The Myeloma Crowd is a patient-driven initiative to help educate and support multiple myeloma patients.The goal is to simplify complex information and arm patients with important and current information about myeloma in order to help them obtain optimal outcomes.
The Myeloma Crowd and CrowdCare Foundation were created by myeloma patient Jenny Ahlstrom. The Myeloma Crowd now features a wealth of content contributed by other myeloma survivors including Lizzy Smith, Gary Petersen and other patient contributors.
Myeloma Crowd recently interviewed my doctor, Dr Berenson, to talk about myeloma, his treatment philosphy, and an important new test, BCMA, for tracking patients and potential outcomes.The interview is about an hour long, but is absolutely worth a listen. Berenson takes a different path than other myeloma specialists and his positive results in treating patients is among the best.Gary Peterson is a myeloma patient and maintains a terrific website that tracks survival rates for myeloma specialist and hospitals. Here is a link to his website.
With regard to this interview, multiple myeloma is typically tracked by measuring the M-protein, also called the "M-spike." But in some patients, the M-protein gets lost, making it difficult if not impossible to detect myeloma levels without a bone marrow biopsy. Dr. James R. Berenson, MD of the Institute for Myeloma & Bone Cancer Research has been working on a new test (assay) and has found direct correlations between levels of BCMA and the M-spike. He also has identified new clues that BCMA levels can provide related to outcomes within specific patient populations. Learn more in this show about a new and potentially easier way to detect myeloma, which would be incredibly valuable for the non-secretor. (Note I don't have an M-spike and I am kidney impaired, so each visit to Berenson I give research blood for BCMA tracking. I'm currently on his maintenance regimen which he discusses towards the end of the interview)