Myeloma Misdiagnosis to CAR-T Remission: A Survivor’s Advocacy Story

The International Myeloma Foundation continues to share this collection of patient and care partner stories from those who have completed the Legislative Advocacy Master Class (LAMC). The IMF hopes that these unique and compelling stories will help raise awareness about the disease, inspire action, and make an impact in changing healthcare laws and policies for the betterment of the myeloma community. 

(EDITOR’S NOTE: The Legislative Advocacy Master Class is a 12-week immersive advocacy training course, and a combined collaboration between the International Myeloma Foundation and Patients Rising—"a leading grassroots patient advocacy organization seeking comprehensive policy solutions that puts the patient experience at the forefront of addressing America’s biggest healthcare challenges.” The stories in this blog series were taken from the now-completed second class, where participants submitted their stories as final projects to graduate from the course. The LAMC is an ongoing effort to train advocates for the IMF to tell their stories, write a letter to Congress, and make an impact in changing healthcare laws and policies. If you have questions or inquiries, or if you would like to sign up for future LAMC courses, please email Michael Riotto at [email protected] (mailto:[email protected]).) 

This week's blog was written by Kevin Veenstra — a 10-year myeloma survivor and a support group co-leader of the Twin Cities, MN Multiple Myeloma Education and Networking Group. Here is Kevin's story.

I was diagnosed with multiple myeloma ten years ago. At the time I was newly married, and we were looking forward to a new chapter in our lives without kids. Unfortunately, it was not the chapter that either of us envisioned. The initial shock and fear were overwhelming. Googling multiple myeloma was a further mistake, as the information was very out of date and gave me three years to live. Added to that, I was misdiagnosed by a general practitioner for three years, despite my bringing up my fatigue and dropping blood counts. While the correct diagnosis brought answers, it did not bring relief. 

Becoming My Own Best Advocate 

My wife and I would have agreed to anything the hematologist recommended because we were dumbfounded. The initial treatment plateaued after six treatments. Then, I underwent a stem cell transplant. Unfortunately, unknown to us, despite all its trials and six months of recovery, it would not impact my cancer at all. I came out of it as sick as I went in, and now my life was really flashing before my eyes.  

I was put on a clinical trial that gave me another seven months, but then my cancer came back again. Over the next six years, I was put on multiple treatments that suppressed but never eliminated the cancer. I never had a break from treatment and was quickly running out of treatment options! To say we were anxious would be a gross understatement. However, unlike my initial diagnosis, I was now determined to research and understand my options beforehand and vigorously advocate for modifications in treatments as needed for my quality of life. 

Undergoing Game-Changing Treatment 

Fortunately, during the last few years immunotherapy was making big leaps in hematological cancers. My doctor and I had numerous discussions on the various treatments, and I was finally approved for my CAR-T treatment. I had my T cells withdrawn early September 2023. Then, I had eight very anxious weeks while my modified T cells were manufactured.  

My cancer was roaring back, and I was put on an old school bridging therapy to make it to my November 2023 treatment. While it was a bumpy first month, it has been an absolute game changer for me! Within a month I was in total remission and continued to be there eighteen months into this one and done therapy. No more chemo treatments so far! I feel the best I have in 20 years. My quality of life is great! We now have the freedom to travel without having to plan around or skip treatments. When first diagnosed with this incurable disease, I would have never imagined this treatment being possible. I know my myeloma will eventually come back, but I am hopeful there will be another advanced treatment when that does occur. 

The Gift of Cancer Research 

These immunological treatments are the culmination of a lot of basic research that started with NIH grants. No pharmaceutical company would have ever thought of combining a llama virus vector with someone’s immune cells to kill their cancer, which is what my treatment did. 

My treatment, and other treatments, are truly game changers for people who never had a hope of normal life before. However, these and the next generation of treatments, are once again only possible via the multitude of basic research studies that are funded by NIH grants. I hope my story helps you understand and support the need for maintaining funding for these NIH grants. 

Beyond treatments, I, along with my doctor, had to advocate with my insurance company to approve, then continue to approve, treatments that improved my overall quality of life. You are the expert on you, and the more involved you are in your journey, the better your journey will be.