When multiple myeloma, a cancer that affects a type of white blood cell called a plasma cell, stops responding to treatment, it’s called refractory multiple myeloma. Sometimes treatment works at first, but then the cancer resists treatment and begins to grow again. This is known as relapsed/refractory multiple myeloma (RRMM). It can affect you both emotionally as well as physically.
Responding to RRMM
It’s fairly common for multiple myeloma to come back. Research suggests that early relapse (coming back within 1 year of starting treatment) happens in about 16% of cases. It’s not clear why multiple myeloma often returns. But it may be because of genetic changes and toxic substances in your body that come with each new treatment or that stay around after previous treatments.
The diagnosis and treatment of any cancer can trigger emotional peaks and valleys. That’s understandable for you and your loved ones. But the hope that comes with treatment can often give you strength to get through those difficult months.
When you find out that your multiple myeloma isn’t responding to treatment, it’s only natural to become discouraged. And getting news that your cancer is growing again can certainly bring on a sense of hopelessness and even anger.
Predicting if or when multiple myeloma might return is almost impossible. That’s because the disease varies from one person to another. So if your doctors explained that it was likely it might come back, they couldn’t have known the timing or nature of a relapse.
And you shouldn’t blame yourself for relapsed/refractory multiple myeloma, even if you missed a treatment or didn’t strictly follow your diet and other lifestyle recommendations. You can do everything right and still have a relapse.
Finding Ways to Deal With Your Condition
You can handle your RRMM like you might any other serious news. As much as possible, try to surround yourself with friends and family who can provide emotional support. They can also help you with any medical needs or other things you have to do.
Treatment for RRMM can be tough. It’s OK to ask for help or take people up on their offers to lend a hand or simply spend time with you. Just having someone listen to you or help you talk through your emotions and concerns can take some of the pressure off.
Learning about relaxation may help relieve some of the stress and emotions, too. Mindfulness meditation, for example, is being used more as a way to help people with cancer manage the complications of treatment and disease progression. There are apps, online videos, and in-person classes that teach this type of meditation.
Slow, rhythmic breathing and the use of imagery may also help with emotional stress or the pain and discomfort of cancer and its treatments. To try imagery, you can close your eyes and think about a place or something you’ve done that made you happy, for instance. Then mentally put yourself there. It can help you feel calmer.
The language of cancer treatment can be hard to understand at times. But you may feel a little more in control – or at least not overwhelmed by news of your multiple myeloma coming back – if you can educate yourself about the disease and your treatment options. Write down your questions, and make sure someone on your care team answers them.
It’s also helpful to talk with health care providers about how to care for yourself during this time. Research suggests that going to self-management workshops and education sessions may help you with both the physical and psychological aspects of multiple myeloma relapse. Support groups made up of others with relapsed multiple myeloma can also show you helpful ways to deal with your condition and treatments you might not have tried.
Some self-care ideas include:
- Activities that’ll distract you from thoughts about cancer and treatment
- Planned daily rest times
- Staying hydrated
- Topical creams, gel soles, and acupuncture to deal with neuropathy, which is nerve pain, usually in the hands or feet, that can come with RRMM and some of its treatments
Try to help yourself by getting enough sleep and exercising regularly, if it’s appropriate. Exercise is linked to positive outcomes related to cancer recurrence and survival. Plus, exercise has also been shown to improve mood and quality of life in people with multiple myeloma.
Keeping track of symptoms, treatments, side effects, and other details about your health may also provide a sense of control.
New Treatments, New Hope
Coming up with more effective multiple myeloma treatments is an active area of research. And the results have been promising. In the past 2 decades, the approval of several new treatments have boosted average survival from 3 years to 8-10 years.
A 2022 report from the National Cancer Institute Multiple Myeloma Steering Committee says that while researchers continue to search for a cure, there is a strong possibility that multiple myeloma could soon become a treatable long-term condition, rather than an incurable disease.
If your multiple myeloma has come back, talk with your doctor about new treatment options or treatments that you have not tried. No cancer treatment is guaranteed to be effective, but work scientists have done in recent years is giving hope to oncologists and people who have RRMM.
While research into new treatments continues, you may want to be part of the effort. You could join a clinical trial. The National Cancer Institute (NCI) coordinates hundreds of multiple myeloma trials. Reach out to the NCI to find out more, and to learn if you might be a good fit for a treatment under investigation right now.
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Blood Cancer Journal: “Gaps and opportunities in the treatment of relapsed refractory multiple myeloma: Consensus recommendations of the NCI Multiple Myeloma Steering Committee,” “Lifestyle considerations in multiple myeloma.”
Cureus: “Evidence for the Role of Mindfulness in Cancer: Benefits and Techniques.”
Future Oncology: “Management of patients with difficult-to-treat multiple myeloma.”
Haematologica: “Multiple myeloma: the (r)evolution of current therapy and a glance into the future,” “Predicting risk of progression in relapsed multiple myeloma using traditional risk models, focal lesion assessment with PET-CT and minimal residual disease status.”
Integrative Cancer Therapies: “Effect of Exercise on Mortality and Recurrence in Patients with Cancer: A Systematic Review and Meta-Analysis.”
International Myeloma Foundation: “What Is a Clinical Trial?”
Journal of Clinical Nursing: “Living with relapsed myeloma: Symptoms and self-care strategies.”
Leukemia: “Early relapse following initial therapy for multiple myeloma predicts poor outcomes in the era of novel agents.”
National Cancer Institute: “Learning to Relax.”