ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of mastocytosis and its treatment. This page includes several links outside of this guide to other sections of this website. Use the menu to see other pages.
Every disease treatment can cause side effects or changes to your body and how you feel. For many reasons, people don’t experience the same side effects even when they are given the same treatment. This can make it hard to predict how you will feel during treatment.
As you prepare to start treatment, it is normal to fear treatment-related side effects. It may help to know that your health care team will work to prevent and relieve side effects. Doctors call this part of treatment “palliative care.” It is an important part of your treatment plan, regardless of your age or disease state.
Coping with physical side effects
Common physical side effects from each treatment option for mastocytosis are described in the Treatment Options section. Learn more about side effects of mastocytosis and its treatment, along with ways to prevent or control them. Changes to your physical health depend on several factors, including the length and dose of treatment and your general health.
Sometimes, physical side effects can last after treatment ends. Doctors call these long-term side effects. They call side effects that occur months or years after treatment late effects. Treating long-term side effects and late effects is an important part of survivorship care. Learn more by reading the Follow-up Care section of this guide or talking with your doctor.
Coping with emotional and social effects
You can have emotional and social effects as well as physical effects after a mastocytosis diagnosis. This may include dealing with difficult emotions, such as sadness, anxiety, anger, or managing your stress level. Sometimes, patients have problems expressing how they feel to their loved ones, or people don’t know what to say in response.
Patients and their families are encouraged to share their feelings with a member of their health care team. You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your needs.
Coping with financial effects
Treatment can be expensive. It is often a big source of stress and anxiety for people with mastocytosis and their families. In addition to treatment costs, many people find they have extra, unplanned expenses related to their care. For some people, the high cost stops them from following or completing their treatment plan. This can put their health at risk and may lead to higher costs in the future. Patients and their families are encouraged to talk about financial concerns with a member of their health care team. Learn more about managing financial considerations, in a separate part of this website.
Caring for a loved one with mastocytosis
Family members and friends often play an important role in taking care of a person with mastocytosis or mastocytosis-related cancer. This is called being a caregiver. Caregivers can provide physical, practical, and emotional support to the patient, even if they live far away.
Caregivers may have a range of responsibilities on a daily or as-needed basis. Below are some of the responsibilities caregivers take care of:
Providing support and encouragement
Helping manage symptoms and side effects
Coordinating medical appointments
Providing a ride to appointments
Assisting with meals
Helping with household chores
Handling insurance and billing issues
Learn more about caregiving.
Talking with your health care team about side effects
Before starting treatment, talk with your health care team about possible side effects. Ask:
Which side effects are most likely?
When are they are likely to happen?
What can we do to prevent or relieve them?
Be sure to tell your health care team about any side effects that happen during treatment and afterward, too. Tell them even if you don’t think the side effects are serious. This discussion should include physical, emotional, and social effects of mastocytosis.
Also, ask how much care you may need at home and with daily tasks during and after treatment. This can help you make a caregiving plan.
The next section in this guide is Follow-up Care. It explains the importance of checkups after you finish medical treatment. You may use the menu to choose a different section to read in this guide.