7 takeaways from a myeloma survivor
Bryan
State: Maryland
Congressional District: MD02
Diseases
Blood Disease, Cancer
Issues and Challenges
Bryan has encountered: Rare / Underserved Disease
My Story
My name is Bryan Soronson. I was diagnosed with stage 1 Multiple Myeloma in July of 2018 one day after my 65 th birthday. This was the biggest shock of my life to say the least. I was very active and physically fit, had an incredible job as the Senior Business Administrator of the University of Maryland Department of Neurology and have a great family, traveling extensively for work and pleasure. Fortunately, I was totally asymptomatic. Fortunately, my primary care physician detected something being off in my blood work and recommended that I see a hematologist. The hematologist did further testing including a bone marrow biopsy (the first of eight) and made the diagnosis.
I was familiar with Multiple Myeloma since two of my co workers died of the disease several years earlier. I received a second opinion at Johns Hopkins, and decided to be treated at the University of Maryland Greenbaum Cancer Center, since I worked in this Medical Center and I “ knew where the bathrooms were” and was quite connected there. When meeting with the MM specialist, he explained the treatment options and future course of action. I explained that I had a trip to Europe scheduled the following month and asked if I could take this trip. He explained that if I could compartmentalize this diagnosis, and still enjoy the trip that I should go, and if this is not possible, I should cancel the trip. This was the best advice that I could have received. I had a fantastic time on this trip, was extremely active and made only one adjustment- drink much more water.
Induction treatment started a few months later with a three drug combination. I made the decision to undergo a stem cell transplant. However, as I was preparing for this, an unrelated health issue was identified which necessitated removing of 10 inches of my colon. I am very fortunate that this was caught BEFORE my transplant.
The stem cell transplant occurred in late December 2019-January 2020 at the University of Maryland Greenbaum Cancer Center. I was motivated to remain active and logged 55 miles (47 on the treadmill) during my 15 day hospitalization. The transplant was not as difficult as I was prepared for, and I immediately started my recovery at home. My 100 day recovery almost coincided to the day with the Covid lockdown in March 2020 so I continued to work remotely. I worked out on my treadmill every day during this period.
In my role as Senior Administrator of the Department of Neurology, I oversaw the administrative aspects of over 200 clinical trials in the areas of Multiple Sclerosis, Parkinson’s Disease, Stroke, Epilepsy and Neuromuscular Disease and became a subject matter expert in this. I also have given many presentations and written articles on the management of trials. I retired from this position in April, 2022.
Post transplant, the Auriga clinical trial which studied the addition of Daralex Fastpro to the standard of care therapies post stem cell transplant opened and I qualified for this study. Luckily, I was randomized into the treatment arm and participated in this three year study which ended in February 2023. Since that time, I am in a complete stringent remission and have been off all medication and am evaluated every six months. While I am extremely optimistic, I am also realistic that the disease can reoccur. If this happens, I will again go on treatment. There are many new treatments approved for MM which will be available if this is necessary.
Here are some take away points:
-Patients with rare diseases should see a disease specialist (vs a general physician), at an academic medical center and if possible participate in a clinical trial if they qualify.
-Maintain an active lifestyle and push to remain physically fit. While this may not stop you from getting the disease, it will help you fight it and the side effects of the strong medications that you are taking.
-Identify support groups and obtain as much education as possible about your disease and possible therapeutic questions.
-Look for a coach if available to navigate through your medical journey.
-Don’t be afraid to ask your provider or care team questions and get a second opinion if appropriate.
-Maintain a strong support group of friends and family to help you in your medical journey.
-Continue your life in as normal of a way as possible, with social interactions, travel, education, exercise and other aspects that are important to you.
Over two years ago, I became a Myeloma Coach with HealthTree Foundation, working with patients recently diagnosed with MM. I cannot express how rewarding that this has been as I am getting much more out of this than I expected. I have also become active in other MM support groups and have learned so much from this. In addition, I have also connected with a few “myeloma buddies” who have become good friends. We share our medical experiences with each other even more than with our spouses and this has been very helpful.
I hope to be able to use my expertise from managing an academic medical department, knowledge in clinical trials and the health care system, as a cancer survivor and clinical trial research subject to advocate for blood cancer patients as well as other patients with rare diseases to improve the quality and access to care as well as addressing the cost of care medications need to properly fight the disease.
My Motivation and Inspiration
My motivation is the importance of my family and friends as well as trying to do my best to insure that patients get the access to care, treatment and medications to treat their disease.
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