Multiple Myeloma Survivor

Helping Others Find Knowledge and Hope

John Killip, DDS, is a retired dentist and academic who enjoys travel, woodworking and folk art. He believes it is his role as a multiple myeloma survivor to provide knowledge and hope for others facing the same diagnosis. To that end, he serves as a peer-to-peer patient mentor and is involved with many advocacy groups, including the Greater Kansas City Myeloma Support Group, International Myeloma Foundation and Multiple Myeloma Journey Partners.

 

I am a nine-year multiple myeloma survivor who was originally given a three-year prognosis. Throughout my treatment, I did not let the disease define me. I am a retired dentist and academic. I am a husband, father and grandfather. I am involved in many advocacy groups, educating and giving hope to others. In my advocacy work, I strive to learn about the people I meet. They are always more than their diagnosis, and so are you.

I learned about multiple myeloma in the first half of 2007, when I had kidney infections and bouts of pneumonia at age 64. My internist knew something else was going on and suggested multiple myeloma as a possible cause. He referred me to an oncologist, who took a bone marrow biopsy in October. I asked the oncologist to send the slides to a colleague and friend of mine, the oral pathologist at the dental school where I was associate dean.

Before I heard the results of the biopsy, my colleague reviewed the slides and asked if I’d like to know what he saw. I said yes and heard my diagnosis before my doctor told me.

That initial diagnosis was frightening, but I was fortunate to have very few bone lesions. My wife, Kathy, and I felt entirely confident in our treatment center right away. After the biopsy results, we had a three-hour appointment, during which we met the doctor, a nurse practitioner and all the financial people. I left with prescriptions for a few drugs and a referral for a stem cell transplant consultation.

I made the biggest request of Kathy during those first two months. The diagnosis came in October, and all four of our adult children would be home the next month for Thanksgiving. I decided not to tell them about my myeloma until I could share the news with everyone at once, in person. Waiting was challenging, but once I told my children, their outpouring of support was incredible. My youngest daughter, who was in college, folded a thousand paper cranes, a symbol of good luck, for me between Thanksgiving and Christmas Eve. She was a wonderful person to attend appointments with Kathy and me because she was a science major who understood the medical language and did not feel overwhelmed.

I started thalidomide (Thalomid), pamidronate (Aredia) and dexamethasone, a steroid. Of all those, the dexamethasone was the worst. It caused sleep and mobility problems. I worked with my medical team to develop a dosing schedule that helped manage the side effects.

In March 2008, I had an autologous stem cell transplant. On St. Patrick’s Day, I had high-dose chemotherapy. Kathy took a picture of me, edited the photo to turn the infusion bag green and sent it to our friends. The transplant was three days later. As a dentist, I was used to injections and wanted to inject the cells myself. The nurses honored this request, and I injected my stem cells through my port.

The chemotherapy made me feel weak and nauseated, and I had uncontrollable diarrhea and no interest in food.

At my 100-day appointment, I was declared in nearly complete remission. For the next four and a half years, I remained in medically managed remission with lenalidomide (Revlimid). I continued to work as associate dean at the dental school throughout treatment. Continuing to work gave me a sense of security, psychologically and financially.

In spring 2012, my plasma counts started to increase. I switched from lenalidomide to bortezomib (Velcade), which helped. Still, my doctor recommended a second transplant. I got opinions from three other doctors, and they all concurred. Even though the medication was helping, they recommended getting the second transplant while my body was strong instead of waiting until I had more problems.

That October, I had the second transplant, injecting the stem cells myself again. I had the same side effects as after my first transplant. Even so, my side effects were less severe this time, and my hospital stay was shorter.

The support from my family and friends amazed me, just as it had after the first transplant. Another of my daughters sent the outline of a hand to friends and family all over the world. They wrote words of encouragement on the hands and sent them to me.

A young family friend, a medical student who had a brain tumor, gave me the best advice: “Don’t let the disease control you. You control it.” That is such an important statement, and it’s one I pass on to others with myeloma.

At my 100-day appointment after the second transplant, I was declared in complete remission. Now I have bortezomib injections twice a month. I still have side effects, including neuropathy in my feet, legs and fingers. I feel a little hazy now and then, having to repeat information.

Once you’re in remission, you have to move on. What you do after cancer is the most important story you can tell. Although this disease is not curable, it is very treatable. Because of medical advancements, including stem cell transplantation and new medications, people with multiple myeloma can have a high quality of life.

 

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