Tuesday, May 6, 2008

CC-4047 Rocks!

In early March I joined a phase-2 trial (Mayo Clinic study) of Celgene's new IMiD drug CC-4047, with once-weekly dexamethasone. My two primary markers, IgG and M-spike, are both down almost 50% after just two one-month cycles. This is an excellent response, especially considering that I stopped responding to thalidomide, a similar IMiD. Another patient that I know had an even better response on the same study, with markers dropping by half in just the first cycle. I have heard that other patients have done well too.

CC-4047 is not a cure for myeloma, but it may become a very important tool in managing it and, I'm sure, a lifesaver for some who have exhausted other options. I hope that Celgene will do whatever it takes to get it approved soon - people's lives are on the line.

CC-4047 side effects for me:
  • Bradycardia - my resting heart rate has dropped from about 48 to about 41.
  • Slight reduction in red cell count and hemoglobin, taking RBC just below the reference range.
  • Tinnitus from the aspirin that I take with the CC-4047.
No neuropathy, thromboses, leukopenia, neutropenia, or other difficult side effects yet, though these are all possible. Albumin seems low, but other liver markers are normal.

Dexamethasone side effects:
  • "Peppy" and not-so-peppy days, fitful sleep one or two days a week.
  • Increase in belly fat - I'm pretty sure this is happening.
  • Loss of muscle mass, especially quads - my running speed is declining.
  • High blood sugar levels on "dex day," as measured with glucose monitor.
  • Dex voice (tight).
Considering the good response and the dex side effects, Dr. L has changed the dex dosage from 40 mg to 20 mg once weekly. And the study continues, now well into the first week of the third cycle.

I'm lucky, or blessed, in so many ways. Most important, myeloma has not yet hurt me. Aside from painless lesions inside three bones, I have no symptoms from the disease itself, and symptoms from the treatment are quite modest thus far. I wish that all myeloma survivors were so lucky, or blessed. Thank you for your prayers, and I offer you mine.

Related links:

Free-range no-hormone no-antibiotic chicken, organic chard with dried cranberries, macadamia nuts, organic apple, organic pomegranate juice.


  1. Some great information here Don, we are very interested in all you write, and it looks as if everything is going well. Hamada and I send our very best wishes to you and Sunshine. Sincere Regards.

  2. "Myeloma has not hurt me." Five excellent words, Don. :-)

    Keep up the good work!

    Florence, Italy

  3. Great! Great! Great!