Don from St. Paul, Minnesota also responded to mb woods e-mail about novel therapies yesterday this way:
I went on pomalidomide (then called CC-4047), the new relative to Revlimid,
almost two years ago, with DEX 40 mg once/week. M-spike dropped from 2.7
g/dL down to 1.1 in four months, and has remained stable since, with a
decreasing amount of DEX. Back then x-ray showed lesions in the bones, but
the most-recent x-rays don’t show them. I was a marathon runner back then,
and still am. I’m a believer!
I know Don well. He spent years successfully using alternative myeloma treatment methods trying to keep his myeloma at bay. Eventually, Don and his docs decided it was time to bring in the “heavy artillery” and he started the pomalidomide study. Which segways into another e-mail I recieved today:
I’ve been on 25 mG Revlamid for about 1 year and take only 16-20 mg dex
once a week. I started on thal/dex.
My m-spike has been slowly rising from 1.3-1.5 over the past months. IgG
has gone from 1900-2200. The onc. says perhaps mixing in Velcade or
switching to it might be needed if it continues to increase. But like
anyone who can, I prefer the oral drugs. Is pamalidomide oral and
different enough from Revlamid that it might be a good option? Thanks-
Tom, Don might be a better one to answer your question, since he is actively participating in the pomalidomide study. But yes, pomalidomide is an oral medication. And yes, I understand a number of patients who have used Revlimid or Thalomid in the past, and who’s treatments have stopped working, are using pomalidomide successfully now.
Keep those questions coming, everyone! If I don’t know the answer, I will try to find someone who does. E-mail anytime. But please, remember I am not a physician, just a patient like you (or your loved one) who wants to help as many myeloma patients as I can!
Feel good and keep smiling! Pat