When you have a blood cancer like myelofibrosis (MF), sometimes your life can seem out of control. Your mind may be filled with questions about treatments, your prognosis, and how to feel as good as you can every day.
You have the power to take back the wheel. Taking care of your mind, body, and spirit can help you get back on the road to feeling better.
Fill Your Belly With Goodness
Choosing the right foods can help with some of the complications of the disease. It’s also an important part of self-care when you have myelofibrosis.
MF is a form of leukemia that creates scar tissue in your bone marrow, where your blood cells are made. So, people with MF often have unhealthy cells and blood counts that are out of whack. Anemia – too few red blood cells – is often a problem that can lead to symptoms like low energy and serious fatigue.
There isn’t a specific eating plan for people with MF. Talk to a registered dietitian who specializes in the dietary needs of people with cancer to help craft a plan just for you.
Foods rich in these nutrients can support healthy blood:
- Vitamins A, C, D, E, and B-12
- Folate
- Iron
- Copper
Long-term inflammation can affect scarring and blood counts, too. It can also lead to other complications, including an enlarged spleen.
A Mediterranean-style diet rich in antioxidants may help control inflammation. It can benefit your overall health, too.
Build your diet around foods like these:
- Fruits like berries
- Green leafy vegetables like spinach
- Legumes like chickpeas and black-eyed peas
- Fatty fish like salmon or mackerel
- Garlic
- Herbs and spices, including turmeric and curcumin
- Nuts
- Whole grains
- Dark chocolate
- Fats like olive oil
- Green tea
Sometimes, feeling full too soon is a problem for people with MF. You may get partly through a meal and feel too stuffed to keep going. An enlarged spleen or liver issues from your myelofibrosis may be the reason.
Try eating several small meals throughout the day instead of three large ones.
Talk to your doctor if weight is a problem. Cancer or its treatments can cause loss or gain.
Sleep Soundly
It’s easier to face a new day if you had a good night’s sleep. Cancer and its treatments can mess with your rest and add to fatigue during the day.
The first thing to do is clean up habits called your sleep hygiene:
Be consistent. Try to go to bed and wake up at the same times.
Set the mood. Create a relaxing bedtime routine. Try a warm bath or read a book. Brew some relaxing caffeine-free tea.
Turn down the heat. Keep your bedroom at a comfortable, cool temperature.
Power down screens. Turn off the television, phone, computers, and tablets about a half-hour before lights out.
Talk to your health care team if sleep problems continue. They may be able to prescribe medication. A special kind of talk therapy called cognitive behavioral therapy specifically for insomnia (CBT-I) may help, too.
Get a Move On
Check with your doctor about which types of exercise you should do and how hard you should push yourself.
If you get the go-ahead, regular exercise can help with:
- Fatigue
- Depression
- Sleep
- Your appetite
Work your way up to a total of about 150 to 300 minutes of moderate exercise a week. Break it up into 10-minute chunks several times a day if that works better for you. Here are some ideas to work movement into you day:
- Go for a brisk walk.
- Crank up some dance tunes and move.
- Go for a swim.
Maybe you’re more motivated when you’re exercising with others. Consider joining an exercise group for people with cancer or who are cancer survivors.
Dial Down Stress
Living with a long-term condition like myelofibrosis is stressful. Shuttling off to medical appointments, waiting on test results, and more can be overwhelming.
But chronic stress can make you feel worse. So it’s important to find a way to manage it. Try these ideas:
Meditate. This can chase away negative feelings and help you relax. Quiet your mind with focused breathing or a repetition of words.
Do yoga. This ancient practice uses controlled breathing, gentle stretches, and poses to balance the mind and body.
Try guided imagery. This focuses on positive images in your mind to heal the body.
Get a massage. A good rubdown can relieve muscle tension to help you relax.
Carve out ‘Me Time’
Put yourself at the top of your “to-do” list. Now’s the time to do what you enjoy.
- Take a relaxing bath.
- Play some music.
- Binge-watch a favorite show.
- Go for a walk.
- Phone a friend you haven’t talked to in a while.
- Work in the garden.
If you’ve ever said, “Someday I’d like to try …” now is the time to do it. Maybe it’s learning how to play the piano, taking art lessons, or leaf-peeping in New England in the fall. Make a plan to make it happen.
Find Myelofibrosis Support
When you have a rare disease like MF, you can feel like you're alone on a desert island. You’re not. Joining a support group may help you connect with others with myelofibrosis. Many support groups are back to meeting face-to-face post-COVID. Ask your health care team if any meet in your area.
Check social media sites like Facebook for groups where patients and caregivers can share stories and information.
- The MPN Research Foundation provides a list of online forums.
- Check out CancerCare's website for links to support groups led by oncology social workers.
- Contact the Leukemia and Lymphoma Society at 800-955-4572 (Monday-Friday, 9 a.m.-9 p.m. ET) to learn more about blood cancers and their treatments, support groups, and more.
It’s common for people faced with a diagnosis of cancer to struggle with emotions. Talk to your health care team about whether mental health counseling might help you.
Accept Help
Friends and loved ones often want to help. If they offer a helping hand, take them up on it. Tell them specifically what you really need. Some ideas include:
Help with errands. Ask someone to pick up some groceries, your dry cleaning, or your prescriptions.
Prepare meals. Let a friend or friends help you with dinners. Tell them what you and your family would enjoy.
Give you a lift. Ask loved ones to drive you to doctor appointments, treatments, or to the hair salon.
Help around the house. Ask someone to mow the grass, vacuum the carpet, or give the dog a bath.
Get Comfort
Comfort care is also called palliative care and treats the whole person. It gives relief from discomfort or pain related to your condition or its treatments. It supports you and your loved ones emotionally and spiritually, as well.
But it’s important to know that palliative care is not the same as hospice care. That’s specifically for people near the end of life when therapies to treat the disease stop.
You can get palliative care with other treatments at any time when you face a serious disease.
Talk to your medical team if you believe it could help you live better.
Show Sources
Photo Credit: E+ / Getty Images
SOURCES:
American Cancer Society “Physical Activity and the Person with Cancer.”
Cleveland Clinic: “Myelofibrosis.”
CancerCare: “Support Groups,” “Coping With Myelofibrosis,” “Palliative Care: What You Need to Know.”
MPN Research Foundation: “Nutrition Recommendations for MPN Patients,” “Online Patient Support Groups.”
National Cancer Institute: “Emotions and Cancer,” “Complementary and Alternative Medicine.”
National Sleep Foundation: “Sleep Hygiene,” “Cancer and Sleep.”
