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    • Multiple Myeloma News
    • Oct 31, 2019

    Live Longer with Multiple Myeloma Because You See a Myeloma Specialist

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We’ve seen data before by the Mayo Clinic and the University of North Carolina showing that multiple myeloma patients who are seen by a myeloma specialist live longer. A new, recent study  supports these findings. 

A state cancer registry linked to public and private insurance claims was used to identify 1029 myeloma patients from 2006 – 2012. The study evaluated the difference in overall survival between:

  1. NCI-designated cancer centers
  2. Primary oncologists’ volume of patients with myeloma
  3. Patient sharing between local oncologists and myeloma specialists

 

The study found that:

  • Patients treated at an NCI Cancer Center lived longer than those who did not.
  • Patients treated at an NCI Cancer Center lived longer than those treated by low-volume and high-volume community providers.
  • No difference was seen between treatment by myeloma specialists and the highest-volume community oncologists in the ninth and tenth deciles (eg. the same approximate number of patients seen by the NCI Cancer Centers).
  • Patients treated by community oncologists had a higher risk of death regardless of patient-sharing with myeloma specialists, compared to those only treated by myeloma specialists.

 

Reasons why patients didn’t obtain treatment from NCI designated Cancer Centers included older age, governmental insurance (eg. Medicaid), not being married and increased distance from the NCI center.

 

myeloma specialist

 

There is solid evidence that patients who have multiple myeloma should be seen by a myeloma specialist, especially at diagnosis and relapse. If patients are seen in the community setting, it should be only by oncologists or hematologists who have extremely high myeloma patient volumes (as much as an NCI Cancer Center which is typically 500-2000 myeloma patients per year). Experience matters! 

About Author

Jenny A

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.

4 Comments

  1. Linda igoe November 1, 2019 at 8:26 am

    MGus is my new concern according to my blood count
    I am my own advocate
    My home is in Seattle Wa.
    I’ve seen Dr. Tanya Wahl hematologist at Swedish and Dr Libby at SCCA.
    I’m told there is nothing needed to be done at this initial stage.
    I am concerned that there may be some new findings and protocol may not know about.
    How shall I go about educating myself?

    • Jenny A
      Jenny A November 1, 2019 at 11:16 am

      Hi Linda, I’m so happy you want to educate yourself about your MGUS. Dr. Libby is an awesome myeloma doctor, so you are in good hands. I highly recommend that you join http://www.healthtree.org. This is a place where you can keep all your labs in one place, learn about myeloma and MGUS through HealthTree University (we are building a full class on MGUS) and soon you will be able to connect with other MGUS patients. Also I would recommend subscribing to the Myeloma Crowd newsletter (the orange box on the home page of http://www.myelomacrowd.org) and that will send you a weekly newsletter with all our articles. There is also a study you should join (no travel needed) run by Dr. Irene Ghobrial at Dana Farber. It is called the PCrowd study and you can send blood samples by mail when you get your labs run every 3-6 months. https://pcrowd.dana-farber.org/. You will help advance the field to know why some patients progress and others don’t to active myeloma.

  2. Kathy Kessler November 3, 2019 at 7:34 pm

    A 71 year old female, I was diagnosed as SMM in January, 2017. I was being treated for Breast Cancer and my oncologist ordered an anemia panel which revealed the M-spike. Bone marrow biopsy confirmed Smoldering MM. M-spik is .6-.9. No symptoms. I m on wait, watch & worry with the same oncologist who treated my her-2 breast cancer (dbl mastectomy & chemotherapy). Should I be seeing a MM specialist as well????

    • Jenny A
      Jenny A November 5, 2019 at 11:01 am

      Kathy, yes, you do need to find a myeloma specialist. There is a lot of discussion around how to treat smoldering myeloma. It is suggested that it only be treated in the context of a clinical trial which is more likely to be found at an academic center. Two myeloma specialists who focus on smoldering myeloma including Dr. Ola Landgren from MSKCC and Irene Ghobrial who is at Dana Farber. She has a study you should consider joining called PCrowd. https://pcrowd.dana-farber.org/. If you want to take a look at clinical trials or in the future find other smoldering myeloma patients in similar situations, you can join http://www.healthtree.org. This is a tool we created to help patients at every step of their SMM or myeloma. It will also help you keep track of the important things about your SMM. It also contains a specialist directory with more MM doctors. Please check it out.

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