By Jack Aiello
San Francisco/Greater Bay Area, CA

Today is actually the day before the 56th American Society of Hematology (ASH) Annual Meeting officially begins, often called “Symposium” day where many of the cancer advocacy organizations hold 3-hour panel meetings on treatment practices for attending clinicians. More about this later.

My first meeting of the day was a gathering of the National Cancer Institute (NCI) Myeloma Steering Committee. I’m privileged, along with myeloma patient Jim Omel, to serve on this distinguished committee of 30 myeloma specialists in a Patient Advocacy role. The NCI-MYSC works with national Cancer Network Groups (SWOG, Alliance, ECOG) to develop and approve clinical trials for myeloma. We have monthly phone calls but this was the first time I’ve been involved in a face-to-face meeting, which I found extremely valuable. Today’s agenda items included discussions about a possible new large clinical trial format for myeloma that identifies a patient’s myeloma mutation (e.g. BRAF) and places that patient in a sub-trial of a drug known to be effective against that specific mutation. We also discussed the incorporation of minimal residual disease (MRD) into trials. Finally our meeting concluded with important areas of investigation over the next few years, including monoclonal antibodies/immunotherapies and oral therapies as well as development of future trials to replace ones that will finish accruing.

After this meeting was over, I watched Andrew Shorr (of Patient Power) introduce Jim Omel, who interviewed Dr. Paul Richardson (Dana-Farber Cancer Institute) on debunking myths of clinical trials (e.g. you’re not a “guinea pig,” understanding placebos and more). Andrew will edit and publish on in the future.

Next I attended the International Myeloma Foundation (IMF) Symposium titled Critical Issues Need Answers: Providing the Best Options for MM Treatment in 2014. I estimate that 800-1000 in attendance watched Dr. Brian Durie (IMF) moderate a panel of Drs. Shaji Kumar (Mayo Clinic), Ola Landgren (Memorial Sloan Kettering Cancer Center), Bruno Paiva (University of Navarra, Pamplona, Spain), Antonio Palumbo (University of Torino, Torino, Italy) and Vincent Rajkumar (Mayo Clinic) who paired off and took yes/no stands on 4 questions: 1) Therapy for High Risk Smoldering Myeloma? 2) MRD as a Treatment Guide? 3) Continuous Treatment for Myeloma? and 4) Therapy Treatment for Relapsed/Refractory Myeloma?

The discussions were provocative but I’d say in most cases the recommendations encouraged participation in clinical trials (e.g. for high risk SMM, MRD) where more information is needed. The panel and audience definitely leaned towards continuous therapy (if a patient is maintaining good qualify of life) and a new drug regimen carfilzomib-pomalidomide-dex for relapsed/refractory patients who need to be “salvaged.”

Finally, several patients (including myself) and caregivers were invited to attend a presentation by Celgene (manufacturer of Revlimid (lenalidomide), Pomalyst (pomalidomide), and Thaomid (thalidomide)). They reviewed current and future clinical trials while asking for our feedback and ideas. When drug costs were mentioned, they encouraged folks to check out Celgene’s patient assist program which really can help many patients with out-of-pocket costs and, for whatever reason, is under-utilized. I was quite pleased they offered this forum to listen to patients.

That’s it for today. Tomorrow’s first meeting starts at 7:30 am so it’s time to wrap up this report.

Wishing you best of health. Jack Aiello

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