Mary Sage

multiple myeloma coach since 2020

Let's Chat! One time or more, I am here for you at whatever level needed. I enjoy texting and email and if desired a phone call or we can set up a FaceTime call. Mary Sage lives with her husband Michael who is her primary caregiver and is also himself a coach, her adult son Raymond, who is a secondary caregiver in the home, and 2 dogs, Stella and Jake. She lives in the Pacific Northwest region on an island accessible only by a ferry. She was diagnosed with Stage 2 IgG Lambda in November 2015 and placed on immediate disability due to spinal fractures, severe pain, and limited mobility. Like many others, prior to diagnosis, she experienced years of bizarre blood results and chronic back pain that was becoming increasingly debilitating. Mary had a stem cell harvest in 2016 and a stem cell transplant in 2019 and received 2 years of a strong response until her second relapse. In the past year she has become non-secretory, so her team uses new pain levels or increased pain levels to indicate tests that need to be run. PET scan and BMB are the primary tests used to track changes to her MM. Mary has been on 5 different protocols and treatments, has become refractory to 2 treatments and her record for using any one protocol seems to be 2 years then a change is investigated. Currently, her bloodwork shows standard risk MM; her MRD is positive with 5 parts per million. Her present maintenance treatment is Pomalyst (May, 2022). After 1 year on KPd, Mary's MM markers are now in range and she is able to say she is in a clinical remission - this is her year to move about more freely (although still cautiously) and enjoy a few more activities not afforded when her blood work showed progression. Mary is also trained in Hospice and grief support (since 2004). Mary welcomes any who might need Hospice Support for their journey or their loved ones. This work is done remotely and can include FaceTime or phone calls or any other modality as needed/desired. It is an honor to walk this journey with you during this challenging time.

Laurie C

multiple myeloma coach since 2023

I am a 60 year old female who was diagnosed with high risk [t(4,14)] IgG Lambda light chain Multiple Myeloma on Nov 1, 2021 after a tumor in my spine cracked my T4. I had 4 cycles of KRd, then an autologous stem cell transplant mid June 2022. I resumed treatment September '22: on Revlimid 10 mg daily and Velcade 100 mg 2 x per month. I am just changing to Revlimid 5 mg + Velcade 2x monthly due to bad headaches and blurry vision. I also got shots of Xgeva once every 3 months for bone strength, this is now being changed to every month. I can talk to people about life hacks for a successful autologous stem cell transplant. I can talk about what I've read about high risk MM. I can talk about the importance of managing your bone strengthener properly and what happens if your doctor forget a dose. I read all of the Myeloma Research that I can find. I am still working. I would like to bring kindness and support to the lives of those diagnosed with Myeloma. WAYS I CAN BE HELPFUL: tips on having a great bone marrow transplant; how to prepare questions to discuss with your doctor, how to help yourself heal through diet, music, exercise, reading and love. Understanding blood test changes. I can support patients in English and in French. I read alot about new CAR T therapies and related clinical trials for my work. Please write me! My email is HEALINGMYELOMA@GMAIL.com I AM NOT THE BEST RESOURCE FOR: discussing issues related to end of life, grief management, palliative care, prognosis, etc. I am not knowledgeable about anything related to insurance issues and or the health insurance appeal process. healingmyeloma@gmail.com IS MY EMAIL healingmyeloma.blogspot.com IS MY BLOG I love coaching, so please reach out. Wishing peace and love to all.

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.