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.

Adam Plescia

multiple myeloma coach since 2021

I was diagnosed with multiple myeloma in October 2021 at age 48. It was found through routine (annual physical) blood tests. I wasn't experiencing symptoms and at the same time was in the best physical shape in my life. It was a profound shock to learn I had cancer, and given the relative rarity and complexity of myeloma, it was especially hard to make sense of the new reality. I was fortunate to have knowledgeable friends who insisted I seek treatment in a major academic cancer center and find a myeloma specialist, which I did. I am grateful to the many people who have supported me in every way (physically, emotionally, and spiritually). I am eager to share my knowledge and experience of this disease with others dealing with myeloma in any way possible. I completed the induction treatment, VRD, then a Stem Cell Transplant in April of 2022. I am currently on Revlemid + Daratumabab maintenance. I've been in a remission since the transplant. Of course I wanted a complete remission and to be MRD negative, but this is not how things have gone. I am happy that the genetic testing results say that I am not high risk and likewise I'm pleased that the disease has remained stable and at a very low level. I continue to work full time and I am very active. My wife Sara and I ski and kiteboard as much as possible. Even a little bit of surfing when it's not windy! She has been by support and caregiver though all this. We do not have kids except the furry kind (a standard poodle). Feel free to contact me in whatever way you prefer: phone, email or text. If I don't answer immediately, I will get back to you as soon as possible (within 24 for sure!).

Angela Byrd

multiple myeloma coach since 2024

Hello, I was diagnosed in July 2021. What I didn’t know was for 11 years before I was MGUS. I was started on Revlimid in Oct 21 and still take 25mg daily for 21 days monthly. I have adrenal insufficiency, stage 3 kidney disease, chronic anemia which I did not have before I was diagnosed. Because I felt so good with really no problems I don’t think I took this diagnosis seriously. I’m a Mom of 2 adult daughters and 4 Grandchildren. I have a great support system but my family has no idea what this Cancer is. I’m a Veteran, but I have no idea if this Cancer came from something I could have been exposed too. No one in my family have cancer and I come from a large Military family.