Saturday, July 3, 2010

Stable Again

Tuesday, June 29, was the end of Cycle 30 of my participation in the trial of pomalidomide (CC-4047). I'm pretty happy to be on that trial, because neither the myeloma nor the drugs have substantially impacted my lifestyle, let alone threatened my life. If you just ignore the fact that I have cancer (?) I'm a lucky guy, and I feel that way.

IgG and M-spike:

This time IgG was virtually unchanged, and M-spike actually went down from 1.1 to 1.0 g/dL. It makes me wonder if last month's M-spike result was off just a bit. That can happen, with M-spike especially. I wish IgG was down too, but maybe next month.

Lambda free light chains were down a lot, but Kappa chains were too, so the ratio improved only slightly - and I really don't know what these numbers mean in my case anyway.


Neutrophils remain dodgy. Last time they were 920 (little critters per microliter), below the cutoff, but this time they were 1090, just above. When they are below 1000 I am supposed to hold the pomalidomide until they come back up above, lest I fall prey to an opportunistic infection. Neutrophils are a key component of the very-complex immune system, and a low count (neutropenia) is dangerous. The good news, in my opinion, is that neutrophils seem stable. At first, after discontinuing dexamethasone (DEX), they headed downhill for a few cycles, but that decline may have stopped. I do make every effort to increase the count before each blood draw by exercising, which is supposed to force some of the neutrophils out of muscles into the blood stream. This time I jogged a half mile, pumped 30 pushups, walked up and down six flights of stairs, and did leg stretches. This is apparently a "legal" tactic, but I don't know if it helps. What DOES help, I'm quite sure, is to wait until afternoon for the blood draw, because neutrophils are naturally higher then. I'm trying to get my appointments scheduled for the afternoon instead of the morning.

Discussion with Dr L:
  • I have a funny-looking spot on my forehead that a dermatologist will check out at the next visit. It's not melanoma, but she can't rule out some other skin cancer.
  • I had heard someone in our support group say that her doctor told her to wear a medical bracelet saying "irradiated blood only." If I understood correctly, Dr L said that the risk is that a few white cells in the transfused blood could cause graft-versus-host disease, which the irradiation can prevent.
  • I asked if Mayo Clinic makes it a practice to inform new patients of the existence of support groups. She said that was specific to the doctor and also to the patient. She believes that some new patients are simply not ready to hear the kind of information that is shared at support groups, though others might be.
  • Dr L estimated that perhaps a third of the patients who entered the pomalidomide trial in my cohort are still in the trial. I didn't ask, but I assume that the drug has stopped working for most of those who have left the trial.
  • A similar pomalidomide study is currently open and recruiting more patients again, with a slightly different study objective.
Some current test results:

Test    Apr 01    Apr 29    May 27    Jun 29     Remarks
M-spike g/dL 1.0 1.0 1.1 1.0 Best tumor measure
IgG mg/dL 1070 1010 1110 1120 Variation is normal
L FLC mg/dL 1.82 2.41 2.58 1.74 L Free light chains
Calcium mg/dL 9.8 9.7 9.9 9.9 Below 10.2 is best
Creat mg/dL 1.2 1.3 1.3 1.2 Kidney, normal
HGB g/dL 14.6 14.1 14.7 14.5 Hemoglobin, normal
RBC M/uL 4.39 4.21 4.36 4.30 Red cells, normal
WBC K/uL 3.3 3.3 3.6 3.4 White cells, low
ANC K/uL 0.94 0.73 0.92 1.09 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 Best with a wide browser window. Somewhat technical.
My Supplement Regimen With links to where I buy them.

Nice gluten-free chef salad lunch at a local restaurant:


  1. This is good news Don. How many more cycles remain in the trial? Then what?

  2. As far as I know, I can stay on the trial as long as it is working for me. I imagine that the manufacturer wants to wring out all of the positive stats they can.

    "Then what" is a very good question. Velcade? Would Revlimid work after pomalidomide fails? Dunno. Dr L will guide me.

  3. OK. Thanks. Let's hope it keeps working since it seems quite tolerable.

  4. I just wanted to Thank you for taking your time and sharing your story with all. My father was diagnosed with Multple Myeloma januray 2009. The worst type and stage 4. Its been a struggle with ups and downs, nausea, pain, and good days also... He's been in so much pain lately and it hurts to see him suffer. I wish you well and hope you continue to improve.
    I will forward your blog to my parents.