What happens after treatment for Waldenstrom macroglobulinemia?

Current treatments for Waldenstrom macroglobulinemia (WM) are not likely to result in a cure. Most patients are treated for some time, followed by a break, and then may be treated again when the disease comes back. Learning to live with cancer that does not go away can be difficult and very stressful. It has its own type of uncertainty. Our document, When Cancer Doesn't Go Away, talks more about this.

Follow-up care

Even during treatment breaks, your doctors will still want to watch you closely. It is very important to go to all of your follow-up appointments. During these visits, your doctors will ask questions about any problems you may have and may do exams and lab tests or x-rays and scans to look for signs of cancer or treatment side effects. Almost any cancer treatment can have side effects. Some may last for a few weeks to months, but others can last the rest of your life. This is the time for you to talk to your cancer care team about any changes or problems you notice and any questions or concerns you have.

Regular follow-up exams will be very important for you. Follow-up usually includes a careful general physical exam. They will also check how you are feeling. Be sure to tell your doctor about any new or persistent symptoms right away. Your blood counts, IgM, and beta-2-microglobulin levels will be checked. Blood chemistry tests to look at kidney and liver function will also be done. Other tests may also be done to see whether the abnormal antibody is causing damage to the kidneys, liver, or other organs. The choice of studies and tests depends on your symptoms and what treatment (if any) you have received.

It is important to keep your health insurance. Tests and doctor visits cost a lot, and even though no one wants to think of their cancer coming back, this could happen.

Should your cancer come back, our document, When Your Cancer Comes Back: Cancer Recurrence can give you information on how to manage and cope with this phase of your treatment.

Seeing a new doctor

At some point after your cancer diagnosis and treatment, you may find yourself seeing a new doctor who does not know anything about your medical history. It is important that you be able to give your new doctor the details of your diagnosis and treatment. Make sure you have this information handy:

• A copy of your pathology report(s) from any biopsies or surgeries
• If you had surgery, a copy of your operative report(s)
• If you were in the hospital, a copy of the discharge summary that doctors prepare when patients are sent home
• If you had radiation therapy, a copy of the treatment summary
• If you had chemotherapy (including immunotherapy and biologic therapy), a list of the drugs, drug doses, and when you took them

The doctor may want copies of this information for his records, but always keep copies for yourself.