After Treatment for Waldenstrom Macroglobulinemia
After treatment, your focus may shift to the long-term effects of Waldenstrom macroglobulinemia and its treatment, and concerns about what will happen if the cancer returns.
Current treatments for Waldenstrom macroglobulinemia (WM) are not likely to result in a cure. Most people are treated for some time, followed by a break and then more treatment when the disease comes back. It can be difficult learning to live with cancer that can return in the future.
No matter what your situation is, there are steps you can take to live well, both physically and emotionally.
Follow-up exams and tests
During and after treatment, it’s very important to go to all your follow-up appointments. During these visits, your cancer care team will watch for possible signs of WM coming back, as well as any side effects of treatments you’ve had.
What to expect during follow-up appointments
Follow-up visits often include careful physical exams and lab tests. You might also get imaging tests during some of these visits. How often you follow up with your care team will depend on your cancer, its response to treatment, and other factors.
A benefit of follow-up care is that it gives you a chance to discuss questions and concerns that come up during and after your treatments.
For example, almost any cancer treatment can have side effects. Some might last only a short time, but others can last longer or might not show up until months or years later. It’s important to report any new symptoms to your cancer care team right away, so that they can find the cause and treat it, if needed.
Your survivorship care plan
Ask your treatment team about creating a survivorship care plan. This plan might include:
- A summary of the diagnosis, tests done, and treatments given
- A suggested schedule for follow-up exams and tests
- A schedule for other tests you might need in the future, such as early detection (screening) tests for other types of cancer or tests to look for long-term health effects from your cancer or its treatment
- A list of possible late- or long-term side effects from your treatment, including what to watch for and when you should contact your health care team
- Diet and physical activity suggestions
Questions to ask after treatment
- Do I need a special diet after treatment?
- Are there any limits on what I can do?
- What other symptoms should I watch for?
- What kind of exercise should I do now?
- What type of follow-up will I need after treatment?
- How often will I need to have follow-up exams and imaging tests?
- Will I need any blood tests?
- How will we know if the cancer has come back? What should I watch for?
- What will my options be if the cancer comes back?
Staying prepared and organized
Even after treatment, it’s very important to stay organized and on top of your health. Keeping your records and health insurance coverage in order makes it easier to manage your follow-up care, future checkups, and any new concerns that may come up.
Keep your health insurance
It’s very important to keep your health insurance. Insurance can help cover the cost of follow-up visits, tests, and any care you may need in the future. No one wants to think about their cancer coming back, but it’s best to be prepared.
Save your medical records
At some point after your treatment, you might see a new doctor who doesn’t know your cancer history. Keep copies of your medical records so you can easily share the details of your diagnosis and treatment.
Late and long-term effects of treatment
Just as the treatment for WM requires an individual approach, so does follow-up care after treatment.
Adopting healthy behaviors such as not smoking, eating well, getting regular physical activity, and staying at a healthy weight might help prevent long-term health problems.
People who are treated for WM can be at risk for several health problems after treatment. The earlier problems are recognized, the more likely they can be treated. Your risk will depend on a few factors, including the types and doses of treatments you received.
It’s important to ask your cancer care team what health problems you might have, so you know what to watch for.
People who have been treated for WM are at a higher risk of developing some other cancers later in life.
- Bruton tyrosine kinase inhibitors (BTKs) have been associated with non-melanoma skin cancers.
- Treatment with some chemotherapies can damage the bone marrow and increase the risk of developing myelodysplastic syndrome (MDS) or acute myeloid leukemia (AML).
Of course, the risk of getting these second cancers must be balanced against the benefit of treating a life-threatening disease like WM.
People who have been diagnosed with WM tend to have higher rates of other types of cancer as well. This might be because people with WM can survive many years, or because of changes in the immune system of people with WM. These cancers include:
- Myeloma
- Lymphomas (cancers of the lymph nodes and immune system tissues)
- Leukemias (cancers of the white blood cells)
- Thyroid cancer
- Melanoma skin cancers
- Lung cancer
Anthracycline chemo drugs (daunorubicin, doxorubicin) can cause heart problems. For some people, echocardiograms to look at the strength of the heart muscle may be recommended to catch and treat problems early.
Ibrutinib (a BTK inhibitor) can increase the risk of developing high blood pressure or rhythm problems in the heart, most commonly atrial fibrillation. Other BTK inhibitors seem to cause less heart-rhythm problems.
Some people can develop damage to the nerves that control how the body moves and feels. This is called neuropathy. It can happen after treatment with drugs like:
- Vincristine
- Thalidomide
- Proteasome inhibitors (bortezomib, ixazomib, and carfilzomib)
Symptoms like numbness, tingling, or trouble walking may get better once you stop treatment, but in some cases these can be permanent.
Alkylating chemotherapy drugs (cyclophosphamide and bendamustine) can affect the ovaries or testicles and their ability to make hormones.
This can impact sexual desire or pleasure and, in younger individuals, can lead to early menopause or infertility. Low sex hormones, like estrogen and testosterone, can also have impacts on bone health, energy, and your brain’s ability to create new memories or complete a task.
If the cancer comes back
If your WM comes back (recurs) at some point, your treatment options will depend on:
- Where the cancer is located
- What treatments you’ve had before
- Your overall health
For more information on how recurrent cancer is treated, see Treating Waldenstrom Macroglobulinemia. For general information on recurrence, see Understanding Recurrence.
Social and emotional health after cancer
Once treatment is finished, a number of emotional concerns can come up.
Some of these might last a long time and can include:
- Dealing with any physical changes that happen because of treatment
- Worrying about the WM returning or new health problems developing
- Being treated differently or discriminated against by friends, classmates, coworkers, employers, and others
You might also feel:
- Resentful for having had WM
- Resentful for going through treatment when others didn’t have to
- Guilty for surviving cancer when other friends with cancer did not
It’s normal to have some anxiety or other strong emotions after treatment, but feeling overly worried, depressed, or angry can get in the way of relationships, work, and other aspects of life.
With support from family, friends, other survivors, mental health professionals, and others, many people who have been treated for WM can thrive despite the challenges they’ve faced.
If your feelings are getting in the way of your daily life, consider reaching out for support. The American Cancer Society is here to help:
- The National Cancer Information Center is available 24/7 at 1-800-227-2345 to discuss support resources in your community.
- The Cancer Survivors Network provides a safe online connection where cancer patients and caregivers can find others with similar experiences.
- Written by
- References
Developed by the American Cancer Society medical and editorial content team with medical review and contribution by the American Society of Clinical Oncology (ASCO).
Castillo JJ, Olszewski AJ, Hunter ZR, Kanan S, Meid K, Treon SP. Incidence of secondary malignancies among patients with Waldenström macroglobulinemia: An analysis of the SEER database. Cancer. 2015;121(13):2230-2236. doi:10.1002/cncr.29334
Castillo JJ, Treon SP. Chapter 92: Waldenstrom Macroglobulinemia/ Lymphoplasmacytic Lymphoma. In: Hoffman R, Benz EJ, Silberstein LE, eds. Hematology: Basic Principles and Practice. 8th ed. Philadelphia, PA. Elsevier; 2023.
Gertz MA. Waldenström Macroglobulinemia: 2025 Update on Diagnosis, Risk Stratification, and Management. Am J Hematol. 2025;100(6):1061-1073.
National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology: Waldenstrom Macroglobulinemia/Lymphoplasmacytic Lymphoma. v.1.2026-June 24, 2025. Accessed at https://www.nccn.org/professionals/physician_gls/pdf/waldenstroms.pdf on August 5, 2025.
Tam C, Thompson PA. BTK inhibitors in CLL: second-generation drugs and beyond. Blood Adv. 2024;8(9):2300-2309.
Last Revised: November 17, 2025
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