What happens after treatment for Waldenstrom macroglobulinemia?
Current treatments for Waldenstrom macroglobulinemia (WM) are not likely to result in a cure. Most people with WM are treated for some time, followed by a break, and then treated again when the disease comes back. Learning to live with cancer that does not go away can be difficult and very stressful. Our document When Cancer Doesn’t Go Away has more about this.
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 are having, and may examine you and get lab tests or imaging tests (such as CT scans) to look for signs of cancer or treatment side effects.
Almost any cancer treatment can have side effects. Some may last for only a short time, but others can last longer, possibly even for the rest of your life. Tell your cancer care team about any changes or problems you notice and about any concerns you have.
Follow-up visits usually include a careful physical exam. The doctor will also check how you are feeling. Be sure to report any new or ongoing symptoms. Your blood cell counts, IgM, and beta-2 microglobulin levels will be checked. Blood chemistry tests and other tests may also be done to see whether the abnormal IgM is damaging the kidneys, liver, or other organs. The choice of tests depends on your symptoms and what treatment (if any) you have received.
It is very important to keep your health insurance during this time. Tests and doctor visits cost a lot, and even though no one wants to think of their cancer coming back or getting worse, 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 your medical history. It is important that you be able to give your new doctor the details of your diagnosis and treatment. Gathering these details soon after treatment may be easier than trying to get them at some point in the future. Make sure you have this information handy (and always keep copies for yourself):
- A copy of your pathology report(s) from any biopsies or surgeries
- Copies of imaging tests (CT or MRI scans, etc.), which can usually be stored digitally (on a DVD, etc.)
- If you had surgery, a copy of your operative report(s)
- If you stayed in the hospital, a copy of the discharge summary that the doctor wrote when you were sent home
- If you had radiation therapy, a copy of the treatment summary
- If you had chemotherapy, targeted therapy, or immunotherapy, a list of the drugs, drug doses, and when you took them
- The names and contact information of the doctors who treated your WM
Last Medical Review: 10/20/2014
Last Revised: 01/28/2015