About the Founder of the Myeloma and Amyloid Program

An interview with John C. Davis at the program’s induction

Q: Can you give us a little background information about yourself: where you’re from, what you do for a living?

A: I live in Little Compton, Rhode Island, and I’ve held numerous jobs over the years so that’s a bit tricky to answer. For a while I coached hockey at Roger Williams College. I’ve always been very passionate about sports so coaching came very naturally to me. I was also incredibly fortunate to have some success betting on sports over the years. I used this money to start a string of single’s clubs throughout Providence and Newport, Rhode Island. In the middle of all this, around the time I was 30, I was able to graduate from Brown University with a degree in Political Science. Since then, using my personal experience from betting on sports, I became a certified expert in gambling wire tap law and worked as a financial and legal consultant. I also love playing golf. I’ve played in many tournaments including the 1996 US Open.

Q: How did you first learn about multiple myeloma?

A: Pretty simple: I got it. I had a home in Florida, and I got the diagnosis when I was down there. I really didn’t know much about the disease until that point, but getting the diagnosis was a pretty strong push to learn as much as I could about what I would be dealing with. I talked to 3 doctors in Florida to make sure I had a full understanding of my diagnosis and options.

Q: How did you deal with your diagnosis?

A: Well, I wasn’t as involved with the myeloma community then, so I hadn’t met many of the wonderful people I know now. There wasn’t much to do except focus on getting treatment. I knew that the only way to get better was commit to following a comprehensive treatment schedule and get any therapy that was necessary. I ended up packing up my two Bengal cats in my car and moving to an apartment in Arkansas for 5 months where I was getting my stem cell transplant in 2007.

Q: Do you remember any symptoms from before your diagnosis?

A: Really I just had overwhelming fatigue. I was lucky to have an incredible internist in Florida diagnose me because a lot of times myeloma is hard to catch.

Q: How are you doing now?

A: I’m doing all right. There are usually side effects to these treatments so I have some neuropathy. I’m not as good as I was before I got myeloma, but definitely better than when I was diagnosed.

Q: What advice would you give to other families in a similar situation to you?

A: Get as much information as you can. So much of the pain of getting a disease like myeloma is the fear: not knowing what is happening in your body and what can be done. Listen to your doctors and try to learn as much about myeloma and the treatment process as possible. That being said, don’t listen to every Tom, Dick, and Harry that has something to say. Learn from your doctors and decide with them what is right for you. One of the main things I hope this program can do is help patients through this initial stage. If I can just help to spread information about myeloma and share my experience I hope that people facing the same situation will be more at ease.

Q: Why did you decide to start the John C. Davis Myeloma and Amyloidosis Program?

A: I started giving a lot of money to charities around the time I turned 60, and once I got diagnosed with myeloma it just felt natural to turn my attention toward fighting this disease. I figured with my personal experiences as a patient I would be able to help a program like this in many ways. I see myself as a resource, and I wanted to create a program that would allow others to get help and support both from a team of the best hematologists and from myself. I genuinely want any patient to feel free to talk to me or contact me with questions about my experience.

Q: Why did you choose Tufts Medical Center?

A: Once I met Dr. Raymond Comenzo and I saw the atmosphere at the hospital it was a done deal. I met with many staff members, and I was so impressed with everybody. It’s a team, like a big family. And it’s a smaller center so everybody is able to get involved and really care for each patient. Tufts isn’t like a big factory. Plus, knowing Scott and Cam Neely I already had my foot in the door. They introduced me to Dr. Comenzo, and he’s such a great guy that was really the clincher. With all the great people it just made sense to choose Tufts.

Q: Anything else you’d like us to know about the program?

A:  I would want people to know that I’m on call for them seriously any time. Anytime there’s a new patient if they have questions for me about the program or about myeloma in general, I would love to share my experience and try my best to answer any questions they may have. I know my name is on the program, but I’m still just a myeloma patient trying to help.