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June 2003 Volume 5, Issue 6:
Q&A: Get Your Questions Answered

This issue of Myeloma Today is sponsored in part by an unrestricted educational grant from Novartis Pharmaceuticals.

The IMF is happy to announce a new feature of the Myeloma Minute, the Question of the Week. Each issue features a question that has been recently addressed to the IMF Hotline. Our answers are not intended as medical advice, but as information to discuss with your doctor.

Q: I have just been diagnosed with what my doctor called "non-secretory" myeloma. He says that the only way to monitor how well my treatment is working is to do repeat bone marrow biopsies. This sounds awful to me. Do you know if there is any other way to monitor my myeloma?

A: About 1-3% of myeloma patients do not make enough abnormal (monoclonal) protein to be monitored by standard blood and/or urine tests. This group of patients is difficult to diagnose and to monitor during treatment. Within the past year, an important new test — the Freelite test — has come on the market. It is extremely helpful for diagnosing and monitoring these patients. It also useful for monitoring patients with amyloidosis.

With the Freelite test, pproximately 70% of the patients formerly thought to have non-secretory myeloma test positive for the presence of free light chains (i.e. Bence-Jones protein) in the blood. What this means is that the majority of patients with non-secretory myeloma have low-level Bence-Jones myeloma that has gone undetected with previous tests. The very sensitive Freelite test enables doctors to diagnose these patients and to monitor them with greater accuracy during treatment, remission, and relapse.

The Freelite test should not be confused with an older test called "Serum Light Chain Analysis." The older serum light chain test is rarely if ever administered because it is not particularly useful. The new Freelite test will have the name "Ultraquant" on the lab report. If your doctor is unsure where to order the test, please call the IMF hotline at (800) 452-2873, and we will be happy to give you information on how to locate these labs.

If you fall into the 30% of non-secretory patients who do not produce free light chains that can be picked up by a Freelite test, your myeloma may be assessed by full skeletal xrays as well as by whole body PET scan or by wide field MRI screening of the spine, thoracic area, lumbar region, and pelvis. The scanning is more sensitive and more specific than x-rays for detecting small bone lesions.

Although myeloma patients cannot, of course, do away with bone marrow biopsies altogether, the above tests make it possible to monitor non-secretory disease without relying upon a biopsy that can be painful and invasive. Because myeloma tends to "clump" in the bone marrow, a bone marrow biopsy is not always the most reliable way to monitor response to treatment.

Q: My grandmother died of multiple myeloma and now my dad has been diagnosed with this disease. Can you tell me if myeloma is hereditary?

A: There is only a weak family tendency to develop myeloma. Approximately 3-5% of patients with myeloma give a history of myeloma or a related blood/bone marrow condition within the extended family. Thus far, no specific gene has been linked to this myeloma tendency. Genetic research in families with more than one member who has developed myeloma can provide important clues about what causes myeloma. The IMF is conducting "Familial Myeloma" research as part of a new genetic research program called Bank on a Curetm (BOACtm). In this project, families will be studied to correlate DNA results with medical history and thus identify genes linked to myeloma.

What can you do right now if there is a history of myeloma in your family? Become informed about myeloma and its symptoms. When family members visit their physician for their annual check-up, make sure they tell the doctor about your family medical history. Standard laboratory blood work will indicate an increase in protein, and the doctor will have a note in the medical chart so that any protein increase will be properly evaluated.

Anyone interested in further details should call the IMF at (800) 452-2873. To learn more about BOACtm go to www.myeloma.org. Results of this project will be critical to the understanding of both why myeloma occurs and how best to treat the disease.

It is the IMF's goal to provide the most current, up-to-the "minute" information to our members. The Myeloma Minute, a free weekly e-mail newsletter, is a great way to stay abreast of the latest developments in the treatment, management, and prevention of myeloma. We encourage patients, caregivers, friends, family members, and physicians to sign up for the Myeloma Minute at www.myeloma.org/myeloma/myeloma_minute.jsp.

If you wish to submit a Question of the Week, please write to us care of the Myeloma Minute or call (800) 452-CURE.

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