In his own words: living with multiple myeloma

Mike was married with 3 children and a partner at a leading management consulting firm when he was diagnosed with multiple myeloma in 1990 at age 37. He has spent the past thirteen years fighting a personal battle with myeloma, raising a family, pursuing a challenging career, and working as a volunteer and advocate with the International Myeloma Foundation, the National Cancer Institute, the Eastern Cooperative Oncology Group, and the FDA.

What was your first sign that something was wrong? What symptoms did you experience?

Traveling to Hong Kong on business, I got off the plane after the long flight and found I was limping badly. When I got back to the US, I went to a sports medicine doctor who diagnosed it as sciatica and put me in physical therapy, which made me feel better. Six months later, I felt a crack while dancing, which turned out to be a plasma cell tumor breaking through the back of my pelvis.

What was the diagnosis experience like?

It was mind numbing. The initial shock was the need for major orthopedic surgery, involving removal of diseased bone and replacement with a donor graft, to be followed by radiation therapy. Once past that, there was the reality of myeloma, characterized as incurable with a median survival of 3 years.

What was your initial and then longer-term reaction to the diagnosis?

At first, I was overcome with grief and horror, as much for the upcoming surgical ordeal as the gloomy prognosis. Once through the surgery, though, I shifted my focus towards getting my life back, going so far as commuting daily between New York and Toronto to allow me to get my daily radiation treatments while working on a critical client assignment.

How do you manage multiple myeloma?

My approach to dealing with the disease has been vigilance and conservatism. I am very diligent about diagnostic tests (blood, urine, bone scans, etc.) to make sure that it doesn't sneak up on me again and cause major bone damage. And, I’ve been very conservative about treatments, avoiding the “hit it early, hit it hard” approach in favor of a minimalist strategy to knock the disease down when it rears its ugly head. That has meant using radiation repeatedly over the years in lieu of systemic therapy. It has meant selective use of low-dose systemic therapy (some chemo, some steroids, some thalidomide.) I harvested stem cells seven years ago but have not had a transplant. I’m in this for the long-term and trying to keep my options open, playing for time, because there is so much promising research—and I don’t have time to be sick!

Did you have to make any lifestyle or dietary changes in response to multiple myeloma?

I went through a phase where I was taking all sorts of vitamins, exotic mushrooms, and even shark cartilage. That ended when the next lesion appeared. I have endeavored to take better care of myself and live a bit more for the moment.

Did you seek any type of emotional support?

I did get some benefit from stress reduction and meditation classes. But working to help other myeloma patients has been the most rewarding experience. The support I received from the International Myeloma Foundation led me to make a serious commitment to volunteerism and advocacy to help others battling the disease. I lead two in-person support groups and an Internet listserv for myeloma patients and caregivers. Using the knowledge I’ve gained to help others deal with the disease helps me focus on the positive.

Does multiple myeloma have any impact on your family?

My wife and I decided early on that as long as I was able to function normally and not in immediate danger, we would not tell the children until they were older (the youngest was 7 when I was diagnosed.) We told them almost ten years later, which was quite a relief--hiding it was getting harder and harder. And, they’ve dealt with it well. We try to live our lives as if there was no myeloma. And, the “kids” (the youngest is now 19) seem to take their cues from us.

What advice would you give to anyone living with multiple myeloma?

There is no known cure for myeloma, but the disease is highly treatable, and there are more treatment options today then ever before, with many more in the pipeline. It’s possible to live many years with myeloma and to have wonderful quality of life. With the progress that has been made and the new treatments being researched, the day may soon come where myeloma can be managed as a chronic disease like diabetes. There is much reason to be hopeful and there’s no reason to put your life on hold.

As told to ]]>Diane Voyatzis, RD]]>