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Summer 2005 Volume 6, Issue 5:
Patient Perspective: A Conversation with Tim and Donna Egan
Donna: I have always led a very healthy lifestyle and have never had any major illnesses. My mother died at age 61 of a heart attack. My father’s health was good and he lived until he was almost 90. Then one day in 1992, I started feeling like I had caught the flu. When I started vomiting, it was time to go see my general prac-titioner. One of the tests she ran showed that my creatine level was elevated, and she promptly referred me to a nephrologist. By that time, my creatine was measured at 17 mg/dL, very high when you consider that normal values for an adult female are generally in the range of 0.5-1.1 mg/dL. The nephrologist put me in the hospital and ran a bunch of tests. In November of 1992, a bone marrow biopsy revealed the M-protein. The diagnosis was multiple myeloma.

Tim: We were led to believe that Donna had six months or so left to live. The prognosis was not good.

Donna: They told me I was on my way out. At that time, I was asked if I would be willing to participate in a study by the Southwest Oncology Group (SWOG). I thought that I was dying anyway, and felt that this would be one way for me to help others with myeloma. The study was run by Dr. Sid Salmon out of Arizona. Dr. Brian Durie was working on that study as well.

Tim: A diagnosis of myeloma is a family affair. Being a hospital administrator by trade, I was somewhat familiar with myeloma, and I certainly used all the resources at my disposal to gather more information. But in 1992 the resources available to myeloma patients were limited. However, I found the IMF, and its Board of Directors and its consulting physicians were all very helpful. Brian Novis had just passed away from myeloma. Susie Novis was a great help and shared a lot of materials and information with me. I also combed through medical books on my own. We found a local oncologist and Donna started receiving both dialysis and chemotherapy at the same time. She was placed on the VAD (Vincristine, Adriamycin, and Dexamethasone) protocol.

Donna: I did nine sessions of VAD and although it certainly had its bad moments, I tolerated it reasonable well. My creatine level started to drop and, eventually, I was able to get off dialysis. Another bone marrow biopsy was performed in June of 1993. The great news was that my myeloma was in remission.

Tim: I believe that early diagnosis, as well as education and quick and effective treatment, are all vital to a good outcome.

Donna: In June of 1993, I was started on low-dose alpha interferon maintenance (0.3cc three times a week), which continues to this day at the same dosage and frequency. I am still part of the SWOG study. Most of the time I feel pretty well. When I don’t, it’s usually because I’m trying to do too much. For me, rest and relaxation is key to helping me cope, so I try to do things for myself that make me feel better.

Tim: Every six weeks, Donna has her blood work done. Every three months, she sees her oncologist. And every three to four months, she has the 24-hour urine test done.

Donna: I am now starting my thirteenth year in remission. I feel very lucky, and I would like to encourage newly diagnosed patients to try and keep a positive outlook. Don’t give up. Stay strong. I am living proof that when they say it’s over, it’s not necessarily over. I will be 65 in August and I was 52 years old when I was diagnosed with multiple myeloma. I am seeing a time in my life that I never thought I’d see.

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