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It makes a difference how and where myeloma patients are treated

Posted on January 11 2014 by Pat Killingsworth | 783 views

Fellow Floridian and myeloma survivor, Gary Petersen, hosts a website, MyelomaSurvival.com.  On it, Gary stresses how important it is to be treated somewhere that specializes in multiple myeloma.  In a feature article that ran on MedPage Today after ASH last month, myeloma specialist, Dr. Noopur Raje, agrees:

“What it really tells me is that some of [survival may have] to do with access to drugs and access to therapies,” she said. Access to the latest treatments is more likely at academic centers, she noted.

The clinical implication for patients is that “if you have a center which focuses on this disease, go to that site,” she said.

I personally know and respect Dr. Raje, who splits time as a researcher and clinician at the Massachusetts General Hospital Cancer Center in Boston.

Dr. Raje is quoted at the end of the article; I’m going to reproduce it below.  But be warned.  MedPage Today’s Michael Smith doesn’t sugar coat anything when referring to overall survival rates:

Tx, Transplant Predict Multiple Myeloma Survival

Published: Dec 12, 2013 | Updated: Dec 13, 2013

6 Comments For This Post

  1. CathyS Says:

    But isn’t a lot of that info sort of old? I mean, someone diagnosed is 1998 did not have near the options of someone diagnosed in 2012, for example. Just wondering why this is meaningful to us in the novel agent era.

  2. Pat Killingsworth Says:

    Great point, Cathy! Stats like these are always lagging indicators. But I will caution you; I read about and hear from family members of patients that have died darn near everyday. Not unusual for them to only live three years or so. We comfort ourselves by thinking like you are. I still believe its pretty special for us to live ten years. Although you’re right; there should be more and more of us living longer.

  3. Brian Helstien Says:

    Pat,
    “There are liars, damned liars and statisticians.” I’m not trying to be a pollyanna, but those stats miss some major issues. There are of course high risk myeloma patients mixed with this.

    It should be noted that OS seems to be based upon a diagnosis date. Men statistically tend not to see a doctor with the identical symptoms that would have moved a woman to visit a doctor, resulting in a later diagnosis and a more advanced disease (in, as is noted above, more than 1/2 the patients).

    And finally, it should be noted that as Gary’s site points out, who/where is doing the treatment can make a huge difference. Patient education/involvement in their treatment (as you are involved in your treatment) will make a statistical variance from those who merely try to follow doctor’s orders. Note that study I referenced in your earlier post about those involved in support groups.

    You know, I can make a categorical statistical statement that 100% of those born in the year 1500 have died. The next study needs to “tease out” more discrete demographic data to really be useful.

  4. Pat Killingsworth Says:

    Agreed!

  5. Gary Petersen Says:

    Pat, I missed this post somehow, but find it a very interesting read. I think you bring up some great points, and Brian and Cathy as well. The data is older, and even Thalamid was not approved for first line treatment until May of 2006, Velcade in 2008, so the data does not reflect the total effect of these new agents, however some centers were using these drugs. Mayo gave me Thalamid as first line treatment in February of 2006 and UAMS gave me Velcade in June of 2006. In addition, UAMS used Thalamid in 1998 as part of TT2. Right now a lot of people are getting Pom and Kypolis as first line clinical trials at some of the best institutions. Sometimes it is who you know!

    They state the median overall survival of 27.6 months, whereas recent data would be much better than that. The relative survival is 48 months in the 2007 SEER data. But OS includes all deaths and Relative Survival excludes non myeloma deaths. So unfortunately, not apples to apples.

    If you look at where all the best doctors are located, it just so happens that most are at the academic institutions, so it might just be another chicken or the egg, or both question.

    Best Regards and great work Pat/ Gary Petersen

  6. Pat Killingsworth Says:

    Thanks, Gary! Wasn’t aware of the term “relative survival.” Good to know!

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  1. Cancer Specialists SAVE LIFE –  The Evidence Continues to Mount! | Cure Talk Says:

    […] chicken or the egg, or both, question.  You can read Pat’s entire article if your CLICK HERE.  In the article, Dr. Raji also goes into more detail into the surprising advantage of early […]

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