Thursday, March 8, 2012

Celebrating Four Years on Pomalidomide

This month is the fourth anniversary of my start in the pomalidomide study, and today is the end of the 52nd 28-day cycle. The news is pretty good.

Bones: Because calcium has been a little high lately, suggesting a possible bone issue, we did a skeletal survey and a bone density scan today. Quote from bone survey report: "Generalized spotty osteopenia without localized lytic lesions. No change since 3/4/09." That works for me! Although x-ray doesn't always show myeloma lesions, this report means that I probably do not have a bone on the verge of breaking. Furthermore, the bone density measurements were the same as two years ago, within the measurement accuracy of the DEXA system, so my overall bone health is good. That's all good news. I do not take Fosamax, but I do take Vitamin D3 and Vitamin K2 (not Vitamin K).

Cancer markers: IgG dropped significantly, from 1280 to 1100 mg/dL, and M-spike obediently followed, dropping from 1.1 to 1.0 g/dL, where it hasn't been since last September. That's very nice. I doubt it's a trend, but wouldn't that be great? Lambda light chains are up, from 1.99 to 2.80 mg/dL, but kappa chains are up too and anyway I'm not sure that light chains are an important marker in my particular myeloma.

Other: Calcium is still high, at 10.3 mg/dL, but that could be a lingering effect from the marathon last Sunday. Some dehydration happens in a marathon, like it or not, and recovery takes a while. Liver markers are at the top of the reference range, too, but we might attribute that to the marathon as well. Neither is an issue right now. Both the red blood cell count and the white cell count are a bit lower than usual though, and I don't know what to think of that. We'll see what they do next month. Actual counts are shown below.

Doctor L:
  • I pointed to a rash on my leg, suggesting that it might be from the Bactrim DS antibiotic that I've been taking, or perhaps it could be from shingles. She said that it could be the Bactrim, which has a reputation for causing rashes, but that it wasn't shingles. I was taking the Bactrim to deal with an infection in my jaw, a bad tooth, but the tooth is getting better after some dental work and I stopped the Bactrim a few days ago. The rash looks a little better already, but not enough yet to know for sure that Bactrim was the cause.
  • I asked again how long I can remain on the pomalidomide study, and she confirmed that I can probably take it until my myeloma no longer responds to it. She knows of one myemomiac who was in the first Revlimid study and is still on it after eight years.
  • We discussed my sports hernia (abdominal wall strain, athletic pubalgia) and she actually suggested acupuncture. Some of her patients have found great relief from neuropathy through acupuncture, when all else failed. This is about healing, not pain relief, but who knows? I'm actively seeking an acupuncturist - willing to try anything to avoid surgery.

Most-Recent Test Results:

Test    Dec 14    Jan 12    Feb 07    Mar 08     Remarks
M-spike g/dL 1.1 1.2 1.1 1.0 \ Tumor marker
IgG mg/dL 999 1190 1280 1100 / Tumor marker
Lambda mg/dL 3.15 2.24 1.99 2.80 L Free light chains
Calcium mg/dL 10.3 10.0 10.2 10.3 High
Creatinine mg/dL 1.1 1.0 1.0 1.0 Kidney, OK
HGB g/dL 15.1 15.1 15.2 14.2 Hemoglobin, OK
RBC M/uL 4.17 4.36 4.18 3.86 Red cells, low
WBC K/uL 4.8 4.8 4.5 3.7 White cells, low-norm
ANC K/uL 1.90 2.40 1.70 1.50 Neutrophils, low

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.

Two lovely volunteers with the three of us after the B&A Trail Marathon last Sunday:


  1. Great news Don! I've been discussing with my Doc, how long I can take revlimid. Your suggestion that maybe until I stop responding is an answer that makes sense.
    Thanks for all your details and analysis.

  2. There is at least one patient from one of the very first Rev studies who is still on it after eight years.

    Go for it!