Laraine Jones

multiple myeloma coach since 2022

I was diagnosed in June 2011. This diagnosis came after an inquiry by me with my primary care doctor about the fact that I noticed that I was losing weight. My weight loss was noticeably significant. Upon running a bunch of labs, my primary care doctor suspected that I might have MM because of the fact that I was very anemic and I had an elevated M-protein spike. My PCP referred me to a hematologist. Upon meeting with the hematologist, additional tests were done, including a bone marrow biopsy that resulted in a positive MM diagnosis. Of course I was initially in disbelieve of the diagnosis. I kept thinking to myself that perhaps the doctor made a mistake. But eventually I realized that there was noting for me to do but to accept my new reality. This began for me a journey to learn all that I could possibly learn about MM by reading the educational materials published by the MMRF, LLS and the IMF, as well as reading books written by my fellow MM warriors such as the late Pat Killingsworth. I also joined a number of Facebook MM Support groups. I began my first line of RVD therapy in July 2011. This was followed by a SCT in November 2011. Post my SCT, I began Revlimid maintenance in June 2012 and remained on this therapy until June 2016, when I relapsed due to a gradual uptick in my M-protein. I eventually began a new therapy which included Daratumumab + Pomalyst + Dexamethasone. I have been on this therapy since April 2017 and continue to have a very good response to my treatment. I now live a 'new normal' active life able to enjoy activities such as photography, golf, outdoor and indoor biking, swimming, walking as well as being active volunteering with my church and sorority. I have learned so much because of this journey and, needless to say, I now have a far greater appreciation for this thing called life!

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.

Susana Vivares

multiple myeloma coach since 2023

I was diagnosed with smoldering multiple myeloma in 2019. After much reading and research, I decided to go for ASCT on 10/2022; all went well. Currently, I am under maintenance with Pomalyst low dose. I continue to educate myself about everything concerning MM. It is an endless task, but one I embrace with optimism because of all the medical progress in treating MM.