Please Subscribe to get a daily link to Pat's blog via email

Subscribe!

Your privacy is important to us. We will never spam you and keep your personal data secure.

What an amazing experience! (Part One)

Home/About Pat, Research, Tips/What an amazing experience! (Part One)

What an amazing experience! (Part One)

Wednesday I took part in a media press event at the Charles Hotel in historic Cambridge, Massachusetts, located just across the river from Boston.

Titled Surrogates or Survival: A Discussion on Endpoints in Multiple Myeloma Clinical Trials, the panel discussion  focused on the role of progression free survival (PFS) and overall survival (OS) data in real-world clinical decision making for multiple myeloma patients, the event was designed to raise multiple myeloma awareness among members of the medical media

The event was sponsored by Millennium Pharmaceuticals–makers of Velcade–and  broadcast live to 22 reporters from across the country, representing publications like CURE Magazine and Oncology News.

There were four of us involved in the discussion.  From left to right, Anne Quinn Young, Vice President of Strategic Alliances for Multiple Myeloma Research Foundation (MMRF) acted as the moderator.  Noopur Raje, M.D., hematologist, oncologist and researcher at Massachusetts General Hospital and Beth Faiman, an oncology nurse and CNP, who specializes in hematologic oncology and blood disorders with the Cleveland Clinic.

Sharing the microphone with these three extremely talented, intelligent and empathetic women was truly an amazing and memorable experience.

Basically, all we did was answer questions and “talk shop” for over an hour.

The time flew by, as reporters asked questions, which Anne skillfully wove into the discussion.

One of the co-founders of the MMRF, Anne really knew her stuff!  And her conversational, informal style helped all of us feel at ease.

To say Dr. Raje was impressive would be an understatement.  A small, soft spoken women, Dr. Raje clearly and professionally represented the views of both oncologists and researchers during the discussion.

Beth has an outgoing personality and exuded confidence.  Knowledgeable and compassionate, she was able to shed light on how oncology nurses bridge the information gap between doctor and patient.

As the only myeloma patient on the panel, I tried to wear several hats.  One was to represent newly diagnosed patients.  Another was to compare and contrast what it was like to be a more experienced patient who is wiling to share responsibility and become an active part of a health care team.  And finally, I tried to represent the views of caregivers, since none were present on the panel.

Tomorrow I will highlight some of the key points made by each of the panel participants.  It won’t be a play-by-play, but several of the insights were game changers for me–including Dr. Raje’s assertion that a cure for multiple myeloma is just around the corner.

For now, I’m just trying to recover a bit from my late night flight.  Traveling is never easy.  But I’m learning that traveling while undergoing RVD therapy can be anything but a picnic.

Feel good and keep smiling while I crash for a while!  Pat