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…

Scott MILLER

multiple myeloma coach since 2023

Hello, I was diagnosed with MM in 2015 at the age of 49. I went through my first Auto SCT in 2015 and was MRD till 2020 with just six months of Velcade Maintenance ending in Oct 2016. I had my second Auto SCT in 2021 with one year of chemo free living. I have been on Pomalyst since November 2022. I have been a mentor to firefighters with MM since 2016. I live in beautiful NW Montana close to Glacier National Park and continue to live my best life in one of the most beautiful places on earth. I live with my significant other Darla and my golden Labradoodle Chief. Since my diagnosis I have had at different times regular insurance, medicaid, and currently on Medicare with a supplement and part D coverage. I have personal experience doing research on insurance and grant assistance.

Andrew Gordon

multiple myeloma coach since 2022

I was diagnosed with multiple myeloma in 2013 at the age of 61. I did five rounds of VRD, had a stem cell transplant in early 2014 and did two years of maintenance with Revlimid. I was in remission for many years and was off all treatment from March of 2016 until I relapsed in December of 2023 The myelomas reappeared in my central nervous system, not my bone marrow. It is a very rare phenomenon. I received seven months of systemic chemo and intrathecal chemo (chemo infused into my cerebral spinal fluid through a port under my scalp). I am now preparing for CAR-T therapy. I am a semi-retired attorney who exercises relentlessly, including going to the gym daily and riding my bike over 10,000 miles a year. I am a strong believer in the benefits of exercise for cancer patients. I have informally coached many myeloma patients and I am part of the MMRF mentor program. I have a strong desire to help other myeloma patients, especially those who are newly diagnosed or who are contemplating a stem cell transplant. I know how difficult it can be to deal with this sometimes mysterious disease and how helpful it can be to talk to someone who has been through it.