I attended a Florida Educational Advocacy Group event last evening at Moffitt Cancer Center in Tampa. The topic: New Treatment Options for Multiple Myeloma.
Since I’m just completing a new book on the subject, I felt it was important to attend.
I rode down and back with JaneClare and Walt, a fun couple I know from our Nature Coast Multiple Myeloma Support Group.
We arrived early enough to tour Moffitt’s BMT Center on the 4th floor of the main building. It was nice not being rushed for a change, and it also gave me an opportunity to visit with others who were there for the program.
Researcher and clinician, Dr. Ken Shain, opened the program and spoke for 30 minutes or so. I counted over 170 attendees.
Considering he is an Associate Professor of Medicine in the hematology department, Dr. Shain was surprisingly easy to follow.
Nothing new here, except to note how wonderful it was to see so many patients and caregivers on the road to becoming well educated patients.
At age 56, I was certainly one of the youngest patients in attendance.
Dr. Shain spent quite a bit of time focusing on clinical trials. Not surprising, since he is in part a researcher. Dr. Shane closed by reinforcing one of the points I made a few days back in a post about clinical trials: “The more patients who participate, the more quickly researchers can move these new drugs forward.” He stressed.
Dr. Shain sounded encouraged about recent carfilzomib/Revlimid/dex combo studies and Millennium’s MLN9708, the new oral protease inhibitor.
He also covered pomalidomide’s progress in relapsed and refractory patients.
Like most myeloma experts, Dr. Shain was very excited about the new anti-myeloma antibodies Elotuzumab and BT062.
After Dr. Shain completed his rather brief introduction to myeloma therapies, the group broke-down into three different groups.
My doctor, Melissa Alsina, spoke in one room and Dr. Shain in another.
I chose to attend a group led by the third myeloma specialist from the Moffitt Cancer Center team, Dr. Rachid Baz. One of three primary myeloma specialists at Moffitt, I had never met Dr. Baz and was curious about what he had to say.
Turns-out we agreed on just about everything, especially how an auto stem cell transplant recipient should approach maintenance therapy post SCT. “Yes.” Dr. Baz said. “High risk patients should stay on regular maintenance following a transplant.” But Dr. Baz went on to explain how he supported the choice of taking a drug free holiday and skipping maintenance for others who are able to achieve a complete response–at least until studies can prove that there is a significant survival benefit by doing otherwise.
I did overhear several comments made by attending patients and caregivers last night that really got my journalistic wheels turning. I spent much of my time observing those who eagerly attended the program. In many cases, you could instantly pick the newly diagnosed patients and caregivers out of the crowd just by watching their facial expressions, and focusing on the “deer in the headlights” look I remember so well.
I spoke with and interviewed several patients and caregivers before, during and after the presentation. I’m going to share some of my thoughts and observations about who attended–and why–later this week.
But tomorrow I’m going to update everyone about how I have been feeling–and the news isn’t all good.
Until then, feel good and keep smiling! Pat