Multiple Myeloma Survivor

Earth “angels” help survivor face multiple myeloma

When Doug was diagnosed with multiple myeloma at 58, his only symptom was persistent neck pain. He credits the people he calls “angels” with helping him from diagnosis through recovery. He became a volunteer with Friend for Life Cancer Support Network to help others facing a similar diagnosis.

Three months before I developed persistent neck pain, my annual physical and my bloodwork results had been normal. I attributed the pain to getting older and being an active club cyclist who rode about 2,500 miles each year. When I saw my doctor about the continuing pain, he suggested a CT. At the time, my insurance plan had a high deductible, so I put it off because I didn’t think the discomfort was serious enough.

Six months later, I developed severe constipation and returned to my doctor. He wanted to do a CT of my abdomen, so I agreed. The next day, he called with the results — multiple lytic lesions in the pelvic area. After ordering another CT, this time with contrast, he told me I needed to see an oncologist/hematologist and he could get me into one in three weeks. I didn’t want to wait, so I called a lifelong friend who was also a doctor. He is my first angel. He set up an appointment with a specialist for the following day at 7 a.m. He was by my side like a brother throughout my treatment.

More imaging scans showed holes everywhere in my bones. Blood work and a bone marrow biopsy confirmed they were caused by light-chain multiple myeloma that had metastasized to my ribs and cervical spine, which explained the pain.

Ten sessions of radiation therapy to my neck and ribs were highly effective. Then, I started a three-drug regimen. After three cycles, I developed a reaction to one of the drugs, so my oncologist discontinued the medication he suspected was causing the reaction. I stayed on the two-drug regimen and reached remission.

Further testing revealed I had the TP53 deletion on chromosome 17, which meant my myeloma was high risk. So, the next step was an autologous stem cell transplant. Preparing and going through the transplant wasn’t easy physically or emotionally. I lost all interest in things I used to enjoy, such as cycling, photography and music. On top of that, my family and I had recently moved to a new neighborhood where we didn’t know anyone.

My social worker brought in my second angel, a psychiatrist specializing in behavioral oncology, who surprisingly was someone I already knew from being involved with Bike to Beat Cancer. She helped me conquer the anxiety and depression that can come with a cancer diagnosis.

My third angel was a neighbor in my new neighborhood. I was out walking and met her. Coincidentally, she also knew me from my bike club. She shared that she was a breast cancer survivor. She ran her own landscaping business and one day, I saw her mowing my lawn! I was so moved and grateful.

A fourth angel showed up as a neurosurgeon. One doctor had emphatically suggested I needed a spinal fusion in my neck. This frightened me. Two days later, I met with the neurosurgeon who said that neck surgery wasn’t necessary, which saved me the time, expense and pain during recovery. We are still friends today.

After treatment and the transplant, I am happy to report that I’m in remission, going on four years, and take a maintenance medication to prevent a relapse. I feel good and feel blessed to have had the support of my “angels” who helped me along the way. Of course, that includes my wife and other family members who helped me in numerous ways. In subsequent FISH testing, the TP53 mutation was no longer apparent. I cannot explain why. I just credit my medical team for extending my life.

Today, I give back by supporting others with multiple myeloma through Friend for Life Cancer Support Network. Talking with someone who had cancer was very helpful and encouraging to me, especially when I was at my low point. I try to help others in the same way. I truly believe I was surrounded by angels.