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About myMPNteam

Living With MPNs

Posted on January 10, 2022
Medically reviewed by
Todd Gersten, M.D.
Article written by
Anastasia Climan, RDN, CDN

Myeloproliferative neoplasms (MPNs) are a group of blood cancers that typically occur in people who are 60 years or older. The three main types of MPNs are primary myelofibrosis, essential thrombocythemia, and polycythemia vera.

There are a variety of treatment options for MPNs, each with its own side effects and lifestyle implications. Many people with MPNs need to be diligent about avoiding germs and slowing the progression of the disease through ongoing monitoring and treatment. That said, people with MPNs can live long and fulfilling lives after diagnosis, especially as medical advances improve the ability to screen for and treat the disease early.

Here’s how MPNs may affect you at work and home, plus strategies you can use to maintain a high quality of life.

Focus on a Healthy Lifestyle

Living a healthy lifestyle can help you feel your best when living with an MPN. Proper nutrition, physical activity, stress management, and avoidance of tobacco products can reduce your risk of other diseases that may complicate your condition and limit your treatment options.

Diet

A cancer diagnosis often prompts people to think more about nutrition. While there’s no specific diet for people with MPNs, eating well can provide you with the energy and strength you need to manage symptoms and explore treatment options. Some of the most important nutritional considerations for MPNs include staying hydrated, following food safety protocols, and getting plenty of vitamins and minerals through whole foods.

To learn more about living better with MPNs, myMPNteam spoke with Dr. Ruben Mesa, an MPN specialist and director of Mays Cancer Center at UT Health San Antonio. “Diet definitely helps,” Dr. Mesa said, but it’s important to focus on how much and what you eat when you have an MPN.

Dr. Mesa noted, “Being on any structured diet means that you’re paying attention, and you’re probably eating less.” In particular, Dr. Mesa suggested the Mediterranean diet. “It’s a balance between fruits and vegetables and meat and fish and carbohydrates. … In the U.S., we just eat way too many carbohydrates. Carbohydrates are fine, but we just eat too many of them.”

Members of myMPNteam often discuss their food struggles. Taste changes or gastrointestinal problems from chemotherapy or other MPN treatments become barriers to maintaining a healthy diet and body weight. Consider meeting with an oncology dietitian if you’d like more support and ideas about what to eat.

Exercise

Doctors encourage regular exercise to combat fatigue for people with MPNs. However, putting the recommendation into practice isn’t always easy. Many myMPNteam members have reported feeling too tired to manage their daily activities, let alone exercise.

As one member stated, “Fatigue is a real problem with primary myelofibrosis! I agree that some days, all I can do is bathe and light housework. Some days I can function almost normally, whereas other days, I can hardly function at all.”

Rest is important. Sometimes, pushing yourself too hard to exercise isn’t worth it. If you’re struggling to be more active, let your health care provider know. It’s possible that your medication needs to be adjusted, or you could benefit from iron or B12 supplements. A little lab work and brainstorming could help make exercise feasible once again.

Stress Management

MPNs can take a toll on your mental health and increase your stress levels. “For many individuals, the uncertainty of having a disease that is not common is a stressor,” Dr. Mesa said.

Finding proactive stress management techniques is often crucial for living well with an MPN. As Dr. Mesa said, stress management allows us to “put that part of our lives that we can’t fix into a box and try to better control it.”

Many members of myMPNteam have developed unique strategies to keep stress levels down. One member shared, “I play golf and keep active every day.” Another said, “I have farm animals that I tend daily. Farm life keeps me very busy.”

Other positive ways to reduce stress include:

  • Listening to music
  • Spending time outdoors
  • Reading
  • Journaling
  • Cooking
  • Meditating
  • Connecting with a support group

If you’re having trouble managing stress on your own, consider finding a therapist who can help. Dr. Mesa encourages people with MPNs to connect with others who can relate to their experience of having a rare disease through online communities and support groups.

Avoiding Smoking

Smoking significantly raises the risk of MPNs, with some studies showing a 2.5-fold higher risk for daily smokers and 1.9-fold higher risk for ex-smokers or occasional smokers.

Even if you’ve been smoking for a long time, it’s never too late to quit. See the Centers for Disease Control and Prevention’s website for resources on quitting smoking. Talk to your health care professional for additional support in this crucial step toward better health.

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

Communicating with others about your health is important when you have an MPN because others may not realize the struggles you’re facing. Here’s how to educate the people around you to avoid misunderstandings and enable them to offer compassion and support.

Talking to Family and Friends

Letting your friends and family know about an MPN diagnosis can feel intimidating, especially because it can be hard to predict how others will react. Consider writing down what you’d like to share in a card or letter. Because many people aren’t familiar with rare diseases like MPNs, you may want to provide some information about what your diagnosis means and how it impacts your daily life. Sharing your disease burden with loved ones rather than keeping it a secret will give them a chance to show support and connect with you during difficult times.

Talking to Co-Workers

You get to decide whether to keep your MPN diagnosis private at work. However, choosing not to disclose your MPN diagnosis could leave you feeling alone and unsupported. If you’re uncomfortable sharing too many details about your health, you can always let others know that you’re going through some health challenges and appreciate their patience and understanding.

Family Life With MPNs

MPNs can place added stress on the entire family. Family dynamics may change if someone takes on the role of a caregiver or if the person undergoing treatment needs to take a step back from responsibilities at home. In many cases, a life-changing diagnosis like an MPN brings family members closer together by shifting the focus on what’s important in life.

If your diagnosis is interfering with how you’re able to meet your family obligations, be sure to keep lines of communication open to allow for adjustments and understanding.

Parenting With MPNs

While it’s generally encouraged to make children aware of a cancer diagnosis in the family, you’ll need to tailor the information you provide based on the child’s age and ability to understand and cope with the news. Preparing your child for changes that may come from treatment and setting them up with external support systems, such as family counseling or individual therapy, will allow them to process what’s happening and learn to express themselves in healthy ways.

Working With MPNs

If you choose to continue working, it’s crucial to set clear boundaries — and stick to them. One member of myMPNteam described running into trouble after reducing their work hours to part-time work: “My boss keeps pressuring me to come back full-time. I don’t want to quit the job, but no one realizes I am not able to be there every day. I feel that because I look well, no one realizes how miserable I am.”

Reviewing the laws about reasonable accommodations in the workplace can help you understand your employment rights. Discuss your condition with a human resources administrator if you need any accommodations or modifications, such as a flexible schedule, work from home arrangements, or the ability to take time off for treatments. You can also ask your doctor for an explanation of how accommodations might help you and share it with your human resources manager.

If you find that your current job is no longer a good fit, it may be time to consider finding something new or taking early retirement. Putting your health above all else is crucial when you have an MPN, even if that means putting work on the back burner.

Disability Benefits for MPNs

Disability benefits aren’t a guarantee for people with MPNs, but if you’re unable to work because of your condition, it’s a good idea to apply. Federal programs like Social Security Disability Insurance and Supplemental Security Income can offer financial support if you’re unemployed. These funds may also be supplemented with state funds, depending on where you live. Ask your health care provider to connect you with a social worker who can help you with the paperwork to apply.

Paying for Treatment and Medication

Cancer treatment can be expensive. Costs for your treatment will be much more affordable if you have some form of public or private health insurance. Options include:

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:

You may want to talk with a Medicare advisor or social worker about programs that can help offset the costs of treatment. You can also consider participating in a clinical trial to receive new treatments and assist with MPN research. Talk with your oncologist to determine if a particular clinical trial is a good choice for you.

Traveling With MPNs

MPNs may make traveling a little more complicated, but not impossible.

Before planning a trip, talk with your health care professional about the best ways to protect yourself on the road. Getting up to date on all your vaccinations before you go and checking in with your insurance company about coverage in different locations can help give you peace of mind.

Bring any medications you could need, and have an emergency plan in place in case you need medical attention away from home. When flying on an airplane, pack your medications in a carry-on bag (in their original containers) in case your checked luggage gets lost.

Because MPNs can increase your risk of blood clots, be sure to move around or split up a long trip so you aren’t stuck sitting for an extended time.

Talk With Others Who Understand

On myMPNteam, the social network for people with MPNs, you can connect with other people living, working, and thriving with MPNs. Members come together to ask questions, give advice, and share their stories with others who understand life with MPNs.

How has getting diagnosed with an MPN impacted different aspects of your life? Share your story in the comments below, or start a conversation by posting on myMPNteam.

All updates must be accompanied by text or a picture.
Todd Gersten, M.D. is a hematologist-oncologist at the Florida Cancer Specialists & Research Institute in Wellington, Florida. Review provided by VeriMed Healthcare Network. Learn more about him here.
Anastasia Climan, RDN, CDN is a dietitian with over 10 years of experience in public health and medical writing. Learn more about her here.

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