Caring for Yourself With Mantle Cell Lymphoma

Medically Reviewed by Melinda Ratini, MS, DO on February 29, 2024
Written by Evan Starkman
7 min read

If you have mantle cell lymphoma, you know the physical and emotional toll it can take. The disease lowers your energy and taxes your body’s natural defenses -- your immune system. The treatments come with side effects. And the stress of having cancer might feel overwhelming at times.

But there are ways to take charge of these challenges. Lifestyle changes, emotional support, and long-term planning can help.

Here are some ways to boost your health and live your best life.

Medicine and other therapy typically don’t cure mantle cell lymphoma, so you might need treatment on and off for years. That means you’ll have doctors’ appointments to manage and lots of instructions to follow.

Your cancer doctor (oncologist) can help you stay on top of your medical care with a document called a survivorship care plan. Ask them to make this plan for you during or right after your treatment. It might include detailed info like:

  • A summary of your treatment
  • Recommendations for follow-up care
  • Schedules for physical exams and medical tests to see if your cancer has come back or spread
  • Exams that check for treatment side effects that can show up months or years later
  • Information that can help you meet your emotional, social, legal, and financial needs
  • Recommendations for diet and exercise
  • Referrals to specialists

For more support and answers to your questions about survivorship, you can call the Lymphoma Research Foundation’s free hotline at (800) 500-9976.

The wide range of treatments for mantle cell lymphoma includes chemotherapy, targeted drugs, and stem cell transplants. Each of these can bring on side effects.

Chemotherapy, for example, can cause problems like:

  • Extreme tiredness (fatigue)
  • Easy bleeding or bruising
  • Infections
  • Hair loss
  • Nausea and vomiting
  • Nerve problems that cause numbness, tingling, and pain

It’s important to tell your doctor whenever you have unusual symptoms, even if you’re not sure they’re medication side effects. The doctor can recommend ways to relieve these problems or prevent them from happening in the future.

Certain side effects, like fatigue, can last for months or years. Other so-called “late” side effects can show up years after your treatment has ended. Depending on the treatment you got, side effects can include thyroid problems, trouble with memory, depression, and heart problems. Ask your doctor if you could be at risk for these problems. Your survivorship care plan might include information on them, too.

A nutritious eating plan can help you:

  • Keep up your energy and strength.
  • Stay at a healthy weight.
  • Cope with treatment side effects.
  • Lower your chances of getting an infection.
  • Heal and recover faster.

Each person’s exact nutritional needs are unique. But, in general, it’s a good idea to eat a balanced diet that avoids processed food and focuses on fruits and vegetables, lean protein, and whole grains.

You might ask your doctor, a nutritionist, or a dietitian to come up with an eating plan just for you. They can recommend ways for you to deal with challenges like a low appetite or changes in the way food tastes. You can get a free one-on-one consultation with a registered dietitian through the Leukemia & Lymphoma Society.

It’s always best to get essential nutrients from food, not supplements. Talk to your doctor before you try any supplements. There’s a chance that certain vitamins, minerals, and herbs -- even ones labeled “natural” -- could affect your cancer treatment or bring on side effects.

Physical activity is a great way to ease stress and boost your energy and immune system.

If you’re not active already, ask your care team to help you create an exercise routine that’s safe for you. They’ll consider things like your age and any other health problems you have when coming up with a plan.

If you’ve been working out for a while, it’s still important to talk with your doctor. Chances are you’re not going to be able to work out as long or intensely as you used to. And that’s OK. It’s more important to exercise consistently and respect your new limits.

You can also ask your doctor if mind-body workouts like tai chi and yoga might be right for you. Tai chi combines flowing, balance-building movements with breathwork and meditation. For some people with cancer, it helps ease pain, fatigue, and sleep problems. In yoga, you hold poses that boost flexibility while also paying attention to your breath. It may improve anxiety, depression, and stress.

All the challenges and responsibilities that come with managing mantle cell lymphoma might make your mind race from time to time. Find ways to relax and take charge of your stress. You could:

  • Spend a few minutes each day in a quiet, peaceful place.
  • Do things you enjoy, such as read a book, play with your pet, or listen to music.
  • Write down what you’re feeling in a journal to help process your emotions.
  • Confide in friends and family, in person, over the phone, or by video chat.
  • Let your loved ones know exactly how they can help you. Maybe it’s a phone call a week for emotional support. Or maybe you’d like them to run errands for you or do other chores when you’re low on time and energy.

Sometimes it helps to meet other people with lymphoma who understand what you’re going through. You can share your experiences, ask questions, and encourage one another.

The Leukemia & Lymphoma Society has several ways to help you connect. You could join a support group, talk to a peer volunteer, or participate in an online support chat. You can also get one-on-one peer support through the Lymphoma Research Foundation.

Life with lymphoma might make you feel sad, scared, or isolated at times. If heavy emotions like these last for 2 weeks or more, it’s time to talk to your doctor. Depression and anxiety are common among people with cancer. The sooner you get a diagnosis, the sooner you can get the relief you deserve.

Ask your doctor to refer you to a mental health professional, like a psychiatrist or a counselor. Treatments like talk therapy and medication might help.

 

If you’re not sleeping well at night, it can affect everything from your mental health to your immune system and your ability to exercise and eat right.

Sometimes lymphoma medications can hurt your sleep. So, talk to your cancer doctor if you’re having trouble nodding off or staying asleep. Some people get much better shut-eye once their doctor changes the time of day they take certain meds.

A relaxing, consistent bedtime routine can also help you catch more ZZZs. Some ways to wind down are:

  • Practice breathing exercises or other relaxation techniques.
  • Skip caffeine several hours before bed.
  • Power down your TV, tablet, or phone, since they can keep you awake.

Some complementary therapies might ease your stress, symptoms, or side effects. You may be able to try one or more of them with your regular treatment plan. Understand that they don’t work for everyone, though.

Most importantly, check with your cancer doctor before you try any type of complementary therapy, so they can make sure it’s safe for you. For example, there may be times during your treatment when it’s too risky for you to get acupuncture or massage therapy, because your platelets or white cell blood count are low. So, your care team may tell you to wait.

If your doctor says it’s OK to try a certain type of complementary therapy, tell the person who gives you the therapy (called the practitioner) whether you’re currently getting or recovering from treatment for mantle cell lymphoma. 

A few types of complementary therapies are:

Acupressure. A practitioner rubs or puts pressure on specific parts of your body. It may help control your symptoms.

Acupuncture. A practitioner inserts very thin needles into your body, which may relieve mild pain and certain types of nausea. Again, be aware that you may need to avoid this during your cancer treatment.

Aromatherapy. You take in the aroma of essential oils through a diffuser or when a practitioner massages them into your body. This may ease stress and nausea.

Massage therapy. When a therapist rubs, kneads, and manipulates your muscles and other soft tissues, it may ease stress, anxiety, depression, and pain. It might also make you feel more alert.

Meditation. Studies suggest that when you take time to quietly focus on the present (by paying attention to your breath, for example), it may ease stress from anxiety, depression, and pain.

If you smoke, quit. You can ask your doctor to help you kick the habit.

And if you drink alcohol, ask your doctor how much is OK for you.