Living with multiple myeloma (MM) can bring many different challenges. Symptoms such as fatigue, pain, neuropathy (nerve damage), dizziness, and weakness may affect daily activities, while treatment side effects and uncertainty about lab results can add another layer of stress.

Recently, we asked MyMyelomaTeam members which challenge currently has the biggest impact on their daily life. Their comments showed that physical symptoms and treatment effects often overlap with uncertainty about remission, relapse, and future treatment. Member poll results reflect individual experiences and aren’t medical guidance.

Nearly half of respondents chose symptoms or side effects. More than a third selected uncertainty or watching their numbers, making it the second-most common response.

In the comments, fatigue and neuropathy came up often, but so did the emotional strain of waiting for blood tests, wondering how long remission will last, and thinking about what treatment might be needed next.

For many MyMyelomaTeam members, both myeloma symptoms and treatment side effects affected day-to-day life. Fatigue, pain, neuropathy, dizziness, balance problems, and other issues could make walking, household tasks, and usual routines more difficult.

One member described how neuropathy and fatigue had changed their pace: “The neuropathy in my feet and not being able to do things like I used to,” they wrote. “I get tired and have some pain very quickly, so I have to stop and rest. It takes me longer to get things done.”

“I get tired and have some pain very quickly, so I have to stop and rest. It takes me longer to get things done.”

 

— A MyMyelomaTeam member

Another MyMyelomaTeam member described dealing with both the effects of myeloma and treatment: “The biggest current challenge that I have with myeloma is the back pain and stiffness in my lumbar region that is mainly from the MM damage to my spine, as well as the side effects of chemotherapy medications.”

These challenges can affect comfort, mobility, and independence. If new or worsening symptoms or side effects are making daily activities harder or affecting safety, consider talking with your healthcare team about what may be contributing and what could help.

Other common themes around symptoms and side effects included:

More than a third of respondents said uncertainty or watching their numbers was their biggest challenge. Members described paying close attention to blood work, waiting for biopsies, and worrying that changes might mean relapse or a need for a new treatment.

One MyMyelomaTeam member said, “I’m in first remission and doing well. Every month, I’m anxious to read and compare my numbers. I’ve learned to just watch the trend rather than staring at the numbers.”

“Every month, I’m anxious to read and compare my numbers. I’ve learned to just watch the trend rather than staring at the numbers.”

 

— A MyMyelomaTeam member

Another member described how even being in remission didn’t always quiet the worry: “In remission and always thinking about it coming back.”

A relapse occurs when multiple myeloma returns after a period of remission. But an individual lab result or potential symptom of relapse doesn’t tell the whole story. Your hematology or oncology team can help explain which numbers matter most in your situation and how they fit together.

Other common themes related to uncertainty and watching numbers included:

About 9 percent of respondents chose finding the right treatment or next step. Comments showed that these decisions could feel especially difficult after a relapse, when a treatment stopped working, or when more than one option was available.

One member shared: “I have reached my first relapse and choosing the next treatment weighs very heavily on my mind. Luckily, there are a couple of encouraging choices at this time.”

“I have reached my first relapse and choosing the next treatment weighs very heavily on my mind. Luckily, there are a couple of encouraging choices at this time.”

 

— A MyMyelomaTeam member

Another MyMyelomaTeam member described their uncertainty about how long they’d be on their current treatment and what their next one might be. “I am uncertain how the haematologist determines what the next line of treatment is and what is that based on? Previous patient experiences? Experimental? Latest best available treatment?”

Questions about the next step may depend on treatment history, overall health, test results, and other individual factors. These decisions are best made with a myeloma specialist or oncology team through shared decision-making.

Other common themes around treatments included:

The “something else” responses and broader comments showed that myeloma can affect life in ways that don’t fit neatly into the poll options. Members described medication costs, secondary health problems, loss of independence, and the lasting effects of previous illness or treatment.

One MyMyelomaTeam member raised a concern about drug costs: “My drug cost would be over $14,000 per month. I make $3,000 per month. What are my alternatives?”

“My drug cost would be over $14,000 per month. I make $3,000 per month. What are my alternatives?”

 

— A MyMyelomaTeam member

Another member described how having several health conditions at once could make symptoms harder to interpret. With monoclonal gammopathy of undetermined significance (MGUS), heart disease, and a history of stroke, similar problems could have more than one possible cause: “There are similar symptoms from the three main issues … strength, balance, nerve damage.”

Your oncology team, primary care professional, pharmacist, or social worker may be able to help sort through symptoms, medication questions, and financial resources.

Other common themes included: