In early March, I joined a phase-2 trial (study) of Celgene's new IMiD drug CC-4047, with once-weekly dexamethasone. This third cycle brought another good result. My two primary markers, IgG and M-spike, are both down more than 50% after three months. This is an excellent response, especially since I stopped responding last year to thalidomide, a relative of CC-4047. I know 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 a lifesaver for some who have exhausted other options. I hope it becomes more widely available SOON.
CC-4047 side effects for me:
No neuropathy, thromboses, leukopenia, neutropenia, or other difficult side effects yet, though these are all possible.
- Bradycardia - my resting heart rate has dropped from about 48 to about 41.
- Slight reduction in red cell count and hemoglobin, taking both just below the reference range.
- Tinnitus from the aspirin that I take with the CC-4047.
Dexamethasone side effects:
Considering the good response and the dex side effects, Dr. L reduced the dex dosage from 40 mg to 20 mg once weekly for the third cycle just completed. We will continue with 20 mg for the fourth cycle.
- "Peppy" and not-so-peppy days, fitful sleep one day 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.
- Thinning of my skin; it is quite fragile now.
- Dex voice (tight).
I'm lucky, or blessed, in so many ways. Though I can't run as fast as I once could, that's unimportant in the big picture. 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.
Other things that Sunshine and I discussed with Dr. L:
- The loss of muscle mass and the thin skin, both caused by dex, may be reversible if I can ever stop using dex.
- There is not enough information yet on CC-4047, or on its relative Revlimid, to know if either drug is likely to cause other cancers or to change the myeloma to a more aggressive type. So far so good.
- The absolute amount of drop in IgG and M-Spike seems to be somewhat less for each successive cycle, and that trend is likely to continue. It's the direction that is important. I notice that the drop in IgG as a percentage of the previous measurement has been about the same from cycle to cycle, about 25%.
- I expressed the view that since the current treatment is working and there are lots of other treatments available, I might expect not to die from myeloma for five or ten years even without any advances in treatment. Dr. L said she felt that was not an unrealistic expectation. Cool.
- We talked about running a little too. More than a little :-)