Susana Vivares

multiple myeloma coach since 2023

MY JOURNEY WITH SMOLDERING MULTIPLE MYELOMA DIAGNOSIS AND TREATMENT DECISION In 2019, I was diagnosed with smoldering multiple myeloma. Confronted with this difficult news, I delved into extensive reading and research to understand my options better. After careful consideration, I decided to undergo an autologous stem cell transplant (ASCT) in October 2022. The procedure went smoothly, marking a significant milestone in my treatment journey. CURRENT TREATMENT AND STATUS At present, I am on maintenance therapy with a low dose of pomalyst. However, three years after the ASCT, I am no longer MRD (minimal residual disease) negative. This development has introduced new uncertainties; therefore, there are many unknowns as I look ahead. MY APPROACH AND PERSPECTIVE Despite these uncertainties, my approach to multiple myeloma has always been to focus on “maintaining and improving my quality of life,” rather than letting the disease control my life. I believe it is important to keep living well and fully and not let MM become the center of everything. As patients and caregivers, we often navigate a path filled with uncertainties. That is why I strongly believe in the importance of educating ourselves and taking ownership of our multiple myeloma—after all, it is our MM. If you ever need someone who is willing to listen with empathy and compassion, please feel free to reach out.

Derek Johnson

multiple myeloma coach since 2023

I was diagnosed in 2019 at 34 years old, on my grandmother’s birthday. Though, symptoms were compounding for over 9 months. I had some cough and congestion that held-on for 1 1/2 months. Then I had extreme eczema on my hands which made it apparent my immune system was starting to go haywire. Finally, leading-up to diagnosis was extreme back pain and 1/2 hour long back spasms. Hindsight is 20/20. Obviously, I shouldn’t have gone 10 years without a blood test. With that in-mind, perhaps my Myeloma could have been caught sooner instead of 90% Myeloma concentration found at the ER with a subsequent 2 1/2 week hospital stay due to uncontrollable pain. Now, I advocate for anyone with odd symptoms to schedule a blood test as it could save their life! Though, it’s funny looking-back as my pup had regular blood tests… we’re educated that’s the best way to catch major health issues for our furry friends, right? My introduction to Myeloma and cancer was not gentle. I was kicked-into the fire pit. But thanks to close family support, my pup, and fortunately an A+ oncology team I’ve made it out the other side. As I was getting past the emergency phase and into the maintenance phase there were some real shockers. I learned that I was outside the normal age-range for this cancer. I learned nearly 6months after diagnosis that there is no cure. Thus, I’d be on cancer meds for the rest of my life. Finally, why would I need a stem cell transplant? I had a successful stem cell transplant experience in July of 2020. I’ll admit it was a rough ride, but the hospital food was beyond excellent and made it that much better. Having Cancer sucks. There’s no other way to put it. No one wants to receive news they or a loved one has cancer. Though, thanks to modern medicine, Multiple Myeloma can for the most part be kept under control and maintained. Sure, there may be some physical limitations due to cancerous effects on the body and/or side effects from medications. But thanks to new cancer medications, one can still live a life worth living with some alterations. Don’t allow this cancer to get the best of you…

Dave Braucht

multiple myeloma coach since 2023

Having faced 4 cancer diagnoses, including Multiple Myeloma and a related disease of AL Amyloidosis, I understand the shock and fear that patients experience. My personal journey, coupled with my father's and sister's own Multiple Myeloma and AL Amyloidosis diagnosis, treatments, and experiences has given me over 30 years of firsthand knowledge. I specialize in coaching patients, particularly those with AL Amyloidosis and other blood cancers like CLL, offering support and guidance based on my unique perspective. I'm passionate about empowering others with hope and knowledge, especially regarding AL Amyloidosis, which is often missed or misdiagnosed. I want patients to know there are many great treatments available and to avoid outdated information online. As a HealthTree Myeloma Coach since Fall 2023, and current Co-Lead of the Pacific Region Cure Hub Cure Team, I'm dedicated to supporting patients at all stages of their journey. My expertise includes: 
* AL Amyloidosis 
* Navigating Health Insurance and Financial Resources (I am a HealthTree Financial Coach) 
* Certified Cure Hub Coach
 * Long-term Daratumumab treatment insights 
 * Stem cell transplant considerations
 * Bispecific Antibodies Beyond patient advocacy, I connect with others globally as a Ham radio operator and serve as a volunteer examiner (VE), helping aspiring hams obtain their FCC licenses. My faith, family, and country are central to my life, and I enjoy camping, hunting, fly fishing, and time with my Golden and Flat-Coated Retrievers. Feel free to reach out anytime if you have questions! Even if you just want to chat and learn more about coaching with me, that's great. I can send you a link to my scheduling tool by email or text message. It's easy to find a time that works for us. I'm looking forward to connecting and helping you navigate your path.