Spotlight on Verne Saunderson: My Experience on a Clinical Trial

Spotlight on Verne Saunderson:

My Experience on a Clinical Trial

“Trying a new drug gave me hope. I wasn’t going to give up.”

In 2006, I was 60 years old and ready to head off on an extended trip to Australia. During my annual medical, my doctor detected a low hemoglobin count and a second test confirmed the result. I am so grateful that my family doctor was diligent. Within days, I was at CancerCare Manitoba in Winnipeg for a bone marrow biopsy. I was diagnosed with multiple myeloma (MM) and the doctor gave me 2 to 5 years to live; quite sobering. Thus, I began my journey with cancer.

I had farmed for more than 40 years. For two years prior to the diagnosis I reduced my seeded acreage and was enjoying the lighter pace. After diagnosis, I continued to plant two more crops and kept physically active. Although I loved farming, I finally realized that it was best for me to retire.

Following initial treatment with dexamethasone (dex), my monoclonal protein (M-protein) count dropped from 44 to 15 g/L. Months after I stopped the treatment, my protein count started to rise again.

The main treatment at that time was an autologous stem cell transplant (ASCT) and because my myeloma was categorized as IgA (immunoglobulin A) kappa, my doctor checked for chromosomal abnormalities. The test came back positive for the t (4;14) genetic mutation. While the ASCT can initially be effective even with this chromosome abnormality, the myeloma generally returns much more quickly compared to standard risk myeloma. My doctor found a clinical trial that provided treatment of bortezomib (Velcade®) in combination with other drugs for newly diagnosed patients with t(4;14) positive myeloma.

First, I had to meet the criteria for the trial eligibility. Once accepted, I had a complete medical exam including X-rays to determine bone lesions, blood tests, a 24-hour urine test, an electrocardiogram and a bone marrow aspiration. I found the complete health check and the monthly follow ups to monitor my myeloma treatment progression, as required by the clinical trial protocol, to be positive and reassuring for me. Yet, I am still anxious about my monthly blood test results nonetheless. Although there is no cure for myeloma, trying a new drug gave me hope. I wasn’t going to give up.

In this clinical trial lasting 12 months, I received cycles of bortezomib, dexamethasone, doxorubicin and cyclophosphamide. During the trial, my own stem cells were harvested in case an ASCT was to become an option for future treatment. To date, my stem cells are still in storage.

In 2014, after 4 years of being in remission, my monoclonal protein count returned slowly. My next treatment was lenalidomide (Revlimid®) and dexamethasone. This combination worked well to keep my myeloma numbers low, however, I never reached complete remission on this regimen. After about 1.5 years on lenalidomide, my blood count numbers started crashing and my serum free light chain ratio (kappa/lambda) became unstable.

Again, a new clinical trial was available and I didn’t hesitate to try another new drug. The STOMP trial (MCRN-002) is a Phase 1b/2 study of a new molecule called selinexor (KPT-330). In this study, along with dexamethasone, selinexor is administered with either bortezomib, lenalidomide, or pomalidomide (Pomalyst®). In my case, I was randomly assigned to the group that received bortezomib as the accompanying drug. As with the first clinical trial, I had many pre-trial eligibility tests before being enrolled in the trial in March 2016 and I am still currently enrolled. I’ve been in complete remission for more than a year now.

For the first several months, I received the recommended dose of selinexor, bortezomib and dexamethasone (once a week for 4 weeks, then 1 week off) but I felt terrible for 3 or 4 days after each treatment. I was tired and not interested in anything but sleeping. The drugs also drastically lowered my platelet count and bortezomib was intensifying my neuropathy so I had to skip treatment on occasion. I was already in complete remission when the doctor reduced the selinexor dosage by half and changed bortezomib to biweekly (from weekly). Life is better on the reduced dose and I’m still in complete remission.

I’ve been a cancer survivor for 11 years and I have not been alone on my journey with myeloma. For a year after diagnosis, I kept in contact with a myeloma patient who had “been there”. It was so helpful to me to hear about his treatments, reactions and how myeloma had changed his life - thank you, Roland. I’ve also had wonderful doctors at CancerCare Manitoba and I really appreciate their guidance and support. My clinical trial nurse has also been outstanding. She has maintained a huge pile of records on me and kept me on schedule for all my visits. When we ask for flexibility for a vacation, she adjusts my treatment schedules and checkups if she is able to. My family doctor has also been a big part of my support team.

I think it’s important to stay informed. My wife and I have attended numerous Myeloma Canada conferences. These two-day conferences have provided me with a great opportunity to learn and understand more about the disease, learn about new treatments, how to manage side effects, and meet fellow patients and some doctors who treat myeloma. I also follow all the news provided by Myeloma Canada and the International Myeloma Foundation, as well as “Smart Patients”, a multiple myeloma online forum.

We live 250 km from CancerCare Manitoba so it was our choice to commute to Winnipeg for my treatments. My wife has accompanied me on most of my visits, often doing all the driving because of my fatigue. Even though our adult children live out-of-province they have been a big support. In 2009, my son cycled from Calgary to Toronto to raise awareness and funds for multiple myeloma. We’ve received great support from friends as well.

Verne's son, Shane, on his bike ride to Toronto

Unquestionably, my myeloma journey has been tough. Side effects from the drugs seem to “steal” days of living. It has also been difficult being tied to treatment schedules and doctor visits. A low immune system leaves me susceptible to respiratory issues and any scratch to my body can easily become infected. Myeloma has not affected my bones (except for age-related thinning) or other organs and I have good mobility. My wife and I continue to travel, working around treatment cycles. During the summer, I am an avid gardener, an occasional golfer, kayaker, fisherman and hiker. Cross-country skiing, some downhill skiing and deer hunting help pass the winter. Our grandchildren are in Alberta so we travel there often to help and to watch them grow up. We’ve also just returned from a European River Cruise, and despite this long battle, I feel fortunate.

Verne Saunderson