I am aware that there are low-numbered patients who are in pain and high-numbered patients with practically no pain.
The latter is my case. I've been OFF 15 mg Revlimid x 21 and 20 mg dex once weekly since August, just to give my body a rest. I lost 20 lbs (had gained 45!!) and edema is gone (couldn't quite pinpoint the cause for the edema as it only showed after the dex was stopped and Revlimid had been continued for another month)
My numbers went from IgG 7300 to IgG 1400 in August, now up to 2200 and M-spike followed in line. (BTW, at 7300, I felt just as good as now).
I feel wonderful and energetic despite the recent increase in numbers. My doctor wants to restart treatment before I go over 3000 (which I am probably by now; it's been 6 weeks since last testing)
So, should I try to get on Revlimid again with dex or onto another protocol?
My doctor mentioned melphalan and prednisone but I'm not hot on that. Prednisone gave me terrible eye pressure after surgery. No Velcade for me. I had decided against a stem cell transplant from the beginning. In fact, I would prefer to just stay off the meds.
Are there others who felt like I do and what did you decide and what meds are you on now?
Kate
