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    • Next on Myeloma Crowd Radio
    • Aug 30, 2019

    Our Next Show: An Update on the World’s Largest Myeloma Screening Study with Irene Ghobrial, MD, Dana Farber Cancer Institute, Wednesday, Sept 4 @ 1 pm Eastern

Wednesday, September 4, 2019 @ 10 am Pacific, 11 am Mountain, Noon Central, 1 pm Eastern

Call In by Phone to Listen Live: (347) 637-2631 or Listen Live Via Computer

Irene Ghobrial, MD of the Dana Farber Cancer Institute and Ivan Borrello, MD of Johns Hopkins are leading the largest study on precursor myeloma conditions that will include 50,000 patients and family members. The goal of the study is to detect myeloma early and see why and how patients who have MGUS and smoldering myeloma progress to active myeloma. The study is also seeking to understand the genetic, molecular and immune factors that lead to disease progression with the hope that this knowledge could stop disease progression and improve survival with effective strategies.

If you are African American or family member of a myeloma patient between the ages of 45-75, it’s time to join this important study, which requires no travel. These two groups are involved in the study because they are more likely to develop into active myeloma. The Dream Team will study this group in an effort to define biological characteristics that will help to identify which patients will benefit from particular therapies. These biological characteristics include inherited mutations, acquired mutations, and immune factors. The Dream Team will also identify lifestyle and demographic factors that contribute to disease progression, such as obesity and race.

The PROMISE study is funded by Stand Up To Cancer, who has provided a $10 million award to the Myeloma Stand Up To Cancer Dream Team focused on revolutionizing the treatment of multiple myeloma through detection of early conditions before they turn into full-blown disease. Learn more about how you and your family members can join!

Thank you to our episode sponsor, Karyopharm Therapeutics. 

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.

17 Comments

  1. Wayne Graff August 31, 2019 at 3:46 pm

    I’m interested in anything about Myeloma and hearing from those who have it too.
    I was diagnosed in December of 2016 and had a transplant at Mayo Clinic in May of 2017. I still take chemo injections every other week and have done so for 2 years now. I feel fairly well but probably I’m more fatigued than usual and still have slight nueropathy in my toes and right foot yet. Went into depression quite a while ago but taking meds these days and feel much better.

  2. Linda Evans August 31, 2019 at 6:33 pm

    I would like to join the study. I was diagnosed with smoldering multiple myeloma in July 2017. I am 70 years old.

    • Jenny A
      Jenny A September 3, 2019 at 11:01 pm

      Linda, your family members will want to join this study. As a smoldering myeloma patient, you personally will join this study: : https://pcrowd.dana-farber.org/. You don’t need to travel to join the study.

  3. Nancy DePaoli August 31, 2019 at 8:33 pm

    I am interested in the study.

    • Jenny A
      Jenny A September 3, 2019 at 11:02 pm

      Nancy, we hope you will listen in to learn more!

  4. Marjie Wood August 31, 2019 at 11:58 pm

    Hi,
    I have had MGUS since 2005 and am being seen by an oncologist/hematologist twice a year as my numbers are steadily increasing. Is there a way to find out if someone with MGUS could participate in any of the trials? Thanks so much

  5. Bonnie Jean Oestreich September 1, 2019 at 5:59 am

    I have SMM. The Assent trial involves 4 drugs which seems like a lot of side affects to deal with. Thst is the only one Froedtert hospital in Wisconsin is offering. How do you find out if there are other trials close to your home. Thank you

    • Jenny A
      Jenny A September 3, 2019 at 10:55 pm

      Bonnie Jean, if you join the tool we created called HealthTree, you can see all clinical trials you are eligible to join and trials that are close to you. You can find it at http://www.healthtree.org.

  6. Jann Seal September 1, 2019 at 12:04 pm

    If the hurricane is gone and we have power I’ll tune in. Very interested. Age:72. Diagnosed with monoclonal gammopathy in 2012 while living in Wales, UK. Now back in US and doing well with good numbers for my MM.

    • Jenny A
      Jenny A September 3, 2019 at 11:10 pm

      Hope you can join us! Glad you are doing well.

  7. Brenda September 2, 2019 at 11:19 pm

    My mother 58 -60 her 1st cousin 57 and her brother65- 67all died of myeloma. Between ages of 57to 67 .All pass between 1996 to 2000. Have you every study RH factor? My mother brother and cousin rh negative I would very much like to be kept in the knowledge of this awful disease. I am 58 little worried RH neg.

    • Jenny A
      Jenny A September 3, 2019 at 11:09 pm

      Brenda, this is a very interesting idea and we have not studied RH factors, but this is something that HealthTree (a tool we built for myeloma patients) could easily do. It is uncommon to see so many cases of myeloma in the same family. You can do more research on RH factors in myeloma by typing “google scholar” in a browser and then searching on “RH factor multiple myeloma.” Please share what you learn.

  8. Cynthia Blair September 3, 2019 at 4:59 pm

    My boyfriend has multiple myeloma in the smoldering stage. He’s been in this stage for 2.5 years. His name is Paul Addis he’s 63. It’s hard living with a potential time bomb. As of now his Dr. is giving him nothing.

  9. Ruth September 4, 2019 at 11:39 am

    Please let me know when your next show will be.
    Thank you

    • Jenny A
      Jenny A September 5, 2019 at 5:51 pm

      Ruth, if you subscribe to the newsletter (see the orange box on the home page), you will be sent an email weekly that will tell you about our upcoming shows. Hope that helps! Jenny

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