Treatment Decisions - Myelodysplastic Syndrome – Kirby S

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Video Transcription

After immediately searching the Internet and learning how serious this disease was, we wanted to get treatment, my wife and I, immediately. I didn't want to just watch and wait for the disease to progress. A local doctor that I had first seen was unwilling to do much other than watch the blood counts. I was not satisfied with this, so I looked for trials and other ways to treat the disease. At that time, there were no drugs available directly for MDS. You had to use off-label from other drugs used in other cases. I was rejected for a trial at the University of Arizona for a drug because I was considered too high-risk at the time. Returning to Cincinnati, we found a very good doctor and clinic at the Good Samaritan Outpatient Cancer Care Clinic. Dr. Ranga Brahmamdam agreed to treat me. He's been a wonderful doctor. And he used the drug thalidomide, which had been used for other bone marrow cancers. MDS patients using this drug respond in about 20 percent of the cases, and after four weeks, my blood counts started to improve and it really worked well for me. So we were very pleased with that. I was able to conveniently use thalidomide for two and a half years, and then it started to lose its efficacy, or ability to control the disease. I then changed to a newer drug, Revlimid, which had been developed and was now approved for use with MDS. The Revlimid, again, worked well for me, and I, for 18 months, I utilized this drug. So I was really fortunate to have a very good response to these different drugs. We also use Procrit and Neupogen to boost the red cells and white cells as the need would occur, and I did have a good response with these medications also. I am now an eight-year survivor of MDS, and over the years, we've changed drugs several times. Fortunately, I seem to be able to respond and have even been able to go back and reuse a drug that had been used in previous years. So my advice is try to find the doctor who will treat you and don't give up. Just keep trying the different drugs.