Myeloma patients seldom die from myeloma, they die from the complications from myeloma, and how this is reported might be one reason for this discrepancy. The number one reason is pneumonia, other infections, kidney failure, anemia, etc.
This, therefore, brings me to the realization that supportive care for the treatment of the many complications of this disease may just be as important as the cancer treatment itself. Or a great Defense(supportive care) is as important as the Offense(cancer therapy). MD Anderson and Mayo Clinic emphasize supportive care in their programs, UAMS actually has a Director of Supportive Care in their myeloma program, and Dr. Elias Anaissie, the Director of the Myeloma Program at the University of Cincinnati Cancer Center, has an extensive background in supportive care. Dr. Anaissie has published a well written example of an exceptional supportive care model. You can read this publication if you CLICK HERE. The British have another great publication on supportive care if you CLICK HERE.
I can only speak from my own experience, and that comes from my treatment at UAMS. They made sure that patients and their caregivers knew of the complications from the disease, and especially during the neutropenic phase of the stem cell transplant when you have NO immune system. My wife, and caregiver, and I were given instruction in these complications, and she was trained on how to give me antibiotics and other drugs through my infusion port. We were also given instructions on what to do if I had a fever. In addition, I was administered an anti fungal, antibiotic, and antiviral as a replacement for my immune system. Because these myeloma centers of excellence have seen most every eventuality, their supporting care staff has the same extensive experience with the complications from myeloma and its treatment. Without this experience, locations that do not have a large myeloma population just " Don't Know what they Don't Know"! This education came in handy when I was running a fever of 103 from pneumonia, and my wife and daughter forced this "I'M OK MAN" to go to the emergency room, where they were just able to pull me from the jaws of death. I went septic in just a few hours, and that for a myeloma patient is most often terminal. It went from, I am tired and need to lay down, to a fever, and the emergency room in just a few hours.
I also wonder why the top myeloma specialists who report their survival rates have a two year death rate of just 3 to 12%, whereas the two year average death rate reported by the National Cancer Institute is 34.4%. Maybe they "Do Know what they need to Know"! You are 3 to 11 times more likely to survive 2 years under the care of a skilled myeloma professional, as compared to the average of all facilities reported by the National Cancer Institute.
For more information on multiple myeloma survival rates and life expectancy, go to the web site www.myelomasurvival.com, or you can follow me on my twitter account at: https://twitter.com/grpetersen1