Sue LoMonaco

multiple myeloma coach since 2025

I was a caregiver from my husband for two years. He had AML. I went to all of his appointments and looked up many things online just to try to find out more and to be able to ask intuitive questions. Knowledge is powerful and helps us to get through many things once we understand more about a situation.My husband also had diabetes and COPD and we needed to balance that with his treatments. I helped him as an advocate when he needed it, especially with the veterans administration. I would love to help you find the answers you are looking for. I understand the struggle with AML and I’m very happy to be a part of this organization to be able to reach out to you and help you with any of your needs from helping with a new diagnosis, to helping you understand more about the disease and to help you navigate the website to find the answers you’re looking for. Although I do not have AML I was my husband’s support system. I love to exercise, read, go to live theater and concerts, and do wine tasting dinners. I enjoy life.

Robyn Osborn

multiple myeloma coach since 2025

Hi! I was diagnosed with myeloma in June 2024, so I'm still relatively new to this myeloma game. I was diagnosed with MGUS in early 2020 and monitored for three years. By summer 2023, my MM specialist began to suspect Smoldering Myeloma, which was confirmed with a bone marrow biopsy in August 2023. At that time, he encouraged me to start MM treatment with DRVd, but I was reluctant because I had no symptoms and didn't have active MM, yet. I decided to get a second opinion, and that MM specialist recommended holding off on treatment until, and if, I developed active MM. By March 2024, I began to experience fatigue and shortness of breath, and in May 2024, a bone marrow biopsy confirmed that I now had active MM. On June 17, 2024, I started induction therapy on DRVd. About 4 cycles, my MM specialist decided I was not a good candidate for a SCT, so as a result, she had me complete 6 cycles of Induction therapy. In mid-November, I began experiencing peripheral neuropathy in my feet, which she attributed to the Velcade, so she stopped treatment. My kappa light chains and m-spike were within normal range, so she determined that I was ready to move on to maintenance. Those were the sweetest words I had heard in a while! In December 2024, I started on monthly Darzalex Faspro (Dara). Even though Revlimid is standard of care in maintenance, she decided against adding it back in due to the related side effects I had suffered during induction. So, for now, I am on maintenance with monthly Dara, with no noticeable side effects, I'm happy to add, and I also receive Zometa infusions every 3 months, which were started in July 2024. I am also happy to report that my kappa light-chains are still within normal range, and my M-Spike in April was zero!

Doug Keller

multiple myeloma 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.