Living With Multiple Myeloma

Posted on October 14, 2021

Medically reviewed by
Todd Gersten, M.D.

Article written by
Anastasia Climan

Multiple myeloma is a cancer of plasma cells. This disease can present a variety of challenges, but people with multiple myeloma can experience productive and fulfilling lives by proactively managing their condition. Although no two journeys are the same, there are many ways to make navigating life with multiple myeloma easier.

Exercise

Regular physical activity has been shown to benefit people with myeloma in many ways. Exercise can help reduce fatigue and sleep problems. However, fractures are more common for people with multiple myeloma, so you may not be able to participate in the same types of exercise you once enjoyed. In addition, staying hydrated is crucial when you exercise.

Members of MyMyelomaTeam often share tips and resources for staying active. “I do Silver Sneakers online,” one member wrote. “It has helped me so much. I do it three days a week. You can do it standing up or in your chair. It’s live-streamed through Facebook. I think it has helped with the pains in my legs. At any rate, I feel better mentally, as well.”

Another member explained how they approached exercise safely: “My oncologist gave me a referral for physical therapy. My physical therapy was personally set up to match my physical capabilities. Everyone, please remember to try and not worry about someone pushing you too hard. My therapist was very understanding and compassionate. She worked on my balance, leg strength, and arm strength after an interview and review of my multiple myeloma and background.”

Managing Stress

Multiple myeloma complicates the already demanding areas of daily life. The stress of high medical costs combined with pressure to keep up at work and home can feel like too much to cope with by yourself. Fortunately, support groups are available in person and online to offer advice from others dealing with similar challenges.

Self-care is crucial before, during, and after myeloma treatments, such as radiation therapy or chemotherapy. Prioritize essential elements like healthy eating, restful sleep, and counseling as needed to preserve your well-being and quality of life.

Smoking

Myeloma can be a stressful diagnosis, and smoking is a tough coping mechanism to quit. Several members on MyMyelomaTeam are working on quitting. Hearing the struggles that others face will show you that you’re not alone.

“I’m trying. I really want to stop,” one member wrote. “The thing is, I didn’t start again until after I got cancer. I feel so bad. I’m hurting my kids and myself. Why can’t I stop? Why is the urge so bad? I just don’t get it. I’m not weak, but I feel that I am with this.”

Another member stated, “I’m having a rough time trying not to get cigarettes. Even though I have not had any for a couple of months, my desire seems to have gotten stronger. It’s bad when you dream of smoking. I’ve been really depressed lately, and my mind is going different places and won’t stop spinning. I know I’ve talked about this. I’m sorry, I just don’t have anyone else to talk to. I need some help with this.”

Quitting is a challenge, but it’s important to keep in mind that every bit of progress is a win. “So, this is my second day without smoking, and I’m proud of myself,” one member wrote. “Treatment has my myeloma down over 50 percent.”

How To Talk About Myeloma With Friends, Family, and Co-Workers

Hiding the side effects of myeloma treatment from people you regularly spend time with can be difficult. You may experience appearance changes, extreme fatigue, moodiness, and gastrointestinal problems. If you have a suppressed immune system, you might need to avoid high-risk environments and large groups. Openly communicating with others may help set you free, but only when you feel ready to do so.

Navigating Family Life With Myeloma

The roles and responsibilities you have at home may need to change depending on your current stage of myeloma treatment. Don’t be afraid to reach out for help from relatives and friends for tasks such as grocery shopping, meal prep, cleaning, lawn care, driving kids to activities, or even helping out with homework after school. There may be times when your partner will need to step into the role of caregiver. If your family is having trouble adjusting to the changes, meeting with a family or relationship counselor can help you work through the logistics and emotions involved with keeping your household running smoothly.

Working With Myeloma

A myeloma diagnosis is a significant life change that may affect your occupation and career path. A flexible work environment that includes a part-time schedule, available time off, and remote work can be ideal as you go through the ups and downs of treatment. If your current workload becomes unmanageable, but you don’t want to find a different job, start by speaking with your manager to determine if reasonable accommodations can be made. The Americans with Disabilities Act National Network has resources that can explain your rights.

Parenting With Myeloma

Multiple myeloma rarely occurs in people under age 45. Therefore, it’s not unusual to have had children before you learn about your diagnosis. Finding opportunities to discuss cancer with loved ones can be hard. However, speaking to your kids about your diagnosis sooner rather than later will open up the conversation, giving them time to adjust, ask questions, and express their concerns. You’ll also be able to make sure they hear the news from you rather than from another relative or a friend.

If you have multiple children of different ages, you may choose to share more or less information individually, depending on their maturity level. There are circumstances when it also makes sense to share your diagnosis with your child’s school. Their teachers can help keep an eye out for signs of stress, and guidance counselors may be able to provide extra support.

Financial Burden

Cancer treatment can feel like a whirlwind of unexpected costs. Meeting with specialists, having a variety of tests, and being prescribed a range of medications can make it hard to keep track of your medical bills. Health insurance may help, but it doesn’t usually cover everything. If you have a high-deductible plan, you may end up paying quite a bit out of pocket before any assistance kicks in.

Although financial stress seems unavoidable, the problem is, unfortunately, widespread. Ask your oncology health care team to speak with someone in your hospital’s billing department. You may be able to apply for financial assistance or a payment plan to ease the burden. Be sure to communicate with your insurance carrier to help anticipate the costs of different treatment options before they come through. There are several avenues you can explore for help with medical bills. Never allow the cost of treatment to deter you from getting the cancer care you need.

Costs for your myeloma treatment will be much more affordable if you have some form of public or private health insurance, including the following:

• Medicare
• Medicaid
• Veterans Affairs health care
• Individual health insurance through the marketplace
• Job-based health insurance

If you do not have health insurance, or if you have insurance but need further support, you may find resources within your state to help cover medication costs. Some of the programs available include:

• Medicare Savings Programs
• Medicare Extra Help
• State Pharmaceutical Assistant Programs
• Patient Access Network Foundation
• The HealthWell Foundation

You may want to talk with a Medicare advisor or social worker about programs you may be eligible for that can help offset the costs of myeloma treatments.

Disability Benefits for Myeloma

Social Security Disability Insurance and Supplemental Security Income are two federal programs that may offer assistance for people with myeloma who are unable to work. Ask your health care team for a referral to a social worker to find out whether you qualify for one of these programs and how to apply.

Tips for Traveling With Myeloma

Many people with myeloma (especially those with low white blood cell counts) are on heightened alert about the potential spread of germs on airplanes.

One member of MyMyelomaTeam described their concerns. “It’s especially easy during this holiday season to catch a cold. My wife and I decided not to travel by airplane for the holidays. In addition to catching a cold from all the travelers, the security lines are horrendous. I’m constantly washing my hands, wearing gloves when I’m outdoors, and carrying extra tissues.”

If you choose to take a long trip by car, giving yourself enough time to stop and stretch can be a big help. “I took a seven-hour trip by car and had to stop about every couple of hours just to get out and walk,” another member wrote. “I have had many fractures, including a hip replacement and peripheral neuropathy. We would stop at rest stops, gas stations, restaurants, lookout points, and anywhere you can walk. I am sure that I looked funny walking circles around gas stations and restaurants, but I didn’t care. Just be safe when you walk.”

Talk With Others Who Understand

MyMyelomaTeam is the social network for people with myeloma and their loved ones. More than 12,000 members come together to ask questions, give advice, and share their stories with others who understand life with myeloma.

Is life with multiple myeloma putting a strain on your relationships? What advice do you have for others? Share your experience in the comments below, or start a conversation by posting on MyMyelomaTeam.

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