How to Live Longer With Multiple Myeloma

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If you’ve got multiple myeloma, the best kept secret to living longer is not a secret any more: It’s having a doctor that sees hundreds of myeloma patients, not handfuls of myeloma patients.

A recent study by the Mayo Clinic showed that people diagnosed with multiple myeloma are more likely to live longer if they are treated at a medical center that sees many patients with this rare blood cancer.

Using the National Cancer Database, they looked at 94,722 myeloma patients diagnosed with myeloma between 2003-2011. They classified the 1,333 facilities in four groups based on the number of patients treated. Shockingly, over 82% of the facilities that treated myeloma patients were non-academic facilities. And most patients (59%) were treated in nonacademic facilities. The average facility only had 6 new patients per year and only 18 facilities out of the 1,333 had more than 50 new patients per year.

When it comes to treating myeloma patients, volume matters. The study shows that multiple myeloma patients greatly benefited from treatment at more experienced centers. For example, patients treated at centers seeing 10 new patients per year had a 20 percent higher risk of death than those treated at centers seeing 40 new patients per year.

“Studies on cancer surgery have shown the more experience the center or practitioner has, the better the outcome,” states study author Ronald Go, M.D., a hematologist and health care delivery researcher at Mayo Clinic. “It is very difficult to be proficient when doctors are seeing only one or two new cases of multiple myeloma per year. We wanted to see if volume matters when it comes to nonsurgical treatment of rare cancers such as multiple myeloma.”

While this is the first study to investigate the volume-outcome relationship in the management of multiple myeloma, patient Gary Petersen has known this for years. Statistics like this spurred him to create a website called www.myelomasurvival.com that compares treatment centers and their outcomes. Gary says:

When I was diagnosed with multiple myeloma, I searched the internet for the best treatments and their survival rates.  I would do a Google search like “multiple myeloma survival rates,” and I would change it by putting in hospital names like Mayo, Dana Farber, M.D. Anderson, ad infinitum. The only thing that would come up were clinical trials, National Cancer Institute’s (SEER) survival rates, and some rates for Mayo and for UAMS. That was it! Having an operations engineering and business management background, I was shocked that performance based information (survival by hospital) was not available to the myeloma patient community.

A well-respected Senior Vice President of a multibillion dollar company (and my boss) once said, “You cannot manage what you do not measure!” From my operations engineering background, you use measurements to know where you are and to gauge the success of programs and improvements that you initiate. Total quality management has improved products for decades by using measurements to gauge improvement, so why not hospitals and their multiple myeloma programs?

But the real impetus was being in an IMF support group and watching people, my friends, die too soon – some of them which I knew were getting inadequate care. In addition, places like Little Rock were showing survival rates of seven years whereas the National Cancer Institute indicated an average survival of 33 months. I felt compelled to find a way to bridge the gap between the “What is (33 months)” to the “What could be (7 years)”. Yes, I was on a mission, a mission to SAVE LIFE!

In short, seeing a myeloma doctor that sees hundreds of patients can change your disease trajectory and life expectancy exponentially. For those who don’t live near a myeloma academic center, it is very common for patients to travel to see a specialist who can help direct your care. Then your local cancer center or hospital can implement that plan. This gives you access to the very best talent in myeloma without needing to travel for infusions and frequent checkups.

Take control over your outcomes and see a specialist today!

To find clinical trials that are running at myeloma academic centers, click here:

Find Myeloma Clinical Trials



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About Author

Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical trials. Founder of Myeloma Crowd, Myeloma Crowd Radio and the CrowdCare Foundation.

3 Comments

  1. While I believe in what you are saying from personal experience, by going to specialists in UAMS then coming home to do my follow up and treatments. My experience was and still is very complicated for the simple reason that doctors here with little experience in MM are not so willing to put aside their egos and follow a specialists protocol from another hospital. So the conflict here is I do not get the care that I am trying to follow and get negligent and conflicting care. Me and my wife ( my caregiver) have been fighting a losing battle at home with my doctors here. I am so distressed that I walked out on them and apparently they fired me as a patient and went as far as canceling my standing blood orders for blood work and have left me once again looking for help from another hospital with very limited care for my condition. I hope this is not a problem for everyone in my shoes. How can we address this problem??

    • Martin, wow! I’m so sorry you have to deal with that. We just attended a Myeloma Crowd Round Table meeting where myeloma expert Dr. Craig Cole said, “If you have a doctor who does not allow you to challenge his/her opinion, I would walk out of the office and find a new doctor.” It sounds like you have a challenge that you could turn into a blessing. Is there another facility where you could find an oncologist who would be willing to implement the care directed by the docs at UAMS? I think going into the first appointment with that expectation – that they are simply care administrators is probably key. If you’ve been at UAMS, you know the difference you are getting there vs. just a local oncologist. Stay strong and assertive, because you are your own best advocate.

  2. My sister Linda went to UAMS in Little Rock AR. She did as this artical wrote and survived an additional 12 1/2 years after being diagnosed.
    Linda was only 38 years old when first diagnosed…my little sister died last year…

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