Supportive care for Hodgkin lymphoma

Supportive care helps people meet the physical, practical, emotional and spiritual challenges of Hodgkin lymphoma (HL). It is an important part of cancer care. There are many programs and services available to help meet the needs and improve the quality of life of people with cancer and their loved ones, especially after treatment has ended.

Recovering from HL and adjusting to life after treatment is different for each person, depending on many different factors, such as where the cancer was in your body, the stage of the cancer, the type of treatment and many other factors. The end of cancer treatment may bring mixed emotions. Even though treatment has ended, there may be other issues to deal with, such as coping with long-term side effects.

If you have been treated for HL, you may have the following concerns.

You can develop infections if you have a low white blood cell count (called neutropenia). White blood cell counts can be low when HL or its treatments affect the bone marrow. Your healthcare team may give you medicines to prevent infection if you have a low white blood cell count. They will also give you medicines to treat infections, such as antibiotics, antivirals and antifungals.

After treatment, your immune system may not work as well as it once did. Treatments for HL, such as chemotherapy, chemoimmunotherapy and radiation therapy, can affect the immune system.

It's important to try to prevent infections after treatment for HL. Having good hygiene, protecting your skin and maintaining good general health are some ways to help prevent infection. It is also important to keep your immunizations up to date to help prevent some infections.

Find out more about infection, low white blood cell counts and immunizations.

Fatigue is a symptom of having a low red blood cell count (called anemia). Red blood cell counts can be low when the bone marrow is affected by HL or its treatments. Fatigue can also be a symptom of other problems that people with HL may have, including poor nutrition, sleep problems, anxiety or depression.

Once the cause of fatigue is known, your healthcare team can suggest ways to treat it. Treatments may include:

• iron pills or iron infusions if your iron is low
• blood transfusion for anemia
• nutrition supplements
• sleep medicines
• antidepressants

Find out more about fatigue and low red blood cell counts.

Certain combinations of chemotherapy drugs and radiation therapy to the pelvis and surrounding areas can affect your fertility (the ability to get or stay pregnant or get someone else pregnant).

Some treatments for HL can affect your ovaries or your testicles, which can cause temporary or permanent infertility.

If you want to have children in the future, talk to your healthcare team before you start cancer treatment. They can refer you to a fertility clinic and plan your treatment in ways that support your chances of being able to have children.

Find out more about fertility problems and treatment-induced menopause.

During treatment, your healthcare team will follow you closely to watch for any heart problems. Heart problems caused by treatment for HL may not show up for a long time after treatment has finished. So you may have regular heart function tests to find any problems that may develop over time.

Chemotherapy drugs used to treat HL can cause heart damage. The drug most likely to cause heart problems is doxorubicin. But vinblastine, vincristine and bleomycin can also affect the heart. The dose of a certain drug that you get over your lifetime can affect your heart. The risk of heart problems after chemotherapy for HL increases if you:

• had higher doses of a chemotherapy drug that can cause heart damage
• had chemotherapy with drugs that can cause heart damage as well as radiation therapy to the chest
• were younger than 40 when you were treated for HL
• already had heart problems

Radiation therapy to the chest increases the risk of developing heart problems after treatment for HL is finished. In the past, radiation therapy was given to the whole chest (called mantle radiation). This meant that a lot of the heart muscle was exposed to radiation. Newer radiation therapy techniques give lower doses of radiation to a smaller area. This means that there is a lower chance that radiation will damage the heart.

The following types of heart problems may develop after treatment for HL:

• pericarditis – an inflammation of the sac around your heart (pericardium)
• pericardial effusion – a collection of extra fluid in the sac around the heart
• congestive heart failure
• cardiomyopathy – a disease of the heart muscle that makes it stiff, thick or enlarged
• coronary heart disease

Find out more about heart problems.

During treatment, your healthcare team will follow you closely to watch for any lung problems. After treatment is finished, you may have regular lung function tests to find any problems that may develop over time.

The chemotherapy drug used to treat HL that can cause lung problems is bleomycin. Your healthcare team may need to lower the dose of or stop giving you this drug. The risk of developing lung problems after receiving bleomycin is higher if you:

• were younger than 40 when you were treated for HL
• had lung problems such as asthma before starting treatment for HL
• use tobacco or are exposed to second-hand smoke
• had both radiation therapy to the chest and bleomycin

People who have radiation therapy to the chest for HL are at a higher risk for developing lung problems after treatment is finished. Radiation therapy used to be given to the whole chest (called mantle radiation), so more of the lung tissues were exposed to the radiation. Newer radiation therapy techniques give lower doses of radiation to a smaller area. This means that there is a lower chance that radiation will damage the lungs.

The following lung problems may develop after treatment for HL:

• pulmonary fibrosis – hardening and scarring of the lung tissues
• pneumonitis – inflammation of the lung tissues

Find out more about lung problems.

Radiation to the head or neck area can increase the risk for developing dental cavities after treatment. This is because radiation can affect the salivary glands so they don’t make enough saliva. Whether there is enough saliva depends on the dose of radiation and the number of salivary glands in the treatment area. Less saliva in the mouth can lead to cavities and gum disease. These problems can cause tooth pain, tooth decay and swollen, painful gums.

You can help prevent dental problems by:

• getting a complete dental checkup and cleaning
• having any cavities filled before treatment begins
• using good daily oral hygiene and getting fluoride treatments during and after treatment
• getting regular checkups and cleanings and treating any problems that develop after treatment for HL is finished

Find out more about dental problems.

The thyroid is a small gland in the front of the neck. It makes and releases hormones that are involved in growth and metabolism.

Radiation to lymph nodes in the neck can affect the thyroid.

People who have radiation therapy to the neck have a higher risk of developing hypothyroidism later in life. Hypothyroidism is when the thyroid doesn’t make enough thyroid hormone to keep the body working properly. It usually develops 3 to 4 years after radiation therapy, but it can develop even later.

Your healthcare team will regularly check how well your thyroid is working. Some people need to take thyroid hormone replacement to regulate the thyroid.

Find out more about thyroid problems.

Chemotherapy and radiation therapy for HL can increase the risk for a second cancer. A second cancer is a new cancer that isn't related to the first type of cancer that was treated. It’s a completely different cancer.

The possibility of developing a second cancer is frightening, but the benefit of treating HL with chemotherapy or radiation therapy usually far outweighs the risk of developing another cancer. And improvements in the treatments for HL mean that both chemotherapy and radiation therapy can be given at lower doses, which reduces the risk for a second cancer.

Whether another cancer develops depends on:

• the type of chemotherapy drugs used
• the dose of chemotherapy
• the dose of radiation therapy
• the length of treatment
• if both chemotherapy and radiation therapy were given

Routine follow-up to find a second cancer early, as well as being aware of changes in your health and reporting problems to your doctor, are important parts of follow-up care after cancer treatment.

The following are the most common types of second cancer that can develop after treatment for HL:

• Breast cancer can develop in people who had radiation therapy to the chest.
• Lung cancer can develop in people who had radiation therapy to the chest, especially if they smoke.
• Acute myeloid leukemia (AML) or myelodysplastic syndromes can develop in people who had chemotherapy or a stem cell transplant.

Find out more about second cancers.

During treatment, the focus is getting through treatment and it may be hard to stay positive. Finances, work and relationships may be a concern and can cause anxiety. When treatment is finished, you may have other thoughts and unexpected feelings, including:

• concern that the HL will come back
• worry about the effects HL will have on your family, friends and career
• questions about your self-worth and identity
• worries about changes in your appearance
• concern about adapting to lifestyle changes
• anxiety because you have less contact with the healthcare team

Talk to your healthcare team about your concerns. They can support you and help you cope with HL in different ways, including helping you:

• do appropriate physical activities
• maintain good nutrition
• find a good balance between being active and getting enough rest
• communicate openly and honestly about your fears and concerns
• find the right support and treatment for emotional distress, such as counselling or medicines

Learn more about your emotions and cancer and life after treatment.

To make decisions that are right for you, ask your healthcare team questions about supportive care.