Multiple Myeloma Advocacy Sheet

By EmpowHER

Myeloma (multiple myeloma), is a hematologic cancer, which means it is a cancer of the blood. The American Cancer Society has estimated that there were 20,580 diagnoses of myeloma in 2009. Next to non-Hodgkin’s lymphoma, myeloma is the second most common blood cancer.

There rarely are symptoms early in myeloma; some may not get symptoms, and others may have vague symptoms that indicate other conditions. A correct diagnosis of myeloma often comes from a lot of testing in which results coincide to indicate the disease.

Symptoms of myeloma may vary widely, or may not lead to a cancer diagnosis but a different serious illness. If you experience a few of the following symptoms, it may be a good idea to get it checked out:
•    Bone pain (especially back, pelvis, ribs and skull)
•    Abnormal (monoclonal, or M) proteins in urine or blood
•    High-level of blood calcium
•    Persistent fatigue
•    Unexplained bone fractures
•    Weight loss
•    Weakness or numbness in your legs

If you and your doctor suspect you may have multiple myeloma, some questions you may want to ask could include:

What kinds of tests do I need? A blood or urine test may detect abnormal M proteins (M spike). Other tests may include imaging (X-ray, MRI, CT scan, or PET scan), or bone marrow examination. Once diagnosed, the doctor will determine the stage (I-III) of the disease.
What are treatments for myeloma? There is no standard treatment for myeloma. Steroids and conventional chemotherapy and more targeted (and less toxic) therapy may be used. Some targeted therapies are Revlimid, Thalomid, and Velcade. Other treatment options include high-dose chemotherapy and stem cell transplantation.
How can I find a specialist? A specialist in treating myeloma is a hematologic-oncologist. Your doctor may be able to recommend one, or your health insurance company may be able to help you find one. A web search for a provider at www.hematology.org (American Society of Hematology), or at www.cancer.net (American Society of Clinical Oncology) may also help. The Multiple Myeloma Research Consortium (MMRC, www.themmrc.org) also has top cancer centers around the country specializing in the treatment of myeloma.
I have these other health conditions. How can I best manage them together? If you have other health conditions, you will need to discuss with your doctor options particular to your case.
Are there any restrictions I need to follow? Your doctor may want you to restrict your diet prior to an appointment. Take an active role in your treatment. It is important to remain active during treatment as much as you can. If you feel well enough to do something, do it, but set reasonable goals for yourself, and take time to rest and be sure to eat well.
Will my insurance cover seeing a specialist? Should I get a second opinion? Be your own best advocate! If you want a second opinion, ask for one. Many doctors welcome a second opinion contrary to what you might think. Many insurance companies may cover additional testing performed by a different doctor if your doctor requests it. Some insurance companies even require a second opinion. The short delay taken in getting all the information to allow you to feel more confident and in control of your health in most cases will not be detrimental to your treatment.
Is there any research I can do on my own and what sources would you recommend? A cancer diagnosis can be overwhelming for you, your family and friends. Your doctor can suggest favorite reputable websites and support groups for obtaining more information and helping you and those around cope.
What about clinical trials? Your doctor will be able to let you know if there are any clinical trials that may benefit you. If you’re interested in participating in one, let your doctor know.

This information is not meant to be a replacement for talking with your doctor. Talk with your team of doctors to get the full picture for your particular case.

Resources:
www.mayoclinic.com Multiple Myeloma
www.medlineplus.com Multiple Myeloma
www.themmrf.org Living with Myeloma, Newly Diagnosed Patients

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Christine Jeffries is a writer/editor for work and at heart, and lives in a home of testosterone with her husband and two sons. Christine is interested in women’s health and promoting strong women.