering you on from Italy.
    Chins up!
    Florence, Italy