Tuesday, May 29, 2012

They Know Me on Sight

I walked toward the hematology desk at Mayo Clinic and was greeted by name before I got there. No one wants to be that familiar at that desk, though of course it's a compliment to the sweet technician who remembered me. Imagine how many people she sees in a day, not to mention a month. Good news again today, though, at the end of the 55th 28-day cycle on the pomalidomide study, my numbers are stable once more.  I'm going to write a country-western song about pomalidomide .. my secret love, takin' me to bed every night, keepin' me alive ...

Cancer markers:

IgG is down about 6%, from 1210 to 1140 mg/dL, but it goes up and down a bit, and the difference may be within the measurement accuracy of the test. M-spike is unchanged at 1.1 g/dL. Lambda and kappa light chains both dropped slightly, though the ratio is about the same and I don't really know what the light chains mean anyway.

For the second straight month every other blood marker of any significance was within the reference range, even the red blood cell count. I feel very good, too, and I'm running well, considering recent surgery. I had been concerned about calcium, but it's been well within the reference range for three months now, so I'm sure I have no dissolving bones.


The annual meeting of the Americal Society of Clinical Oncology (ASCO) will be held in Chicago this coming weekend, and my sweeties and I have been invited to attend. We will be helping to staff an advocacy booth supported by the International Myeloma Foundation, and blogging about new myeloma research. We might even go for a nice run on the Chicago Lakeshore Trail.

Advocacy Issues:
  • Early Access to Emerging Treatments: Current rules often prevent doctors and their patients from trying new treatments, even if the patient is dying. We as a nation want to prevent patients from suffering unexpected side effects, of course, but for dying patients the side effect of NO treatment is worse.
  • Oral Drug Parity: Some expensive, targeted cancer treatments are administered as infusions in a clinic, while others are pills, taken at home. Because prescription drug coverage almost always has a much higher co-pay and deductible than the medical insurance that covers in-clinic infusions, patients whose best treatment option is a pill can be faced with bills as high as $10,000 per month. Some states have passed legislation requiring insurers to cover oral treatments on terms no less favorable than in-clinic treatments, and federal legislation is proposed.  It can't come soon enough.
More to come ...

Most-Recent Test Results:

Test    Mar 08    Apr 04    May 04    May 29     Remarks
M-spike g/dL 1.0 1.1 1.1 1.1 \ Tumor marker
IgG mg/dL 1100 1290 1210 1140 / Tumor marker
Lambda mg/dL 2.80 2.24 2.75 2.53 L Free light chains
Calcium mg/dL 10.3 9.6 10.0 9.7 OK
Creatinine mg/dL 1.0 1.2 1.0 1.2 Kidney, OK
HGB g/dL 14.2 14.6 15.6 15.7 Hemoglobin, OK
RBC M/uL 3.86 4.08 4.31 4.37 Red cells, not bad
WBC K/uL 3.7 6.1 5.3 4.6 White cells, OK  
ANC K/uL 1.70 1.50 2.70 1.80 Neutrophils, OK

Related Links:

My Myeloma     A discussion of my myeloma, not very technical.
My Treatment History Not technical.
My Test Charts Graphic displays of several key test results over time.
My Test Result Table Somewhat technical. Best with a wide browser window.
My Supplement Regimen With links to where I buy them.

Everything here is organic except the oatmeal in the meat loaf (we don't know where to get oatmeal that is both organic and gluten free). Yes that's a dill pickle in a sweet potato:


  1. Frequent reader, infrequent poster, Don. Congratulations on the great numbers! You are an inspiration! Here's to many more years of stable disease and a richly fulfilling life!

  2. You could probably publish a cookbook for MM´ers with all the gorgeous photos you have of your meals, Don. So very glad to hear the numbers are in the right directions for you!