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.

Robyn Osborn

multiple myeloma coach since 2025

Hi! I was diagnosed with myeloma in June 2024, so I'm still relatively new to this myeloma game. I was diagnosed with MGUS in early 2020 and monitored for three years. By summer 2023, my MM specialist began to suspect Smoldering Myeloma, which was confirmed with a bone marrow biopsy in August 2023. At that time, he encouraged me to start MM treatment with DRVd, but I was reluctant because I had no symptoms and didn't have active MM, yet. I decided to get a second opinion, and that MM specialist recommended holding off on treatment until, and if, I developed active MM. By March 2024, I began to experience fatigue and shortness of breath, and in May 2024, a bone marrow biopsy confirmed that I now had active MM. On June 17, 2024, I started induction therapy on DRVd. About 4 cycles, my MM specialist decided I was not a good candidate for a SCT, so as a result, she had me complete 6 cycles of Induction therapy. In mid-November, I began experiencing peripheral neuropathy in my feet, which she attributed to the Velcade, so she stopped treatment. My kappa light chains and m-spike were within normal range, so she determined that I was ready to move on to maintenance. Those were the sweetest words I had heard in a while! In December 2024, I started on monthly Darzalex Faspro (Dara). Even though Revlimid is standard of care in maintenance, she decided against adding it back in due to the related side effects I had suffered during induction. So, for now, I am on maintenance with monthly Dara, with no noticeable side effects, I'm happy to add, and I also receive Zometa infusions every 3 months, which were started in July 2024. I am also happy to report that my kappa light-chains are still within normal range, and my M-Spike in April was zero!

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.