Kevin Veenstra

multiple myeloma coach since 2024

Hi fellow MM travelers. We are all on a journey not of our choosing to join, but of our choosing how we travel it. I was diagnosed in September 2015 after trying for 3 years to get my general practitioner to find the cause for my dropping hemoglobin levels. I was feeling more and more tired. Finally after 3 years my immunologist/ asthma doctor ran the electrophoresis that detected the cancers. By the time I was diagnosed my bone marrow was 95% plasma cells, my hemoglobin was down to 11 and I had multiple bone lesions throughout my body. I was 56 years old and still working full time. I had recently been remarried and the diagnosis upended all the plans we were just starting to make. We both felt like we were run over by the proverbial truck. I was seen by a local cancer clinic. It took about two weeks to get all the testing and to see the hematologist. Fortunately I was able to qualify for intermittent FMLA with my employer. I started a clinical phase 3 trial twice a week IV infusion of Kyprolis on a trial, along with 25mg of Revlimid and 40 mg of dexamethasone. The first few weeks were very hard as I had tumor lysis syndrome since I had such a large cancer burden. On this treatment my myeloma readings and a good response, close but not a very good response (>90% reduction) but had plateaued in improvements after 5 cycles. I was able to keep working with some remote work for teleconferences and only missed about a day a week. At 8 cycles, I went to Mayo Rochester for a stem cell transplant in June 2016. Despite all the training, we were still not totally prepared for how hard the transplant process is. It took 2 days to harvest my stem cells, and I can speak on the downside of not having enough calcium replacement during the aphaeresis as after the first day had a headache, cramps and felt like I had run a jackhammer all day. My stem cell transplant went well, but that said, it is quite an ordeal. Unfortunately the stem cell transplant did not work for me and my cancer markers came out as high or higher than I went in. I was crestfallen and depressed. After a month off treatment, I was put on a clinical trial for Ventoclax and dex as my MM type is t(11,14). It worked well for 8 months then it didn't work. I then went to Darzalex IV infusion, 4mg Pomalyst and 40 mg of dex. Pomalyst wiped me out, gave me a rash and mental confusion but dropping to 3 mg did not totally resolve these issues so I advocated for myself to go back to Revlimid which I tolerated much better. I worked with my hematologist to reduct the Rev dosage to 15 mg and dex to 16 mg to reduce cramping and fatigue without reducing the efficacy of the treatment. I was able to keep up a pretty good quality of life but I was still having a lot of infections. I eventually retired as I didn't want to spend what I saw as my remaining good years of life in an office. I did have to work through what would be my new routines and purpose, one of which was to step up my volunteering in many different fronts. Quality of life was reasonable and I switched to doubles tennis and leisurely hiking and biking. After 2 years, winter of 2019, I started to relapse (Kappa went to 30 mg.dL, ratio >100) so I was initially put in a clinical trial for b21217 Abecma. I was fit enough to qualify, actually too fit as my bone marrow biopsy wasn't >50% so I flunked out of the trial. I went back on DRd. After about a year I advocated to go to Darzalex Faspro as my doctor was in no hurry to switch from IV form. This was a great change as it greatly minimized my time in treatment. I continued on this until my Kappa reading started bouncing around but overall on an upwards trend over 9 months. It got to 110 mg/dL. I was switched to Kyprolis, 2mg Pomalyst and 20 mg dex and my Mayo doctor put me on a CAR-T list. After this treatment relapsed Summer of 2023. I was put on a path to a Carvykti transplant starting with qualification testing in August, aphaeresis in September and treatment in November. I had to do a bridging therapy with Bendamustine, Velcade and predinsone as my cancer was accelerating after being off treatment for harvesting. Carvykti was done all as outpatient at Mayo Rochester. I did have quite the CRS (MAS-like syndrome) and was hospitalized for a week. Despite this the llamas got to work, but didn't overwork and I came out of treatment MRD- and without any neurotoxicity issues. It did take a few months to work out of fatigue and muscle tightness issues but now I am back to living a pretty active, good quality of life. Throughout all the above treatments, I did maintain a pretty active life with tennis, hiking, biking and gardening, along with some travel. I have been the co-leader of an MM support group in Minneapolis / St Paul for 7 years now. I do monitor a lot of sources for the latest treatments and health tips which I share with our members semi-weekly. Other experiences I have had on my journey. I had bisphonated osteonecrosis of my jaw, BRONJ, which was from my Zometa treatment. It fortunately was able to be resolved with chlorhexidine rinses for a month. I also had 2 DVTs, one in my right calf 3 months into treatment and one in my left calf after my stem cell transplant. I am now on Xarelto as a prophylactically. After being testing I am also taking vitamin b12 and D3 as I was deficient in both. I also am doing weekly SCIG, sub cutaneous immunoglobin injections which have worked well to keep me from getting sick. I did one session of IVIG but it hit my kidneys hard and jumped my creatinine levels for months. I was fortunately able to get switched to SCIG through my immunologist and it continues to work great! I do like helping others and hope I can provide some guidance to you!

Larry Brown

multiple myeloma coach since 2025

I was diagnosed in November 2014. I had tandem stem cell transplants 2 in 2015. I was 49 yrs old when first diagnosed. I was exposed to toxic water at camp Lejeune NC from my father’s service in the Navy. I’m currently in Remission

Eric Wolf

multiple myeloma 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!