When you’re caring for someone with mantle cell lymphoma, there are many things to consider. If you’re helping another person, whether it’s a loved one or a patient, it can be difficult to approach any cancer diagnosis.
It may be especially hard with a rare disease such as mantle cell lymphoma, in which information may be harder to come by and understanding of the condition may not be concrete. As a caregiver of someone with MCL, you’ll want to gain a good understanding of the condition, know how to assess the kind of help the person you’re caring for needs most, and get tips for keeping yourself healthy and available.
This article offers tips on how to help someone with MCL.
There are about 70 types of non-Hodgkin lymphoma (NHL), and MCL is one of them. MCL is rare, representing only 6% of new NHL diagnoses in the United States.
The main cause of MCL is believed to be genetic, with roughly 85% of people diagnosed showing a genetic predisposition.
MCL can affect many parts of the body, including bone marrow, your blood, the gastrointestinal tract, the liver, the spleen, or the tonsils.
In rare cases, MCL can also affect the brain, spinal cord, and lungs. While you’re attending appointments with the friend or family member you’re caring for, make sure you both understand what parts of the body are affected and how.
Some of the most common symptoms of mantle cell lymphoma are unexplained weight loss, loss of appetite, night sweats, fever, and gastrointestinal issues such as bloating, nausea, or vomiting.
Understanding what the person you’re caring for is experiencing enables you to help them take notes and discuss symptoms with their doctor. Try to capture details around when symptoms started, how long they’ve lasted, and their severity on a scale of 0–10. When treatment starts, help keep an ongoing log in a journal of how the patient responds and if any side effects show up and potential strategies according to the symptoms.
Doctors often order blood and imaging tests to confirm an MCL diagnosis and assess how it has progressed. Blood tests look for:
- low white blood cell counts (neutropenia)
- low red blood cell counts (anemia)
- low platelets (thrombocytopenia)
Imaging tests such as CT and PET scans help identify where MCL is in the body and how far it has spread.
Doctor’s visits and treatment courses can become overwhelming for the person you care for. Look for ways to help them get organized and ease logistics. Drive them to each appointment and jot down questions for the doctor in advance if you can. During the appointment, ask the doctor to repeat information or slow down as needed. Your doctor wants to communicate clearly but may need your help to do so. It can be helpful to keep a binder with important paperwork, such as test results, instructions for medications, a list of contacts and phone numbers, and recommendations for specific situations.
Every person diagnosed with MCL manages it differently and has different needs for emotional or physical help. One person may need help with meals but have trouble asking for it. Another may have a full meal train in effect but housekeeping isn’t covered. Many people need help with medication management.
Give the person you’re caring for a lot of space to express themselves. Ask open-ended questions to pull out more than just “yes/no” answers. Repeat back a summary of what you’re hearing as you go to confirm your understanding.
Being a caregiver is rewarding. It’s also a huge responsibility. Sometimes, it’s tough, demanding, or draining. Don’t forget your own mental, emotional, and physical health while you’re helping with another’s. It can help to plan breaks, join a caregiver support group, keep a journal of your feelings, or practice relaxation techniques like deep breathing. Asking and accepting help with daily tasks, such as driving to appointments and preparing meals can help you feel supported. A holistic care plan for MCL tends to include information for caregivers. Ask the doctor about resources.
