Living with relapsed and refractory myeloma
Fact-checked by A multiple myeloma diagnosis can turn your world upside down, and when the disease progresses to relapsed and refractory multiple myeloma (RRMM), it can feel like you’re facing the disease in a completely new way. New symptoms, changing treatment plans, and uncertainty about what comes next can feel overwhelming.
Understanding what RRMM is, how your symptoms may change over time, and how your treatment options may evolve can help you feel more informed and prepared moving forward.
What is relapsed and refractory myeloma?
Multiple myeloma is a progressive, incurable blood cancer that causes plasma cells to grow out of control. Over the course of treatment, it’s common to experience cycles of remission, in which signs and symptoms of disease activity ease or disappear, followed by relapses, or a return of symptoms.
While treatments for multiple myeloma can often slow disease progression, the disease will eventually progress to RRMM. This umbrella term is used to describe myeloma that initially responded to treatment or went into remission, but later returned (relapsed) or ceased responding to treatment (refractory).
How symptoms progress
Common symptoms of multiple myeloma include bone problems, hypercalcemia (high blood calcium levels), renal dysfunction, and anemia (lack of healthy red blood cells). As the disease progresses, these symptoms might become more pronounced and lead to other problems, such as fatigue, weakness, gastrointestinal problems, reduced appetite, and weight loss.
However, no two myeloma cases are exactly alike and not everyone will experience these symptoms. The timing and pattern of remission and relapse can also vary from person to person.
How treatment develops over time
The initial, or first-line, treatment for newly diagnosed multiple myeloma typically involves a three- or four-drug combination. In many cases, this treatment can keep the disease under control for up to five years.
However, there may come a point when your care team determines that the first-line treatment has stopped working. At this stage, relapsed myeloma treatment options might need to be reevaluated.
Second-line and later treatments can vary significantly between individuals depending on factors such as treatment tolerability, age, overall health, and responsiveness to previous therapies. A personalized treatment approach may also allow you to have more influence on how myeloma is managed after relapse.
Daily living with RRMM
After a period of remission, adjusting to living with relapsed myeloma can be difficult. Proactive self-care is an important part of RRMM management, and you and your care team should discuss incorporating self-care into your treatment plan early on.
Fatigue is one of the most common symptoms of RRMM, but there are ways to help manage it.
Strategies that may help conserve energy and support better sleep include:
- getting enough rest and building breaks into your day when needed
- pacing activities throughout the day
- keeping your bedroom dark and quiet at night to support better sleep
Maintaining a daily routine during treatment can also be challenging, but routines may support physical and emotional well-being and make daily life feel more manageable. Try to include social interaction with friends, family members, or other support systems in your daily life.
Managing uncertainty, side effects, and decisions
One of the most difficult aspects of RRMM is living with uncertainty. Making decisions about treatment can feel especially overwhelming. While uncertainty cannot be removed completely, support from loved ones, support groups, or a therapist can help you navigate decisions and better understand your priorities and goals.
Managing side effects is another important part of RRMM care. Advances in treatments have extended life expectancy for many people living with myeloma, making it increasingly important to discuss the balance between treatment effectiveness and quality of life with your care team.
Questions to ask after a relapse or refractory diagnosis
After an RRMM diagnosis, it can be empowering to take a proactive role in your treatment. Arriving at appointments with questions can help you make the most of your time with your healthcare team.
Consider asking the following:
- How will my treatment change now that my myeloma has relapsed or is refractory?
- What treatment options do I have, and how do they compare?
- How will I know if the treatment is working, and what happens if it stops working?
- What are the short- and long-term expectations for my treatment?
- Who on the care team should I contact if my symptoms change or worsen?
- Are there clinical trials I should consider?
- What support resources are available for my family and me?
RRMM treatment is entering a new era, and innovative therapeutic strategies are giving people options that would have been unthinkable just 10 years ago. Although living with RRMM can bring physical and emotional challenges, ongoing advances in treatment continue to expand your options for care and symptom management.
As you work with your care team to create a treatment plan, make sure they understand your goals, priorities, and wishes. This can help them identify the most appropriate treatment approach for you while supporting the quality of life that matters most to you.
Rare Cancer News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
