26 Years of Stage 4 (IV) Survivorship: Wells’ Story

Wells W. is a longtime friend of GO2 for Lung Cancer. At 91 years old, he is part of the Leadership Circle, a group of our most generous supporters.

I was diagnosed with lung cancer in 1998 at age 65. I have a BA in Chemistry from Harvard and an MS and ScD from MIT in Materials Science and Engineering. At the time of my diagnosis, I was working as a product development scientist for Raychem Corp in Menlo Park, CA. For over 40 years, I did basic research on materials and developed products.

Before I was diagnosed, I wasn’t feeling well. I was experiencing shortness of breath and a persistent cough, lost 20 pounds, and was tired and cranky most of the time. I knew something was wrong but thought it was due to being overworked, excessive overseas travel, and loss of sleep. My wife and a good friend of ours suspected differently and insisted I see a doctor. When I heard the diagnosis was stage 4 (IV) NSCLC with a prognosis of 10 months to live, I was shocked and stunned. My survival instincts took over. That afternoon, I retired from Raychem and “got to work” on my cancer.

The first step was to learn everything I could about the disease: its history, epidemiology, and treatments.

What my doctors told me was true – I was likely to die within the year. However, since I had been an experimenter all my professional life, I interviewed several doctors, got second opinions, and chose the oncologist who seemed most open to trying things even though they may not have been typical. I even got a thoracic surgeon to agree that if I could reduce my major tumor burden by 50%, he would consider doing an operation to remove it.

Several months of intensive chemo reduced my tumor by 50%. I had a lobectomy to remove the major tumor. I then did many more months of different chemo regimens to get rid of 19 small tumors that had developed because of the operation. These new smaller tumors were reduced to only 4 small ones.

This was when researchers were beginning to look at the genetics of diseases. I was able to get my tumor sequenced and found out that there was an EGFR genetic marker, which made me eligible for enrollment in a compassionate use trial (an investigational treatment for someone who has a serious or life-threatening illness) with a very new drug, Iressa (gefitinib). I also took Celebrex (celecoxib) daily to treat pain and inflammation. Many years later, several clinical trials confirmed that the drug I took was a proper course of treatment for lung cancer.

During the 1st few years, I continued extensive research, including using the internet, visiting libraries, and accessing drug companies’ websites. I even attended ASCO, a very large national meeting for oncology. I listened in on the lung cancer sessions and got to know some of the leading doctors in the field. I was not satisfied with the conventional support groups, so I started my own with male friends and relatives. I didn’t need support groups for cancer information because I got that on my own. I wanted spiritual, social, and psychological support.

I obsessively kept records of everything: journals, reports of doctor visits, spreadsheets of medications, scan results, etc. I often knew more about my case than my doctors.

Once I was safely in a steady situation (not cured or in remission), I started speaking out. I met with others and gave talks about my story, made a 50-minute video about my journey, and started a website company. Later, I joined and chaired the Thoracic Oncology Cabinet at UCSF. After that, I co-founded the Bonnie J. Addario Lung Cancer Foundation, which merged with the Lung Cancer Alliance in 2019, creating GO2 for Lung Cancer.

So, where does all this leave me now? I am fully retired, having done several start-up projects. I do some volunteer work, primarily for lung cancer but also for civic programs and agencies and a few nonprofits. I felt so confident that I could continue to survive that I replaced one hip and both knees.

My lung cancer journey certainly has changed me. It has not only given me confidence and a sense of control over my well-being but also allowed me to face the certainty of my ultimate death and to better accept the inevitable flow of life. I continue to contribute to GO2 as a Leadership Circle member because they fund the latest research to understand the origins of disease, which will advance early detection, better treatments, and survival – and they are there for anyone diagnosed with lung cancer.