Susana Vivares

follicular lymphoma coach since 2023

I was diagnosed with smoldering multiple myeloma in 2019. After much reading and research, I decided to go for ASCT on 10/2022; all went well. Currently, I am under maintenance with Pomalyst low dose. I continue to educate myself about everything concerning MM. It is an endless task, but one I embrace with optimism because of all the medical progress in treating MM.

Lori Russell

follicular lymphoma coach since 2024

Hi, I was diagnosed with myeloma in 2018 at the age of 49. What a surprise! I have what? Melanoma? Mesothelioma? To be honest, it took me an 8 day hospital stay to fully understand that I had multiple myeloma and what that meant. I was a highly anemic 49 year old female with a bad back. My doctor was not looking for blood cancer. She ordered an x-ray of my spine so that she could refer me to an orthopedic specialist. The x-ray showed many lesions and a cluster of tumors. No wonder I was swearing like a sailor every time I tried to get out of bed. I could not tie my own shoes, brush my hair, or drive. After full body x-rays and blood work, treatments began immediately. Radiation on my back and leg. Turns out my left femur was almost decimated. I had no idea. I became the proud owner of a titanium rod, hip to knee. After 6 months of radiation and chemo, I underwent a successful autologus stem cell transplant. I just passed my 4 year transplant anniversary. I'm doing well on a maintenance drug. I work full time as an University Administrator, walk 2-3 miles a day, ride my bike, and have found a fondness for chair yoga. I am married with 2 sons and 3 grandchildren. My family is a blessing. I am a faith filled person who never walks alone.

Doug Keller

follicular lymphoma coach since 2021

I was diagnosed in 2012 after I fell at my son's college graduation and broke my arm, which had a plasmacytoma in it. After radiation and induction therapy I had a stem cell transplant in 2013. Subsequently I was on various combinations of Revlimid, Elotuzumab, Daratumumab, Pomalyst, Kyprolis, and dexamethasone. I tried a clinical trial that was not successful for me and then had another SCT in 2020. After a year I relapsed again and had Carvykti CAR-T therapy in June, 2022. I was in remission for the first time, and stayed in remission for 28 months. Since relapsing in late 2024 I've been on bispecific antibodies, first teclistamab (Tecvayli) and now talquetamab (Talvey), with mixed success. I worked for 22 years in pharmaceutical research and was involved in the development of Sarclisa, which was personally very satisfying. I retired in January 2021. My wife is happy to have me doing things around the house and showing less stress. She has been a rock of support during this whole process, and my two sons are also very supportive. My quality of life is very good, and I have been enjoying getting back on the golf course now that I have time to play. I am also informally mentoring friends who have smoldering myeloma. In 2022 I had Carvykti CAR-T and went into remission for 28 months. I went back on treatment with teclistamab, which didn't work, and now talquetamab. Talquetamab alone didn't work, but in combination with lenalidomide it worked extremely well.