I get e-mails from multiple myeloma patients like this one each and everyday. I found Dick’s story both compelling and instructive:
I was diagnosed IIIB light chain in 2001 at the age of 65 and treated with pulsed dex initially, followed by ASCT in June, 2002. This gave me 3 years of CR. As I slowly relapsed I was on BLT-D which more or less contained the beast for another 3 years.
It became aggressive in the summer of 2008 and I went on Rev + dex. This brought the numbers down, but platelets also dropped dangerously. I was informed in June of last year after a BMB that the myeloma had become very aggressive and developed into plasma cell leukemia with deletion of chromosome 13 and t(4:14) translocation! My onc then added Vel and after 3 3-week cycles, BMB and other tests show no signs of mm! This is the Rev/Vel/Dex protocol reported by Paul Richardson at the ASH conference last fall.
I had until recently been getting neulasta and IVIG every 3-4 weeks and procrit weekly to keep the white and red counts up OK but needed platelet transfusions almost weekly. The platelets have been coming up (68 currently) and the white and red counts are within normal range, which suggests the marrow is recovering from the effects of the chemo (and/or the beast).
I’ve begun a maintenance regimen: 4-week cycles consisting of rev (5 mg.) daily for 2 weeks, vel (1.0 mg/sq m) once per week for 2 weeks, and dex (4 mg.) on the day of and day after vel infusion; then 2 weeks rest.
Please send the link to your blog. And best of luck to you in your (our) continued struggle to survive. Thanks!
Dick Feil in Pennsylvania
Dick’s story is typical in many ways. He followed the only path available to him in 2002, undergoing a SCT. After three years of complete response he relapsed and has been using a variety of novel therapy agents to keep his myeloma at bay ever since. Lots of struggles, challenges and complications–some successes to celebrate as well! God, these patient testimonials I read daily are so inspiring! The depth of character fighting cancer brings to a person is immeasurable. Thanks for allowing me to share your story with my readers, Dick! Good luck to you as well.
Feel good and keep smiling! Pat