Steve DeVinney

multiple myeloma coach since 2024

Dismissing my fatigue and bone pain in 2021 as normal for an overworked 53 year old guy, I put off seeing a doctor until my coworkers cornered me and forced me to go to the ER. My kidneys were failing and I went off a cliff as soon as I was admitted to the hospital. They assigned a nephrologist. He wanted to treat the kidney injury first. Fortunately a family friend who is a hem-onc got me switched to Winship at Emory and enrolled in a clinical trial for patients with acute kidney injury. I went though 4 cycles of Dara-RVd, then a pause for kyphoplasty of my S1 vertebra, then Auto SCT in November 2021. I’ve been in remission since. Although Revlimid restricts my exercise intensity, I’ve been able to resume almost the same exercise regimen as before. I’ve been fortunate to be able to work throughout (except for a couple weeks at the beginning and during SCT).

Rick Sturm

multiple myeloma coach since 2021

First diagnosed in January 2020 because of a fractured lumbar vertebra. A CT scan also showed numberous lytic bone lesions. I got a recommendation of an awesome oncologist in Denver at the Colorado Blood Cancer Institute (CBCI). My initial treatment (induction therapy) was Velcade, Revlimid and Dexamethasone (I had a severe reaction to Velcade). After 5 months, I had an AUTOLOGOUS STEM CELL TRANSPLANT. After that, I was on maintenance with Darzalex FasPro (daratumumab) which initially was quite effective. However, after 2 years on that drug, my numbers started going in the wrong direction. The next step was pairing daratumumab with VENETOCLAX. Then in October 2023, I received CAR-T therapy (CARVYKTI). Two months after that treatment, I had achieved Stringent Complete Response (=complete remission).

Randy Miller

multiple myeloma coach since 2020

In 2017 I wrapped up one of my best years as a competitive ultra marathon athlete with 11 races, one win and several podium places. At the age of 53, I was an elite runner in my age group and felt as healthy as a 20 year old. I felt pain in my mid back while training for the Boston Marathon in the Spring of 2018 and ultimately withdrew when I was diagnosed with a compression fracture of my T5. I switched jobs and started commuting to Houston from Los Angeles every week. My back pain only got worse throughout the year and I finally saw an orthopedic surgeon in November. Now I had fractures to my T11, T12, L4 as well as my T5 but more alarming was the Myeloma signal on the MRI. A week later I was diagnosed with IGG Kappa Multiple Myeloma with an M-spike of 2.3. I had Kyphoplasty on my T11 and T12 and started on VRD therapy. The Methodist Hospital in Houston missed the order to conduct a FISH test from a sample pre treatment. They tried multiple times to get marrow samples from my pelvis but the concentration of Myeloma cells wasn't high enough. As a result I don’t know my specific Myeloma genetic markers. Two months into treatment I decided to switch my treatment to MD Anderson in Houston under Dr. Weber. This was the best move I made during my treatment. Dr Weber switched me to KRD after my progress with VRD leveled off and scheduled me for an Autologous Stem Cell transplant. My induction treatment with VRD / KRD lasted six months. My SCT at MD Anderson went exceptionally well and I was discharged two weeks later to recover at a friends house. My health recovered quickly and my M-spike went from 0.6 post SCT to no measurable M-spike three months later. I still have an unmeasurable trace of BJ protineria that is stable. Dr Webber put me on daily Revlimid for maintenance. My back pain moderated immediately after SCT and I was able to do some slow jogging. Within two months I was running, albeit still slowly, and decided to train for the Houston marathon. I finished the marathon in 3:49 six months after SCT. My slowest marathon but easily one of my greatest achievements. In writing this one year later, I am still running and doing my best to lead a normal life. I still have some back pain from the deformity of the healed fractures but it is manageable. Several other hardships happened during my treatment. My mother of 81 passed away just before my SCT. My best friend died in a tragic mountain trail running accident that left me devastated. I was flying between LA and Houston every week during induction therapy then sold my house during my SCT. I had incredible support of my friends and kids (21 and 23) during this time. Without really knowing it, I developed coping skills for treatment and these events through my years of ultra marathon running. Sometimes when it seems that life can’t get any worse, you just have to put one foot in front of the other and have faith that it will work out ok.