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Winter 2005/2006 Volume 6, Issue 7:
My Life With Myeloma
By Robert Silman
It's important to know that you can lead a good life—and a long one—even with myeloma.
04.20.06

In April of 1984, at age 49, I had a routine annual physical that showed an elevated protein level in the blood. I felt great and had no symptoms whatsoever. However, my family physician was able to detect a tumor in the lymph system in my right axilla, the pyramidal space between the upper lateral part of the chest and the medial side of the arm. My childhood best friend was a doctor at Memorial Sloan-Kettering Cancer Center so, of course, I called him right away. He arranged for an appointment with a surgeon, and I was scheduled for a biopsy.

The biopsy revealed that the mass was a plasmacytoma in the family of multiple myeloma. The recommendation was to shrink the tumor with radiation, then remove it surgically. After six weeks of radiation, a CT scan revealed that the tumor size had not diminished. In August of 1984, I was scheduled for surgery. All the nodes in the axilla were found to be involved but there was a distinct single tumor that was quite large, about the size of a golf ball. The surgeon removed 40 to 50 nodes but said to me, "I didn't get them all." We realized that, although the presentation was at a single location, the disease was systemic.

My doctor informed me that a case such as mine had never before been seen at Memorial Sloan-Kettering Cancer Center and he recommended that I go to Mayo Clinic to see Dr. Robert A. Kyle, who was known to follow these kind of tumors. A month after my surgery, I traveled to Minnesota to see the wonderful Dr. Kyle. He looked at me and said, "You have monoclonal gammopathy of undetermined significance (MGUS). You've never had a symptom. You've had radiation, which I would have recommended as well because it normally works. Now, there's nothing to treat so I wouldn't do anything." I asked, "You mean that I should just live with this?" "Absolutely," he said, "Go home!" So, that's exactly what I did.

But I am just not the kind of person to go home and do nothing. I didn't know why I got cancer but I knew that there must be something I could do to improve my health. One obvious change I could make was to improve my diet. So I became a macrobiotic eater, eliminating all animal products, caffeine, refined sugars, and alcohol. From that point on, my diet has consisted primarily of grains, vegetables, and fruit.

Between 1984 and 1992, I saw Dr. Kyle at Mayo every 18 months and, in between visits, I would mail him a serum sample every 6 months. Over the years, my IgG levels continued to creep up but I still had no symptoms. In 1992, a CT scan revealed another soft tissue tumor adjacent to the right axilla in the super-clavicular area. My IgG levels had reached 3200 and Dr. Kyle decided that it was time for chemotherapy. I was very reluctant to start treatment but Dr. Kyle said, "If you were my brother, this is what I would recommend."

Dr. Kyle put me on 7-day cycles of melphalan and prednisone, followed by 6 weeks off treatment. The chemotherapy worked brilliantly! The protein numbers went down to 1500 and the tumor size shrank a bit. I had no side effects other than losing some sleep due to the prednisone. Actually, I felt even better during the chemo because the steroid made me feel quite pumped!

After the eighth treatment, my blood counts were no longer rebuilding fast enough for Dr. Kyle's liking, so he started me on another round of...doing nothing. Once again, with the passing years, my blood counts gradually climbed higher and my tumor increased in size. Other tumors appeared and, in 2000, one of the newer tumors began to grow at a rapid rate. Once again, I traveled to Mayo Clinic to see Dr. Kyle, and I was scheduled for surgery. The tumor removed at six in the morning, and I was out walking along the street of Rochester by noon.

Although Dr. Kyle has since retired from clinical practice, I continue to see him in the lab, and Dr. Philip Greipp has taken over my care. I've developed another tumor at the base of my neck that's quite large but it doesn't impair me, although it is beginning to interfere with my neck movements, such as when I drive and need to look over my shoulder. My M-spike is at 4.2 and my IgG is up to 4000.

Dr. Greipp noted that my numbers would normally indicate treatment but because I am such a healthy patient, and the Mayo approach is to treat each patient individually, he has opted to repeat the protocol of melphalan and prednisone that had worked so well for me in 1992.

It has been almost 22 years after my initial diagnosis. I am now 70 years old and I lead a normal, active life. I work every day as a structural engineer in a business I started 40 years ago. I exercise. I do a lot of cooking and food preparation for the family. Before the diagnosis, my idea of lunch was a slice of pizza in a phone booth at 3 o'clock in the afternoon while making business calls. Now, when I prepare food, I consciously think that I am doing something good for my health. My wife has made some adjustments to my new way of eating but she still enjoys a cup of coffee or a glass of wine. We have now been married for 50 years. We have 3 children and 5 grandchildren.

I give tremendous credit to Mayo Clinic for the excellent care I have received and for their approach to each patient as an individual, not a statistic. I am fortunate to have found Dr. Kyle and Dr. Greipp. And it was through Dr. Kyle that I found the IMF, which has been a wonderful educational resource. I know that I am very lucky to not have a typical presentation of myeloma. I also know that there are more and more long-term myeloma survivors out there. It's important to know that you can lead a good life—and a long one—even with myeloma.


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