CC-4047 Rocks Again

Three months ago I enrolled in 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 an actual lifesaver for some who have exhausted other options. I hope it becomes more widely available SOON.

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 both 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.

Dexamethasone side effects:

• "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 seems quite fragile now.
• Dex voice (tight).

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.

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 livable 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:

• 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. Very "technical."

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 thought that was not an unrealistic expectation. Cool.
• We talked about running a little too. :-)

A late-arriving result: Dr. L had my blood checked for stored ferritin, with a result of 32 ug/L compared with a reference range of 24 to 336 ug/L. It's on the low side; I need to research this and maybe discuss with my naturopath, Dr. H.



Tonight's celebration salad: Organic romaine, cucumber, organic walnuts, avocado, organic strawberries, blue cheese, organic red wine vinegar, organic pomegranate juice.