Thursday, May 29, 2008

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: 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.

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


  1. That seems to be nothing but good news. Good for ya!

  2. Dear Don,
    these are excellent results! I'm very happy for you. Super congratulations!!!
    I noticed that your LDH is very low now. Curiously I have this idea that LDH is a good predictor of the status of my MM. Very often, when my Mspike decreases there is also a decrease of my LDH, which is now well below the lowest margin.

  3. Thanks Peter!

    Hi Sherlock,

    Now that you mention it, LDH is at an all-time 5-year low, or at least it was on May 1. Huh. I don't know what to make of that.

    If LDH is produced in part by damage being done to the bones and other organs, then this is a very good thing. I think I'll Google it a little :-)


  4. Great Don! Please, post what you find on LDH

  5. Interesting post. One thing, though: please try to forget about statistics, will ya? Enough of this 2, 5, 10 year business. We will all beat the odds. Period. :-)
    As for low ferritin, since mine is very low, too, (sigh) and since my serum iron has also taken quite a dip (re-sigh), I would appreciate your posting your naturopath's recommendations for bringing those values UP. That would be great!
    I recently discovered, thanks to a blog reader, that curcumin is an iron chelator, so I have been doing some research on that topic and will post about it ASAP (the particular iron-curcumin study that I have looked at is so bloody complicated that I may have to go back to school in order to figure it out! Hehe). Anyway, this chelation business might explain my low serum iron. I am going to begin taking iron pills but would obviously prefer to bring my levels up via diet, not pills.
    Thanks as always, Don! :-)
    Florence, Italy

  6. Dear Don:

    Nice to learn that CC-4047 kept you energetic, and fighting back with MM.

    I am a retired molecular oncologist (67) in Melbourne, Australia, and an expert in PAK-dependent cancers including MM.

    Recently I learned that CC-4047 and its brother (or sister) CC-5013 (Children of Thalidomide) suppress the growth of MM by inactivating the oncogenic kinase PAK.

    Unfortunately, however, these thalidomide's children seem to be rather expensive, and cause a few side effects (although non-teratogenic!)

    So I have a suggestion: We recently found that a NZ propolis extract called "Bio 30", which is natural anti-PAK product, would be good for the therapy of these PAK-dependent cancers. Furthermore, It costs only US$1-2 daily (depending on your weight), and causes no side effect. Besides, it boosts your immune system. So I believe it would be good for taming your MM.

    If you are interested in Bio 30, please visit the following website:
    and watch a brief video.

    Warmest regards,

  7. Hello Heidi.

    Normally I delete comments that are advertisements, but this one seems quite relevant.

    Thank you.