Myeloma is the second most common blood cancer after Non-Hodgkin’s lymphoma. Dr. P. Hari, chief of hematology and oncology at the medical college of Wisconsin says myeloma is a cancer of the bone marrow. Since bone marrow makes a whole lot of blood it is called a blood cancer. It is a common disease. It is twice as common in African Americans and it is generally more common in older people. About 50% of the patients are above the age of 70.
He says it is a disease they can control fairly quickly in the majority of patients. They get patients in what they call remissions but their ability to control those remissions into cures where the patients don’t need any other treatments are and basically free of myeloma the rest of their life; that ability is very limited so they still consider myeloma an incurable cancer. Dr. Hari says that means patients can relapse over the course of time, so they always need new drugs with new drugs mechanisms of actions and that is why this new drug XPOVIO is a big deal. Any new drug with a new mechanism action is something that is exciting for people living with myeloma and people like him who treat myeloma.
Jenny Alhstrom, multiple myeloma patient advocate started a non-profit website as a community for other myeloma patients to come together. She says she was diagnosed in 2010. She wanted to find an online Myeloma specialist directory, so they built that as part of the myeloma crowd. You can find that on myelomacrowd.org. She goes on to say now they have provided educational services, a suite of resources and they built something that is really unique, a website where patients can contribute their information, even their whole myeloma experience, their labs, their genetic, therapies, their outcomes and they can look at real world evidence that can help investigators like Dr. Hari come to faster and better solutions for them.