The second day of Pat's Myeloma Beach Party went from morning till night and was jam packed with information and fun. We started the day with early morning meditation on the beach to try out Danny Parker's suggestions from his Friday night session. It was an inspiring way to greet the day. Then, we got moving on the Myeloma Crowd Beach Walk supporting the new Myeloma Crowd Research Initiative finding solutions for high-risk myeloma. The weather was perfect - not too hot but no rain in sight as we headed out. The morning was a beautiful and leisurely walk down the beach with activities on the way including this mambo mashup...After the beach walk we enjoyed a buffet lunch while we listened to a Celgene nurse practitioner share some great resources on Myeloma Central - the new Celgene patient support site. This is a rich resource for patients and caregivers with tools that let you understand your labs, track your markers, keep a treatment calendar, learn more about eating right and coping with anxiety and depression. It also includes a glossary of terms and specific tips for those with kidney issues. After lunch we heard from the MMRF and the IMF who shared their resources. If you haven't heard about the CoMMpass study from the MMRF, you should know that it tracks markers from newly diagnosed patients and follows them through the entire treatment process to gain new insights into the biology of the disease. It's a valuable study that all newly diagnosed patients should ask their doctor about joining. One of the highlights of the weekend was Dr. Noopur Raje, MD, PhD, from Massachusetts General Hospital who participated in a Q&A and a session on the latest therapies in myeloma. She talked about the complexity of treating myeloma and the growing number of immunotherapy approaches including daratumumab, SAR, elotuzumab and new vaccines. She specializes in shutting myeloma down before it even gets started, so she reviewed when and how to treat higher risk smoldering myeloma patients. She highlighted some newer drugs now being used like ixazomib (an oral proteasome inhibitor) and ACY-1215, a KSP inhibitor. She reiterated the growing importance of continuous maintenance and the important work to not only look at the myeloma cells, but the environment in which they are growing to hit myeloma from both sides. Having her at the event to present and answer specific questions was another testimony of the importance of having a myeloma specialist on your side. Her knowledge is deep, and that level of knowledge can be a literal life-saver for patients. We were treated by a book signing (and free books!) with Dave Visel, author of The Myeloma Survival Guide, Pat Williams, author of The Mission is Remission, and Pat Killingsworth, host and author of three myeloma books including Living with Multiple Myeloma. That evening, Paul and I spoke about the new Myeloma Crowd Research Initiative (MCRI) to bring patients to the table to help find a cure. Because of the deep need for high-risk myeloma patients for whom today's drugs are not a long-term solution, we need more options! Patients are just beginning to wake up to the influence they have to help find and fund a cure. There is so much we can do and we are the most motivated group to help make it happen. To review what the MCRI has done so far: In Stage 1 we sent out calls for letters of intent for high-risk myeloma solutions to a large list of myeloma researchers. We received back 36 excellent proposals from all over the world! We are now in Stage 2, where the Scientific Advisory Board including Dr. Raje, Dr. Guido Tricot, Dr. Rafael Fonseca, Dr. Irene Ghobrial, Dr. Robert Orlowski, and Dr. Ola Landgren will help review and score the proposals. We'll post in the next few days about their top 10 which will be reviewed in great detail by the Scientific Advisory Board including Dr. Mike Thompson, the Patient Advisory Board (me, Pat, Gary Petersen and Cynthia Chmielewski) and YOU. Yes, you! Myeloma Crowd Radio will be interviewing this top 10 on the show for a series on high-risk myeloma and you will be able to call in, ask questions and "like" your favorites which will help select the final projects we will fund. Pat Williams is a myeloma survivor and Senior Vice-President of the Orlando Magic, which he helped co-found in 1987. He traded for Julius Erving, Moses Malone, Penny Hardaway, and drafted Charles Barkley and Shaquille O’Neal. In 1996, was named one of the 50 most influential people in NBA history. He is a remarkable public speaker and delighted the crowd with enduring words of truth and wisdom, giving an outstanding keynote speech during dinner about the seven principles of leadership. In a memorable and entertaining way, he described what makes a true leader:
We were lucky enough to have one of the Songs For Life musicians, Patricia Bahia, join us to sing inspiring songs about dealing with the cancer experience. She travelled all the way from sunny LA to share her upbeat pop tunes with a depth of understanding that only comes from a cancer survivor. I got brave and sang my song about my bad co-dependent relationship with my least favorite myeloma drug, I Will Say Goodbye and my new song called Tug of War, to be released soon. Songs For Life is a contest that we ran last fall. Over 78 songs were donated during the contest and a final 12 were selected. The majority of the songs are originals written by cancer survivors or family members and it's a fabulous collection. The Songs For Life 2015 album is now available for sale on iTunes and all proceeds fund myeloma research, so take a listen, get it and share it! We ended the day just right with eucalyptus and ginger bath salts for a good soak after a great day!
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of Myeloma Crowd by HealthTree and the HealthTree Foundation.