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 email me HEALINGMYELOMA@gmail.com Wishing you peace and love.

Carol Malicki

multiple myeloma coach since 2022

I was diagnosed with Plasmacytoma when I broke my neck skim boarding. I had surgery then radiation. The following year it was confirmed I had Multiple Myeloma at which point I started chemo pill treatment. The following year I had a stem cell transplant and did not initially go back on chemo pills. 3 years later my numbers started spiking so I went back on chemo treatment and when my numbers went way down we lowered my dose until I went off it again. Throughout this crazy journey I have made a lot of changes. I’m eating much healthier, removed toxins from my house, started exercising more and with my naturopaths guidance take a number of supplements along with my oncologist’s approval. I never suggest to anyone that they should follow my path. Everyone is unique. I do have hope but I do have to push myself and I do worry every now and then. However, I do feel strongly that a positive attitude and as healthy a life as you can manage can only help.