The Indiana Myeloma Registry
WHAT IS CANCER?WHAT IS MULTIPLE MYELOMA?WHAT IS THE STUDY ABOUT?What is cancer?Each cell in your body holds a copy of your DNA. This DNA tells your cells how to do their jobs, like when to copy themselves and when to delete. Your cells copy and delete all the time. This is normal and healthy.Sometimes during the copying process, a mutation (like a typo) happens in the DNA that your body can't correct. Your cells may begin losing their ability to do their normal jobs, copying too often, and taking up too much space. This is cancer.Multiple Myeloma is cancer of the plasma cellsPlasma cells are a type of white blood cell that help fight infections by making antibodies. They are created in the bone marrow.As the mutated plasma cells grow out of control, they take over the bone marrow, leaving less space for red blood cells. This leads to a condition called anemia, which is when the blood doesn't have enough red blood cells. Red blood cells carry oxygen through the body. Without enough red blood cells, the body can't get enough oxygen.The mutated plasma cells also may take over the bone,causing pain and bone fractures. As the bone breaks down, calcium leaks into the blood. High calcium in the blood is called hypercalcemia.Mutated plasma cells make an abnormal antibody called M-protein (monoclonal protein), which can cause blockages in the kidneys. This can lead to kidney dysfunction and failure.Multiple Myeloma happens over time, usually several years. At the early stages, it is called MGUS.As more and more plasma cells get mutations, it develops into a stage called Smoldering Myeloma.Active Multiple Myeloma is diagnosed when one or more of the main symptoms (called CRAB symptoms) start to develop. These symptoms are hypercalcemia, renal (kidney) dysfunction, anemia, and bone disease.There's still a lot we don't know about Multiple Myeloma. That's why research is so important.The Indiana Myeloma Registry is a study to better understand:Who is most likely to get Multiple Myeloma?What treatments work for which people?What causes Multiple Myeloma?We hope to improve treatment and, one day, find a cure.If you have Multiple Myeloma, MGUS, Smoldering Myeloma, or other plasma cell disorder, please consider joining the study.Study PartsSALIVA SAMPLEHEALTH HISTORY QUESTIONNAIREQUALITY OF LIFE QUESTIONNAIREAPPROVAL TO LINK TO YOUR MEDICAL RECORDWe'll mail you a kit!One time: online or by phoneEvery 3-12 months: online or by phoneSo we can follow how your treatments go without you doing extra work!Study EligibilityYou are eligible if these things are true about you:You are a male or female patient age 18 or older at the time of informed consentYou have been diagnosed with or are suspected to have one of the following:Monoclonal Gammopathy of Undetermined Significance (MGUS)Smoldering Multiple MyelomaMultiple MyelomaBony or Soft Tissue PlasmacytomaPrimary AmyloidosisPlasma Cell LeukemiaOther Plasma Cell Dyscrasias (including but not limited to light chain deposition disease, monoclonal gammopathy of renal significance, POEMS syndrome)you have questions about the study, email myeloma@iu.edu or call 317.278.0808.Click here to sign up