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.

Cassandra McDonald

multiple myeloma coach since 2020

I was diagnosed in 2018 with IgA Kappa and IgA Lambda Myeloma or "Bi-Clonal" Smoldering Myeloma which since has progressed. My experience as a myeloma patient has solidified my belief that when life fights you, you have to fight it back. My biggest challenges are not the diagnosis but finding a specialist who spends the majority of their time researching myeloma cases and actually "listening" to me and not just looking at labs and symptoms to equate to how I'm feeling. However, I am blessed because my sons and grandchildren keep me going, and plus I still believe I have so many more years ahead of me to love and to give of myself. I am appreciative that I found the Myeloma Crowd, and that they have given me a voice. It is my pleasure to help you. Together, WE CAN!

Lisa Hatfield

multiple myeloma coach since 2024

Radiation, surgery, chemo. In that order. It was decided while we sat in a sterile room at MD Anderson with my radiation oncologist who was speaking with my neurosurgeon, while both examined the images of my spine. Damaged by myeloma. A blood cancer. I was numb. A plasmacytoma was asserting itself and growing dangerously close to my spinal cord. The debate: radiation first vs surgery first. Chemo wasn’t even on the table. My spine had to be stabilized. I wanted to talk about the cancer and all the other lesions and malignant cells in my bone marrow. But that would have to wait. That was May of 2018. We left our daughters with family, on Mother’s Day. MD Anderson asked us to commit to being there a week. We were there a month. I returned home with a walker, a lot of pain, some fear, and a chemo cocktail recipe written by my medical oncologist (who I was finally able to meet). My chemo was administered in my hometown. Kyprolis, Revlimid, and dex. Kyprolis was not approved at that time for first-line therapy, but my myeloma specialist at MDA was able to get approval for me to receive it at my local cancer center. 6 months of KRd followed, while still recovering from major spine surgery. With a short break from KRD, I had stem cells harvested. And frozen. I opted to delay autologous stem cell transplant (ASCT), as I was still recovering from surgery and did not want to be away from our kids for another extended period. Revlimid was not my friend. Following the 6 months of KRD, I continued Revlimid maintenance for 4 years until the cumulative effects altered by quality of life. (Still dealing with those, even after discontinuing Rev almost two years ago). Most recent Clonoseq bone marrow biopsy showed 572 cells per million (my daughters’ birthdays and my anniversary date used to be the most important numbers to me… this “572” has crept a little too close to the space of those important numbers…I guess that’s how myeloma is). All of my decisions have been made with the two myeloma specialists I see on a regular basis. I am a HUGE advocate for expert opinions with myeloma. And… I believe that myeloma specialists are extraordinary people (mine are incredible human beings). I love good coffee, good chocolate, good books, good conversations, and good, genuine connections. I believe that connecting with others is a critical piece in our myeloma journey and enhancing our quality of life. Not every day will be good, but every day can have hope. I hope I can be a soft but strong support for others and a giver of hope.