I’ve just returned from MD Anderson in Houston where I facilitated a Multiple Myeloma (MM) forum put on by the Patient Empowerment Network (PEN). The program was titled “2014: Accelerating Progress in Myeloma and What it Means for You” and attended by 225 MM patients and caregivers plus another 40 folks watching live on-line.
Drs. Robert Orlowski (MD Anderson), Gareth Morgan & Faith Davies (both at the University of Arkansas) clearly explained what MM is (including MGUS and Smoldering) and its symptoms. Did you know in just the last month, ultra high risk Smoldering MM, which is asymptomatic and treated as “watch & wait” has been reclassified as actual Multiple Myeloma where patients should consider treatment? These doctors summarized current treatments as well as clinical trials for new drugs and protocols, focusing on new monoclonocal antibodies as well as future patient biology testing enabling more precise treatment recommendations for a given patient.
Later in the day, our panel of doctors was joined by a myeloma nurse practitioner, social worker, and 2 patients who all shared their thoughts on how patients can monitor and plan their treatments while living well with our cancer. We all have varying degrees of MM symptoms and treatment side effects which need to be managed by our health team, perhaps the most important member being a patient’s caregiver.
In addition to breakout meetings where patients met each other and shared experiences while asking questions, many of which were addressed by the panel, the final hour of the forum was spent answering questions from both the live and on-line audience. Sample questions included maintenance recommendations after transplants, length of bisphosphonate (aredia or zometa) usage, and the mental issues of testing every 2 months for smoldering without starting treatment. These are difficult questions without precise answers but our doctors and other panelist shared their experiences and advice.
I have no doubt (because many told me afterwards) that this program provided a wonderful education for both myeloma patients and their caregivers. As a 20-year survivor of MM myself, I am proud to be associated with PEN and help make such a program possible.
(The following is from the editor)
This meeting was the first PEN meeting that was live streamed using Zoom.us technology. I registered for the streaming and watched the Houston meeting from my couch in Charlottesville, Virginia. The audio and video were very clear. The video was so clear that many of the photos below were the result of screen shots that I took while streaming. I loved watching this meeting online. The reason is, that I have been to these meetings and I have talked to the participants. The patients and their families so enjoy the meetings and so enjoy hearing the experts speak and listening to the patient stories and the patient questions. How wonderful that now we have a chance for more patients to benefit from these meetings. Many patients live too far to attend these meetings in person. Many are homebound or too sick to travel. Live streaming the meetings will give those patients a chance to watch the event.