BY DANA HOLMES Asymptomatic "Smoldering" Myeloma has been gaining much more attention in the Myeloma Community in recent months. The Multiple Myeloma Specialists have been trying to unravel some of the long standing gray zone. The more knowledge we acquire while we smolder, the better armed we will be should we find ourselves facing progression and treatment decisions. Here are two recent videos produced by Andrew Schorr and the staff of Patient Power Network which focus primarily on the topic of Smoldering Myeloma. He states "As some people know, the hot issue is all about smoldering myeloma." First up is an interview with Dr. Robert Z. Orlowski, Director of Lymphoma & Myeloma Center at MD Anderson, Houston, TX. HOW SHOULD SMOLDERING MYELOMA BE CLASSIFIED SO I GET THE RIGHT TREATMENT? Dr. Orlowski delivers a very important message,
"The most important thing, I would say, is to make sure they consult a myeloma expert in addition to their local hematology/oncology physician. Because this is an area that is changing, and you want to make sure you talk to somebody who is up to date."
Next, Dr. Ola Landgren, Chief of Multiple Myeloma Service at Memorial Sloan Kettering Cancer Center in New York City speaks about HIGH RISK SMOLDERING MYELOMA: DEFINING IT AND MOVING FORWARD. Dr. Landgren shares the following,
"I tried to emphasize the fact that most of those studies that talk about high risk, they are retrospective small studies, and there are really no comprehensive studies between these different models. I think that’s problematic from where we are right now. If we assign an individual patient as being high risk by one model, we know for sure that that is high risk by another model. The reason I think that it is important is because if you’re going to treat high-risk smoldering myeloma, we want to make sure that person actually is at high risk of transforming disease. We don’t want to overtreat people who have more MGUS-like disease". Dr. Landgren also discusses his early treatment clinical trials and the promising results.Dr. Edward Libby
, Myeloma Specialist, Seattle Cancer Care Alliance, Fred Hutchinson Cancer Research Center, Seattle, WA, was interviewed after attending the December, 2013 ASH meeting. Dr. Libby discusses emerging Myeloma treatments as well as potentially treating a subgroup of those with High Risk Smoldering Myeloma, but not quite ready for "prime time" - WHAT COULD BE NEXT IN TREATING MYELOMA? And finally a video from 2012, UNDERSTANDING A MULTIPLE MYELOMA DIAGNOSIS, with Dr. Noopur Raje, Director, Center of Multiple Myeloma at Massachusetts General Hospital Cancer Center, Boston, MA and Dr. William Bensinger, Director, Autologous Bone Marrow Transplant Program, Seattle Cancer Care Alliance, Fred Hutchinson Cancer Research Center, Seattle, WA who discuss active Myeloma and the precursor states of MGUS and Smoldering Myeloma. Be sure to also listen to mPatient Myeloma Radio Interviews as Jenny always asks the experts about Smoldering Myeloma. These top experts have all shared their thoughts and knowledge about emerging data and treatments in the pipeline. Don't let the angst of this diagnosis prevent you from becoming a more informed MYELOMA CONSUMER. BECOME INFORMED ! One of my fellow smolderers, BCC, shared the following wise words after finally getting to the right diagnosis.
"If there is anything I would urge all of us to do.....It is follow your gut, ask too many questions, and never apologize for pushing for answers! We know our bodies better than anyone else and, as we know, no disease is exactly the same in every person.....being tenacious, a wee bit neurotic, and even a little obnoxious could save your life! Be well friends!!"
LEARN what you can, be PROACTIVE, become a SELF-ADVOCATE and keep the HOPE of emerging treatments in the forefront for just the right balance. And BE SURE to consult with a Multiple Myeloma Expert Specialist, or even two ! Do whatever you can to stay ahead. Andrew Schorr signs off from his videos with the statement "Remember, Knowledge can be the best medicine of all". Knowledge has alleviated some of my fears about this gray zone. I hope it will do the same for each of you.
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.