Derek Johnson

chronic lymphocytic leukemia 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…

Ana Rocha

chronic lymphocytic leukemia coach since 2023

Hello I'm a Portuguese woman. I'm 53 years old and I was diagnosed with myeloma (non-secretory) in July 2021. I went to the hospital with a lot of back pain and I couldn't move my right arm anymore and I could barely walk. As soon as I was diagnosed, I started doing the 1st chemotherapy on my birthday, 08/30/2021. I was hospitalized for 8 months. 3 of which I couldn't move and then I went to the long term care and started physical therapy and started walking. I've already had 2 autologous transplants and I'm currently in remission with suspected MRD+. In Portugal, MRD is not evaluated.

Eric Wolf

chronic lymphocytic leukemia coach since 2023

Initially, I attributed my pain and fatigue to the cumulative effects of 28 years of exercise, field work, and combat tours as a U.S. Marine. Yet, as my symptoms grew worse–debilitating back pain, a bout of pneumonia, and severe flu-like symptoms–my tough-it-out attitude gave way. An emergency room x-ray showed a collapsed T-12 vertebra. I'd been working a diplomatic assignment at the US Embassy in Mexico City. I was immediately medevaced to the Naval Hospital in San Diego. It was there, in February of 2012, at the age of 46, that I was diagnosed with multiple myeloma. I never returned to Mexico and my life changed forever! After successful surgery to stabilize my spine, followed by months of physical rehabilitation, it was time to tackle multiple myeloma. Fortunately, I had a good healthcare team and they recommended the standard approach at the time: autologous stem cell transplant (ASCT) followed by consolidation therapy. I struggled over the course of the next six years to keep my disease in check. I was on and off nearly every combination of proteasome inhibitor (PI) and immunomodulatory (IMiD) drug; multiple lines of therapy. Even two clinical trials. By mid 2018 I was very sick. Three times a week, I was in the cancer center, often receiving blood or plasma to keep me alive. Fortunately, I was seeing a myeloma specialist and going to a research hospital. We decided that the best approach was another transplant even though my first one never put me into remission. Using stem cells collected back in 2012, I went in for a second ASCT in Nov 2018. I am overjoyed to report that this treatment, with maintenance therapy including a monoclonal antibody, has kept driven me deeper and deeper into remission over time; at of June 2023, after 11 years, I'm Minimal Residual Disease Negative (MRD-)! In April of 2014, I retired from the Marines, and the following month my youngest son graduated from college. The month following his graduation, we started a thru-hike of the Appalachian Trail, from Maine to Georgia, about 2,200 miles. We hiked for five months. Who would have thought that as a myeloma survivor, I could through hike the AT!!? I don't have the strength and stamina to hike and backpack anymore, so I've taken up motorcycle touring and camping. And if I'm being honest, there are days when I struggle with identity: who am I now that I'm not the active, fit, Marine anymore? My wife and I have been married for 38 years and have four adult children and one grandchild, a seven year-old girl. My passion though, is peer mentoring myeloma patients; praying with them, sharing my experiences, and helping them navigate cancer. I have been blessed with great support over the years from my church, my family, my healthcare team, and my myeloma support group. I just hope to give a little back. This disease is tough, and riddled with decision points. There are no clear answers but what we do know is that we can live long and full lives. Myeloma does not define who we are!