Wednesday, March 9, 2011

Best Possible News

Well, the BEST possible news would be if the cancer magically disappeared, but I haven't seen anyone walking on water lately except the locals who fish through the ice. Otherwise the news is all good:
  • IgG is down from 1200 to 1050 mg/dL;
  • M-spike is unchanged at 1.0 g/dL, but this month it actually makes sense;
  • Free light chains are stable, similar to other recent values;
  • A bone-density (DEXA) scan shows a slight INCREASE in bone density. The differences in results are within the measurement error of the machine, but at least the bone density has not gone down since one year ago; and
  • A PET scan three years ago, at the beginning of this study, showed myeloma lesions in three bones. Today's scan shows no lesions. Combine this with good blood-test results for calcium, kidney (creatinine), and hemoglobin, the C.R.A.B. symptoms are all negative, so the myeloma is not symptomatic any more. Cool.
This was the 39th cycle of the pomalidomide drug study at Mayo Clinic in Rochester. Pomalidomide and dexamethasone brought my M-spike down from 2.7 to 1.0 g/dL in just a few months, and has kept it stable since. According to one famous doctor (I can't remember who), stable disease is almost the same as a complete remission. I'll remain on the study, of course, because no one believes that the myeloma will sit still without the pomalidomide.

Happily, the dexamethasone was gradually reduced, and finally stopped over a year ago, and the pomalidomide has been on its own since then. I have mild side effects: Slight neuropathy in fingers and feet, and a reduced heart rate which affects running but nothing else. There is also a risk of deep-vein blood clots, for which I take an aspirin daily. I am happy to accept those risks and side effects in exchange for symptom-free myeloma.

Kudos to Mayo Clinic:

All of the tests, including all of the blood tests, an electrocardiogram, the DEXA scan, and the PET scan, were done in one day, with all results available by the end of the day. What a place. It sounds like bragging, I guess, and perhaps it is, but really I wish everyone could live close to a medical center like Mayo Clinic. I feel blessed.

Actually, I did have the CBC with differential done on the previous day, not because Mayo would have any problem with it but because my neutrophil count is always higher in the afternoon, and my other blood tests are done in the morning. It worked again - the neutrophil count has to be at least 1000 lil' soldiers per microliter, or I have to stop the study for a while, and they were 1610.

Doctor RH:

Dr KDS is gradually going away, which we lament, but alas, it will really happen. She stopped by today, but for most of the appointment we saw Dr RH, who did an excellent job in her stead, of course. We discussed:
  • Recent pain in the left hip. Is this myeloma? Answer: Wait for PET scan results. Later in the day, the PET scan was negative for lesions anywhere, including the hip.
  • Recent pain in the right femur: Myeloma? Same as above.
  • Second primary cancers in stem cell transplant patients on Revlimid maintenance: Dr RH was totally up to speed on this issue, and also confirmed that the "information isn't there" to tell us whether people on pomalidomide maintenance could experience the same thing. Anyway, I think the whole issue may end up being a tempest in a teapot. I hope. There are a LOT of good doctors looking into it though.
Some Current Test Results:

Test    Dec 16    Jan 13    Feb 07    Mar 09     Remarks
M-spike g/dL 1.0 1.2 1.0 1.0 Best tumor measure?
IgG mg/dL 1080 1170 1200 1050 Best tumor measure?
L FLC mg/dL 2.41 2.49 2.47 2.50 L Free light chains
Calcium mg/dL 9.8 10.3 10.1 9.6 Dandy
Creatinine mg/dL 1.0 1.4 1.0 1.0 Kidney, OK
HGB g/dL 14.6 15.3 16.0 15.2 Hemoglobin, good
RBC M/uL 4.23 4.48 4.44 4.40 Red cells, marginal
WBC K/uL 5.1 3.3 4.1 5.3 White cells, OK
ANC K/uL 2.50 1.19 1.40 1.61 Neutrophils, sufficient

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.

Roast bison, quinoa with organic spinach and raisins, organic variety tomatos:


  1. I only come here for the pictures of food but fantastic news on the other results! :D

  2. Agree Mayo is a blessing. Those are great results. Your trial will pave the way for others to get the same good news. Love your posts and all the details. So did you back off the calcium before this round of tests?

  3. Don, I'm a fan of your (yummy) myeloma dishes. Thought about telling more about cooking?
    Best, Peter

  4. Actually, Sunshine is the cook. I just arrange the food on the plate, take the picture, and scarf it down.

  5. Congrats, Don!

    Wanted to let you know I just recommended your blog to readers at a large, new site for health advocates called WEGO Health.

    Informative Multiple Myeloma Patient and Caregiver Blogs.

    Keep up the great work! Pat

  6. So what do you think is causing the hip pain. The reason I ask is I have the same problem - good numbers, no lesions but hip pain in both hips. Avascular necrosis was mentioned due to steroids. What did doctor think about your hip pain.

  7. Hello Successful,

    I haven't talked to my Primary Doctor yet about the hip. It got somewhat better, and in fact I ran a marathon Saturday with very little pain in the hip. Pain everywhere ELSE (muscles), but not the hip. Slight pain today, first run since the marathon.

    I alternate between two different glucosamine/chondroitin sources, and I did change one of them, but it's probably too soon to know if that had an effect.


  8. HI sir, I've been reading your blog for a few months now and I would like to as how is the the CC-4047 treatment going? what phase is the study now? will the drug be available soon?

  9. Hello xRoryx,

    CC-4047 is now called pomalidomide. I've been on it for three years now, and it has kept my myeloma stable.

    The study I'm in is Phase II. I don't know if or when a Phase III study will begin. The manufacturer is Celgene - you may want to ask them when pomalidomide will be available.


  10. thanks for the reply sir, I've read from wiki that pomalidomide has promising results and it's a new version of thalidomide. Hope it will be available soon.

    God bless