Jessie Daw

multiple myeloma coach since 2020

I was diagnosed with smoldering myeloma in late 2016, after a few years of having increasing severe respiratory infections every 2-3 months. I live in South Dakota, and see a local onc/hem doctor quarterly, with one of those quarterly visits replaced by a trip to Mayo Rochester to see a specialist. I considered some clinical trials early on in my diagnosis, but haven't entered one. My numbers have remained pretty stable since diagnosis. Recently, I went through full work-up for amyloidosis, and that was negative :-). I changed some things in my life in the year after diagnosis, including leaving my job and focusing on quality of life issues. In that respect, this diagnosis has been a blessing. Of course, I'd rather not have the diagnosis, but it spurred some changes that I don't think I would have made otherwise, and I feel like my life is richer because of those changes. I have become involved in patient advocacy, as I started South Dakota's first myeloma support group. I also have participated in an MMRF Moving Mountains for Multiple Myeloma event, and I really enjoy serving as a Myeloma Coach. I value the time I get to connect with others who have myeloma. We all have our challenges, and connecting with others around those challenges, as well as the good things in our lives, is really meaningful.

Tad Chance

multiple myeloma coach since 2022

Tad was diagnosed with Stage 2 IgG Kappa Multiple Myeloma in August 2021 at the age of 47. Tad underwent 3 1/2 rounds of induction therapy (cut short by Velcade induced neuropathy) and a Stem Cell Transplant in December 2021. Maci dove head first into the role of caregiver, educating herself, organizing medical records, and acted as an advocate for Tad's care. In March of 2022 Tad achieved Very Good Partial Response to his treatment. In April of 2022, in addition to starting 10mg of Revlimid daily, Tad was enrolled in a clinical trial to test the efficacy of Daratumumab as maintenance therapy and receives shots monthly. In September of 2022 he reached Complete Response (just a few days before our wedding!), in July of 2023 achieved MRD-, and he continues his maintenance treatments to this day. Between us we have 5 children ages ranging from 17 to 22. We maintain a grounded approach to supporting them through the diagnosis and treatment. We continue to learn and grow as we adjust to life with Multiple Myeloma (or as we like to say, Myeloma adjusts to life with us!) and have chosen to take this journey with informed optimism. We have faced hard things, we will continue to face them, but we intend to find gratitude and celebrate every day. We would love to support others on their journey with Multiple Myeloma.

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 life after the transplant and the many dietary changes and lifestyle that I have made since being diagnosed. 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 AM A FINANCIAL COACH FOR ALL BLOOD CANCER PATIENTS. 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.