Friday, February 8, 2013

Pomalyst (Pomalidomide) Approved by FDA

Five years ago two different therapies had failed to stop my myeloma's upward climb, and finally a PET scan showed holes in my bones. This was Stage I disease, and time for a treatment that would actually work for me! I went on a trial of CC-4047 (later pomalidomide, now Pomalyst) with dexamethasone, then eventually Pomalyst alone. It brought my numbers down quickly, and now my myeloma remains stable, with an M-spike of about 1.1 mg/dL. More-recent PET scans and X-rays have not found holes in my bones.

My family and I have enjoyed five free years, with a high quality of life. During that time I have been privileged to run 43 marathons in 34 different states which, added to previous marathons, comes to 70 marathons in 50 different states. Just last December, when I was 71, we finished that 50-state odyssey in Hawaii.

For those five years I have taken a little red Pomalyst pill every night, and have escaped the disabling injuries that myeloma can cause, but without the severe side effects and frequent clinic visits of regular chemotherapy. In fact, side effects have been minimal. It has been a miracle for me - I've literally been free to travel and free to run. I do take very good care of myself, with the best food we can find and plenty of exercise and sleep, but those few milligrams of Pomalyst most certainly have been the key. Now that Pomalyst is approved by the FDA, it has the potential to do for thousands more patients and families what it has done for us.

Pomalyst is evidence that research, innovation, and new technology are making a big difference to those of us with myeloma. Add the recent approval of Kyprolis and Velcade sub-cutaneous, plus more drugs in active studies and on the way to studies, and we have reason for a lot of hope. Dr. Durie of the International Myeloma Foundation (IMF) counted 700 different abstracts related to myeloma research at the recent conference of the American Society of Hematology (ASH). Myeloma is certainly not yet a chronic disease for most of us, but we are heading that way.

Here is today's FDA announcement, titled FDA approves Pomalyst for advanced multiple myeloma.

Live one day at a time and make it a masterpiece! - Dalai Lama

1 comment:

  1. Don,
    I came across your blog while searching for information on Pomalidomide. I am an AL Amyloidosis patient, diagnosed close to the same time you were. I also was a runner and have completed 12 marathons, most in the Pacific NW, but I did the Berlin Marathon in 1998, which was a hoot to run. I have struggled with AL Amyloidosis and have been through a heart transplant and two stem cell transplants. I still see too much Lambda Free Light Chains in my system (last blood draw was at 6.4). Due to a drop in my orthostatic pressures, my oncologist wants to put me back on chemo. She likes the Pomalidomide. She has some concerns with carfilzomib and the fact that I have a transplanted heart. My heart transplant was the easy part of my treatment. It is pushing back the plasma cells that have been a bear. Anyway, I also have a blog, “Tin Man of Wenatchee” that logs my progress through everything since 2009. Anyway, I may tap into your experiences from time to compare notes. It would be a dream come true if I could get running again. Take care and stay healthy.

    Rick Klinge