Laurie C

lymphoma 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.

Tracy Kummer

lymphoma coach since 2025

I was diagnosed with IgA Kappa MM November 2018 at age 48 after a rib fracture, fatigue and shortness of breath that became evident during my normal exercise routines. I was floored! I was an otherwise healthy, active mom of 4 late teen/early 20 year old kids, teaching yoga and working as a physical therapist. My whole life, my families' whole life changed. My history with myeloma includes an ASCT 4/2019 and treatment consisting of Revlamid, velcade and dexamethasone. My husband and I became vegan and I continued working part time, really focusing on my health. I achieved MRD- status that only lasted 15 mo and therefore my disease was classified as “high risk”. At this time My specialist recommended a clinical trial, hoping I would get the CART arm, but alas, I was placed into the second arm of the trial which was DaraPomdex. Since my disease had quickly gotten out of control, I realized I needed to ramp up my commitment to my health and I removed alcohol from my regime (which I really needed to do anyway) and reducing stress. I “retired” from PT, became a life coach and my hubby and I started traveling. Fortunately, I have almost 5 years of complete remission. I am looking to coach others not only to share what I've learned, but to also give the support only connection from someone who is going through this will know. Lucky for me I had an extremely supportive husband, but I still felt like I was missing the support of people in my situation. For me, FaceBook and support groups didn't cut it. I wanted to have a verbal conversation with someone my age and closer to my situation. As luck would have it, I have met a wonderful friend with MM, as well as a few others and we are able to support each other. I realized that this is the gift I want to share, being able to help others negotiate this new chapter of life and to feel supported during this sometimes scary journey. It's truly better together.

Mary Sage

lymphoma 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.