MYELOMA MYSTERY; RARE BONE DISEASE IN THE LEUKEMIA FAMILY SEEMS TO BE STRIKING YOUNGER AND YOUNGER.

Byline: Phil Davis Staff Writer

When 33-year-old Brian Novis first felt a twinge of pain in his back, he never suspected a rare form of bone cancer called multiple myeloma was dissolving the bones in his spine.

Why would he? Myeloma, a close cousin to leukemia, is almost exclusively a disease of the elderly, rarely striking people younger than 60. And there were plenty of reasons for him to have back pain - a past motorcycle accident, his love of competitive sports, even his mattress.

But a routine blood test found myeloma. And it killed him within four years.

Novis, a Los Angeles corporate recruiter, made the most of those years. Frustrated by a lack of information about the rare disease - and no solid explanation why it invaded his body at such an early age - Novis founded the International Myeloma Foundation, a clearinghouse of information for doctors and patients.

His death wasn't just a statistical anomaly. Researchers tracking myeloma have noticed a disturbing demographic shift as the disease increasingly attacks younger people - anywhere from age 20 to 50 - who used to account for only about 2 percent of the roughly 13,700 new myeloma cases diagnosed each year in the United States. According to Dr. Brian Durie, director of the myeloma clinic at Cedars-Sinai Comprehensive Cancer Center, the number of young people getting myeloma is now close to 15 percent of all new cases.

``The demographics seems to be changing a little bit,'' Durie said. ``This raised the question: Are there some new things causing myeloma? We haven't had time to change genetically, so it would seem to be something in the environment.''

One of the more intriguing suspects in this medical mystery is a monkey virus that was mistakenly incorporated in polio vaccines developed in the late 1950s. Durie and Dr. Howard Urnovitz, a chronic illness expert from Berkeley, suspect the virus - Simian Virus (SV) 40 - may be some sort of ``toxic trigger'' that activates cancer in people who have a genetic predisposition to cancer, or those who have been exposed to toxins such as pesticides, petroleum chemicals or even Agent Orange, the highly toxic chemical used to strip away the jungle canopy during the Vietnam War. Agent Orange is directly linked to myeloma.

SV 40 seems to be harmless in most people, which is good news considering roughly 98 million Americans could have received the tainted polio vaccine between 1955 and 1963, Durie said.

But the virus seems to be active in the blood of most myeloma patients who fall into the younger age bracket. Exactly what this means is still under investigation. Durie has recruited Dr. Luc Montagnier, the scientist instrumental in the discovery of HIV, to work on this chemical mystery.

They hope to one day develop a vaccine that will shut down the SV 40 virus. It could be a step toward cracking the complex genetic mystery that causes people to get diseases, from the flu to multiple myeloma.

Multiple myeloma causes uncontrolled growth of plasma cells produced in the bone marrow. The abnormal cells compromise the body's immune system and form tumors in multiple sites throughout the body that can dissolve bones, leaving them so brittle that simply rolling over in bed can result in a fractured hip.

It affects between 50,000 and 100,000 people in a given year. And while it's not always fatal, many patients diagnosed with myeloma survive only three to five years, possibly because early detection is difficult.

The symptoms are easy to miss. The bone pain commonly associated with myeloma is often mistaken for osteoporosis or simply back pain. Only full-body X-rays, which are rarely used to diagnose back problems, reveal the dark spots and crippling spine compression that are hallmarks of myeloma.

The disease also shows up in lab tests as anemia and hypercalcemia, a condition where excess calcium is released as bone dissolves. Myeloma is sometimes - but not always - characterized by high levels of protein in the blood, another sign bones are being broken down. Each case is different.

In 1984, Steve Matten of Mission Viejo had no signs of excess protein in his blood, despite the fact his bones were being damaged.

``Basically, for a long time, I was treated just as a middle-aged back patient until it didn't get any better and my wife demanded they do an MRI and figure out what was wrong with me,'' he said. ``I was in the hospital that night. My spine was almost compressed.''

Doctors found a myeloma tumor in Matten, and more tumors were found in 1996.

A stem cell transplant operation drove the cancer into remission. But the controversial procedure - the most aggressive therapy available - is tough on a patient because of severe side effects as doctors destroy the patient's bone marrow and replace it with healthy marrow.

``I'm getting on with life,'' said Matten, 47, a computer programmer raising five children. ``Myeloma is not a death sentence. Even though they say it's not curable, life isn't curable. We're all going to die some way or another, and that doesn't stop us from going on. Whether it's myeloma or breast cancer or any other tragedy that strikes a person, it's not the end of the world. Fight long and hard. Fight the good fight.''

Bob Brown, a 62-year-old Reseda resident, has been fighting the good fight since January 1997.

He didn't have any problems with his bones. Doctors first thought he was suffering from simple anemia, an iron deficiency in the blood that causes fatigue. It wasn't until iron tablets failed to bring his blood content back to normal levels that doctors conducted further tests. They found multiple myeloma.

The disease is so rare that a typical hematologist-oncologist, a specialist in blood cancers, may see only one to two cases, if any, in a year.

In Brown's case, the disease is ``smoldering,'' so he has been spared bone problems. But myeloma has recently attacked his kidneys, leaving them functioning at only 20 percent of normal. He's coping by taking an active role in his treatment, exploring a variety of medical options and networking with other cancer patients. It keeps him hopeful - but realistic.

``Knowledge is very helpful,'' Brown said. ``I'm thankful for each day. The key is reaching out. It's in your face every day anyhow, so I think sharing and dialogue help.''

Brian Novis had that thirst for answers, too. When he was diagnosed in 1988, he and his wife, Susan, were frustrated by the lack of information and funding for research on myeloma. They founded the International Myeloma Foundation in their hillside house in 1990, and Brian Novis ran it from his home hospital bed until his death at age 37 in 1992.

``We felt so alone and frightened,'' Susan Novis said. ``We very quickly found out there wasn't a whole lot of information available for multiple myeloma patients. We didn't even know about this disease, and when you don't know about something, it becomes even scarier.''

Susan Novis is continuing her late husband's work, devoting herself full-time to running the International Myeloma Foundation, which dispenses information and seeks funding for research.

``It's not a highly prevalent disease, but it's on the rise, and it's something we need to be thinking about,'' she said. ``And I think the public in general needs to be thinking about things we can do in our day-to-day life to make this a safer world to live in.''

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5 Photos

PHOTO (1 -- cover -- color) Dr. Brian Durie, researcher at Cedars-Sinai Cancer Center.

(2 -- 3) An image of a normal spine, left, is contrasted with one that is starting to collapse because myeloma cells have destroyed bone tissue.

(4) Bob Brown diagnosed with multiple myeloma in 1997

(5) The darkened circle at the top of the skull indicates significant bone damage caused by multiple myeloma.