Saturday, October 23, 2010

Pomalidomide Rocks

At least for me it does. I've been on a study of Celgene's pomalidomide (CC-4047) for 34 complete cycles now, and it has kept my myeloma stable for all of that time. At first I took it with "low-dose" dexamethasone (DEX), and after two years graduated to pomalidomide alone (actually with aspirin and acyclovir). M-spike and IgG dropped quickly in the first three months, and for more than two years IgG has been about a third of the starting value with M-spike tracking appropriately.

"Pomalidomide" is the drug's generic name, while CC-4047 is a code name for the same drug in drug trials. Someday it may have the brand name "Actimid," when it is available for sale. I hope that happens soon, because it's good stuff and people are dying right and left.

I think this is publishable news: Mayo Clinic will soon open a new arm of the CC-4047 study. Entrance criteria were not established when I was there on Oct 20, but one objective is to make it available to more people who need it, so I suspect the entrance criteria will be fairly wide.

Cycle 34 Test Results:

At the end of the previous cycle, my IgG was down a little and M-spike was up. This time, IgG is up a little and M-Spike is back down. I suppose that's the definition of "stable" for us myelomiacs, because these tests do have some error tolerance and our blood varies too. Other markers, like lambda light chains, calcium, and some of the CBC blood counts are virtually unchanged. No problem - a boring visit -:) Let's have lots more of those!

Neutrophils were a bit of a surprise, though. The study requires at least 1000 of those tiny critters per microliter of blood, or else the pomalidomide has to be stopped until neutrophils climb above that mark again. Sometimes mine have been below 1000, so we've chosen to switch to 1:00 pm blood draws, taken the day before the Mayo visit, because my neutrophil counts are reliably higher in the afternoon. This time, though, the afternoon count was 2100, actually well into the "normal" range, and another count the next morning at Mayo also showed 2100. Why? Maybe because I have a miserable cold, and those little buggers are an essential part of the battle that's going on. They have been recruited and they are rallying!

Mayo, Dr KDS:
  • I have a pain in the index finger of the left hand - can't quite localize it though. Could it be myeloma? Answer: Probably not - myeloma usually attacks larger targets with more marrow.
  • I changed my diet this month to reduce the amount of simple sugar. This means no cookies or other sweets, and less fruit. Since the myeloma didn't change much, I believe this experiment was a failure and will go back to the higher-fruit diet.
  • I also had more constipation than usual this month. It's a known side effect of pomalidomide, but we agreed that the increase was probably due to the reduction of fruit in the diet.
  • An afternoon blood draw produces a neutrophil count about 50% higher than does a morning draw, for me. Dr KDS tried that with another patient, though, and it didn't work. We're all different.
Some Current Test Results:

Test    Jul 29    Aug 24    Sep 23    Oct 20     Remarks
M-spike g/dL 1.1 1.1 1.2 1.1 Best tumor measure?
IgG mg/dL 1160 1100 1070 1130 Best tumor measure?
L FLC mg/dL 1.86 2.79 2.58 2.78 L Free light chains
Calcium mg/dL 9.9 10.1 10.0 10.0 Below 10.2 is OK
Creat mg/dL 1.0 1.3 0.9 1.0 Kidney, OK
HGB g/dL 14.0 15.7 15.8 14.9 Hemoglobin, OK
RBC M/uL 4.16 4.39 4.43 4.31 Red cells, marginal
WBC K/uL 2.8 4.4 4.2 4.3 White cells, OK
ANC K/uL 0.93 1.41 1.60 2.14 Neutrophils, normal!

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.

Cell-phone photo along a local running trail. I love Minnesota in the fall!


  1. Did your doctor have an estimate of when the pomalidomide will be approved by the FDA? When I talked to Dr. H last June, she didn't know. Hopefully, I have a long time left on the Revlimid, though!

    Glad you enjoyed your trip to KC!

  2. I'm happy for you Don. Your detailed analysis of treatment with pomalidomide gives hope for those of us who have not yet required maintenance therapy. Inevitable, we will but options are increasing.

    Keep running!

  3. Don- way to continue to dominate!

  4. Thank you Don for all your information.

  5. I like the name Actimid it sounds like something you'd take for a headache!

  6. I've heard that "Actimid" is too close to "Actifed," so Celgene hasn't called it Actimid yet. They do own the name, though, and the domain name.

  7. Karen -

    I don't think they have even started the Phase III trials yet, so it's some time away.

    There is a new pomalidomide trial opening up, though. Dr H will know about it.

    Best, Don