Thursday afternoon I met with my myeloma specialist, Dr. Melissa Alsina. I have had a standing appointment with her every three months since before I went into remission–and quickly bounced-out ten weeks later–one year ago. But this visit was different. It was to be a fateful one; a turning point.
Due to significantly reduced cellularity (the ability of my bone marrow to produce healthy red cells, white cells and platelets), Dr. Alsina had recommended we finally–after almost six years–put Revlimid on the shelf and see if Velcade and dexamethasone alone could keep my myeloma stable.
To review, even a small M-spike can be dangerous for me. After my first relapse, I began to experience bone involvement and damage at a low M-spike of 0.5. So even an upward creeping 0.2 number was concerning.
Since I had never used Velcade until my induction therapy prior to my auto stem cell transplant 20 months ago, I had asked Dr. Alsina before we started consolidation therapy, after my transplant, if we should experiment with Velcade and dex alone. After all, I had been using Revlimid for the better part of five years. But RVD (Revlimid, Velcade, dex) worked so well for me during consolidation she didn’t want to mess with it. And in her defense, it had worked much faster post transplant than it had before.
But following that report, she had decided it was time to stop cold-turkey. “Let’s drop the Revlimid.” Said my doctor of few words.
So this appointment was key. After three months, could Velcade and dex alone do the trick?
YES! Results from last week’s PET scan remained stable, with the only questionable area my already damaged right hip. That single hot-spot could be written-off as layer upon layer of lesion-laced decay.
And my M-spike. A wonderfully stable 0.2. Weekly Velcade and 20 mg dex had done the trick and held the line. Better yet, my Kappa/Lambda quantitative free light chain ratio had dropped below the magic value of 1.0; now 0.93.
But there’s more. Monday I am going to explain how this seemingly mundane result–a 0.2 M-spike–may have been the most fateful news I have ever received as a soon to be six year multiple myeloma survivor.
And what about my “Thank God for Velcade!” headline? Since I am experiencing far fewer side effects now that I’m off Revlimid, I feel like I have started to get my life back!
I would like to note that I feel my headline ethically requires me to remind my readers that I was formerly a Millennium (makers of Velcade) Patient Ambassador. Millennium payed my expenses when I traveled around the country to speak to myeloma support groups, even before I started using their drug. But traveling was difficult for me, and I am no longer physically able to be a part of the program. Pattie and I are still doing some “patient perspective” consulting work for Millennium from time to time.
And why not? I might as well recoup a small (very, very small!) amount of the money my insurance company and I are paying them each month. Just a touch of sweet myeloma patient pay-back!
Needless to say, Pattie was ecstatic about the news. We plan to celebrate by going on a fun St. Patrick’s day outing Sunday–a must when your wife’s maiden name is Doyle.
Feel good and keep smiling! Pat