Dana-Farber Cancer Institute is taking a fascinating approach to multiple myeloma. They want to shut it down before it even gets started. In 2014 they began a new initiative called the Center for Prevention of Progression of Blood Cancers (CPOP). At this center, they look at early conditions like MGUS and smoldering myeloma to learn why some people progress to myeloma and others don't. Stopping myeloma before it grows legs could potentially cure thousands.
The project is a tissue bank that follows patients from the beginning of their diagnosis at early stages. They aim to develop targeted therapeutic agents that can eliminate the early clones of disease. Some of the blood cancer precursor conditions being studied as part of this protocol are monoclonal gammopathy of undetermined significance (MGUS), Smoldering Multiple Myeloma (SMM) or Smoldering Waldenström Macroglobulinemia, Early Myelodysplastic Syndrome (MDS), Monoclonal B-Cell Lymphocytosis, and Myeloproliferative Neoplasms (MPN). With a large database, they will be able to better understand who will progress and who will not, and what treatments may be the best for which patients depending on their molecular profiles. Dr. Irene Ghobrial, MD, PhD explains more about the program on Myeloma Crowd Radio.
Dana Holmes is a smoldering myeloma patient and is a strong patient advocate, creating a Smoldering Myeloma Facebook group (only for those with a confirmed diagnosis of Smoldering Asymptomatic Myeloma who are "treatment naive" or enrolled in early treatment intervention clinical trials for High Risk Smoldering Myeloma) as well as specific initiatives, like the Mambo for Myeloma. She is an enthusiastic participant in this program. Dana says:
Many of us with either an MGUS or Smoldering Myeloma diagnosis are under close monitoring and nothing else. The early precursor stages of myeloma do not include treatment as a standard of care. There are many reasons for this, primarily, the potential toxicity of the standard of care anti-myeloma treatment regimes. This diagnosis really does cast you into a trifecta role of "watchful waiting with worry." Many of us ask "what exactly are we waiting for?" and feel defenseless. Yes, there are indeed early treatment clinical trials available for those with high risk smoldering myeloma but you do need to meet very specific criteria to be eligible. And for those of us who don't qualify, we get to just watch, wait and worry. I have been told that worry is useless and serves no purpose in the bigger picture of actually being diagnosed with myeloma. Although I fully understand this and agree in a practical sense, it is relative and nevertheless, the worry remains. Becoming an informed patient during the precursor stages is immensely helpful. Being under the care of a top notch Multiple Myeloma Expert is another way to dispel more of the worry. BUT, DOING something which will empower you takes it to another level! Many of us wonder if they are or have been studying Smoldering Myeloma and MGUS prospectively and the answer is YES ! We can now join the P-Crowd Study at the Dana Farber Cancer Institute Blood Cancer Prevention of Progression Clinic (BCPC) and become part of the future solution! It is currently open to patients in the U.S. Many of the members in both my SMM and MGUS Facebook groups are already participating. The PCrowd Study is a prospective study trying to unravel the unknown of why some of those with the precursor stages of MGUS and smoldering myeloma are more likely to progress to active disease than others. The goal would be to someday find a way to prevent actual progression. It is a an easy study to participate in, we are asked to send in samples of either our serum or bone marrow biopsies. This is a GREAT way to help make a difference in understanding SMM and MGUS better, a biopsy tissue sample or a blood sample is all it takes. I have "donated" both. This honestly could not be an easier process to participate in what will likely produce invaluable data for the advancement of unraveling the mystery of multiple myeloma in the precursor stages. It is so simple, you collect the samples during your normally scheduled lab tests and appointments, and mail the samples to the Clinic in Boston in a prepaid express envelope! It is just so easy to participate and enroll BUT so very important to help move research forward. These brilliant researchers need OUR help and participation, I know I want them to be able to unravel this confounding puzzle. Think of it as your chance to make a real difference while you watch and wait...and of course worry! Carpe Diem !!
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 HealthTree Foundation (formerly Myeloma Crowd).