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!

Susana Vivares

multiple myeloma coach since 2023

I was diagnosed with smoldering multiple myeloma in 2019. After much reading and research, I decided to go for ASCT on 10/2022; all went well. Currently, I am under maintenance with Pomalyst low dose. I continue to educate myself about everything concerning MM. It is an endless task, but one I embrace with optimism because of all the medical progress in treating MM.

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…