Our enjoyed our first VIRTUAL support group meeting on April 8. These virtual meetings can inspire us to connect and be social and supportive, while we physically distance, and strive to be kind and do the best for everyone.
We had the opportunity to see each other and catch up on life as well as myeloma patient safety and the coronavirus. I think what we enjoyed most was just sharing and laughing together.
What Is Multiple Myeloma?
Multiple myeloma is a cancer of the bone marrow plasma cells — white blood cells that make antibodies. A cancerous or malignant plasma cell is called a myeloma cell. Myeloma is called “multiple” because there are frequently multiple patches or areas in bone where it grows. It can appear as both a tumor and/or an area of bone loss, and it affects the places where bone marrow is active: the hollow area within the bones of the spine, skull, pelvis, rib cage, and the areas around the shoulders and hips.
Some Myeloma Statistics
According to the American Cancer Society, more than 32,000 new cases of multiple myeloma will be diagnosed in the United States in 2020. The disease, which was at one time most common in people over the age of 65, is now also diagnosed in people in their twenties, thirties, forties, and fifties.
While myeloma is still incurable, patients are living longer than ever before, with 5+ years of relative survival for more than 50% of patients (NCI SEER data). The improved overall survival of patients is largely due to research and the development of better and more targeted myeloma treatments.
What Are Some Signs and Symptoms of Myeloma?
In 70% of patients, the most common symptoms of multiple myeloma are back or bone pain, fatigue, and recurrent or persistent infections. If you are experiencing any of the following possible symptoms, consult your physician.
· Persistent or worsening tiredness
· Recurrent unexplained infections (such as pneumonia, sinus infection, or urinary tract infection)
· Back pain or any bone pain that is persistent or recurrent
· Swelling of the extremities
· Shortness of breath
Are You Newly Diagnosed?
You are not alone. Multiple myeloma is a highly treatable disease. Many patients live long and productive lives after diagnosis. Both survival and quality of life for myeloma patients are improving steadily. Cure-focused research is also being conducted.
To seek immediate assistance, we encourage you to contact the InfoLine Coordinators at the IMF’s InfoLine at 1-800-452-CURE (2873).
For more information about myeloma, please visit the IMF website.
The International Myeloma Foundation is the leader in globally collaborative myeloma research. The IMF is charting the course to a cure, mentoring the next generation of innovative investigators, and improving lives through better care.
You are not alone. We are here to help you. Myeloma is a disease that can very often be treated successfully and many patients live long and productive lives after being diagnosed. We encourage you to learn as much as possible and to seek out the best care possible. The IMF is here to help you do that while we work towards better treatments and a cure.
Michael and Robin Tuohy started the CT Multiple Myeloma Fighters Information Group in the Spring of 2001 with the help of the International Myeloma Foundation. Michael was diagnosed with multiple myeloma in 2000 at the age of 36. Our support group was the 1st support group specifically for multiple myeloma patients in the State of CT. Myeloma patients, caregivers, family and friends are welcome to attend our meetings.
Our mission is to be an ongoing resource for information, support, shared experiences and hope for persons with multiple myeloma, their family and friends.
Our focus is to reach out to the myeloma community and empower them through education, provide support, and let them know they are not alone. Education is key in the fight against myeloma. Although we are not medical professionals, we strive to provide the most current information in myeloma treatment, clinical trials, side effects, pain management and quality of life issues by our affiliation with the International Myeloma Foundation. Patients talk about things that doctors don’t – like insurance, bills, assistance, work and how to go about life in general. Our shared experiences help each other!
If you would like to share your story please contact us. By sharing our experiences we can help each other. Knowledge is Power!