Coping With Hodgkin Lymphoma

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From diagnoses to post-treatment (survivorship), coping with Hodgkin lymphoma (HL) is likely to require calling upon a trifecta of tools—emotional support for dealing with the shock of diagnosis and the rigors of treatment; strategies for relieving physical symptoms and side effects; and reliance on other people to provide support.

Emotional

Coping with cancer is like an endurance challenge with occasional sprints. When you're first diagnosed, the best first step (most of the time) is to take a moment to catch your breath. From there:

Learn as much as you can about your disease. This can be empowering during a time when you're likely to feel anxious and as if you've lost control of your life. Practically speaking, self-knowledge will allow you to be an active member of your cancer care team and an advocate for your care. Look for solid information online and ask your doctor a lot of questions.

Bring a friend or trusted family member to medical appointments, not only to provide emotional support but also to ask questions you may find difficult and to take careful notes.

Allow yourself to feel your feelings. They're likely to ping-pong all over the place and that that is normal.

Find someone you can be "real" with. This could be a family member or, better yet, a compassionate and level-headed friend you can share your thoughts with. However, given depression and anxiety are common for people with cancer, a therapist might be best of all. Your doctor may be able to refer you to a counselor who specializes in oncology and has a working knowledge of the challenges you're facing. Many cancer treatment centers have mental health professionals on staff as well.

Physical

Hodgkin lymphoma causes few symptoms, but all types of cancer tend to render people excessively tired, yet often unable to sleep well. HL also tends to cause itchy skin. Treatment for HL—namely, chemotherapy and, if it's required, radiation therapy—have common side effects that can be uncomfortable, inconvenient, and emotionally challenging.

Disease Side Effects

Often, discomfort and other symptoms experienced during cancer treatment can stem both from the illness and from the treatment. Keep your doctor up-to-date about what you're going through so that together you can home in on the source or sources of your symptoms.

Sleep Problems

Getting adequate rest is extremely important to healing, but many people with HL cope with cancer-related insomnia. Talk to your doctor about treatments for sleep problems you may be having. Fatigue can result from illness as well as from anemia brought on by suppression of bone marrow (a common side effect of chemotherapy).

Let your doctor know how tired you've been so that they can rule out treatable causes such as anemia, low blood oxygen levels, sleep apnea, or medications. For your part, getting enough sleep, eating regular, nutritious meals, getting moderate amounts of exercise, and reaching out for help from others are all ways to tackle extreme tiredness.

Itchy Skin

Roughly 30% of people with Hodgkin lymphoma develop a persistent and very annoying itch. Getting relief from the so-called "Hodgkin itch" can be challenging: Some people are helped by medications such as antidepressants and anti-histamines. Alternative therapies (massage, acupuncture, and medication) may also be useful.

Treatment Side Effects

Hodgkin lymphoma typically is treated with chemotherapy and, sometimes, follow-up radiation. You may be faced with the following:

Nausea and Vomiting

Once one of the most feared side effects of chemo, these unpleasant symptoms have become less severe and less common for many with cancer thanks to modern medicines formulated to be less distressing to the gastrointestinal system. Many people now have little or no chemotherapy-induced nausea.

For those that do, there are quite a few anti-nausea medications that your doctor can prescribe for you; some can be given in combination. Examples include:

  • Emend (aprepitant)
  • Decadron (dexamethasone)
  • Anzemet (dolasetron)
  • Kytril (granisetron)
  • Droperidol (haloperidol)
  • Ativan (lorazepam)
  • Reglan (metoclopramide)
  • Zofran (ondansetron)
  • Aloxi (palonosetron)
  • Compazine (prochlorperazine)
  • Phenergan (promethazine)

Increasingly, cannabinoids are being given to prevent and ease nausea and vomiting caused by chemotherapy as well, according to the National Cancer Institute (NCI), so it may be worth exploring the availability of legal medical marijuana in your state with your doctor. Meanwhile, you can take non-pharmaceutical steps to prevent GI distress during chemo.

10 Ways to Prevent Nausea and Vomiting During Chemo

  1. Eat small, frequent meals.
  2. Do not drink fluids during meals, but do drink lots of fluids in between.
  3. Don't eat foods that are greasy and high in fat before treatment sessions.
  4. After eating, stay sitting up for half an hour.
  5. Save your favorite foods for when you are done with chemotherapy.
  6. Avoid odors that make you feel queasy.
  7. Wear clothes that are loose around your abdomen.
  8. Don't smoke (even better, kick the habit altogether).
  9. Do not exercise right after eating.
  10. Make your environment and food as aesthetically pleasing as possible.

Weight Loss

Certain side effects of chemotherapy, such as taste changes (metal mouth) and mouth sores, can make it difficult to eat at a time when it's vital to take in plenty of calories and nutrients. A cancer nutritionist can offer guidance to help you overcome these problems, such as recipes for soft foods you can prepare at home and store-bought liquid nutritional supplements.

Hair Loss

This can be a distressing side effect of chemotherapy, and well-meaning "It will grow back fast" comments aren't likely to help. There are ways to cope, from having a wig made from your own hair before it falls out or purchasing one made from human hair to embracing the pretty headscarf or attractive hat approach.

You can talk to your doctor about options for trying to prevent hair loss from chemotherapy, but most yield mixed results at best. In fact, one, scalp cooling, is not advisable for people with blood-related cancers such as Hodgkin lymphoma.

Bruising

Also related to the effects of chemo on bone marrow is a condition called thrombocytopenia in which there are a decreased number of platelets in the blood. Symptoms include easy bruising or red spots on the skin, joint and muscle pain, external bleeding (from the nose, for example, or gums when you brush your teeth). In rare cases, internal bleeding can occur.

Aside from a few medical approaches to treating thrombocytopenia (your doctor's call), it may be helpful to eat plenty of foods rich in vitamin B12, folate, and iron—nutrients important to the production of healthy platelets. Note that it's best to boost nutrients with foods, as some supplements may interfere with the effectiveness of cancer treatments.

Lowered Immunity

Chemotherapy increases the risk of infection by lowering the white blood cell count, and so it's important to take whatever measures you can to keep from getting sick:

  • Steer clear of crowds.
  • Stay away from friends and family who are sick (they will understand that you need to keep your distance until they're well again).
  • Don't use other people's toothbrushes, eating utensils, drinkware, or makeup.
  • Eat only well-done meat and fish (take a sushi break), and even eggs (no runny yolks).
  • Inspect fruits and vegetables for signs of spoiling and wash produce thoroughly.
  • Don't eat honey (it can contain the bacterium that causes botulism).
  • Use separate cutting boards for raw protein and vegetables.
  • Skip the buffet and salad bar at restaurants.
  • Don't eat moldy cheeses, such as Stilton and blue, or even brie.
  • Be careful around pets: Have someone else scoop the litter box or pick up dog poop.
  • Use an electric shaver rather than a razor to lower the risk of a nick.
  • Take a bath or shower every day.
  • Use a soft toothbrush.
  • Use disposable gloves to protect yourself from exposure to potential pathogens, such as when wiping your toddler's runny nose.
  • Wash your hands often and well.

Radiation Dermatitis

Radiation is sometimes used after chemotherapy for Hodgkin lymphoma. Among the most common side effects is a constellation of skin symptoms similar to those of overexposure to the sun, such as redness, itchiness, and dryness known as radiation dermatitis.

Usually skin heals rapidly once treatment is complete, although affected areas may remain slightly discolored (like a suntan). Until then, there are simple ways to deal with the discomfort:

  • Bathe or shower in lukewarm water.
  • Don't use a heating pad on the area.
  • Don't use scented soaps, perfumes, lotions, deodorants, cosmetics, or creams on the treated area unless approved by your doctor.
  • Wear loose clothing around the treatment area to prevent irritation from fabric rubbing against your skin.
  • Stay out of the sun (and certainly, don't go to a tanning salon)— even after radiation therapy has ended.
  • Try not to scratch, no matter how itchy your skin is.

If you're really uncomfortable, tell your doctor, who may be able to prescribe an ointment or cream to reduce discomfort.

Do not apply any cream or other topical products to your skin two hours before or two hours after a radiation treatment (unless directed to do so by your doctor), as this may interfere with the amount of radiation that enters your body.

Radiation Pneumonitis

With radiation to the chest, inflammation of the lungs, radiation pneumonitis, is fairly common. Thankfully, this side effect is relatively easy to treat. Make sure you let your doctor know if you notice a cough or shortness of breath, as untreated radiation pneumonitis can lead to permanent pulmonary fibrosis without treatment. Radiation to the abdomen may cause nausea, and usually results in permanent infertility as well.

Impaired Fertility

Chemotherapy can damage or even destroy reproductive structures, which can affect fertility in both men and women as well as increase the risk of fetal anomalies if pregnancy is achieved.

As devastating as this prospect can be, with pre-treatment planning the reproductive side effects of chemo can be overcome. For men, the best option is to freeze healthy sperm (cryopreservation). Although a bit more complicated, women can freeze embryos. Freezing eggs is a less established technology, but may work in some cases.

A fertility specialist or perinatologist (a doctor who specializes in caring for women who have had cancer) can help you understand your options and alleviate your anxiety.

Social

Most people with cancer have family and friends who want to help, but receiving that help can be difficult. Some common reasons:

  • You usually like to do things for yourself.
  • You don’t want to be a burden.
  • Your family and friends are busy with their own lives.
  • You don’t want to feel indebted.
  • You don’t want to give up the control that comes with being able to handle everything yourself.

If any of these ring true for you, it may help to remember that you wouldn't hesitate to offer assistance or support to a friend or loved one who's coping with cancer. Keeping this in mind may ease any guilt you may be feeling by leaning on those who want to be there for you.

Support groups offer the opportunity to interact with a community of people facing the same challenges you are. Your oncologist or cancer treatment center may be able to connect you with a local group specifically for patients with Hodgkin lymphoma or one whose members are at the same stage of cancer as you are (newly-diagnosed, for example).

Online communities and other resources can provide support as well. For example, the Leukemia & Lymphoma Society (LLS) has a well-established online support group as well as a peer-to-peer program that matches new patients with trained volunteers who have been through the ordeal of having lymphoma.

Practical

From the day you're diagnosed until well after you've finished treatment but are still visiting your doctor regularly for follow-up exams, Hodgkin lymphoma will have a tangible impact on your finances, work, and daily life.

Finances

Even with the most comprehensive health insurance plan, having cancer can drain your resources. The first thing you should do after being diagnosed is review your policy (or have a trusted friend or loved one do it) to make sure you understand vital details such as what procedures and treatments will be covered, to what extent, and if you'll need prior authorization.

If even with insurance, you'll need help to pay for your care. If you do not have health insurance, at least some degree of financial support may be available to you from other sources. The cancer center where you're receiving care should be able to point you toward viable options.

You might also be able to obtain financial assistance through a blood-cancer charity and organization. For example, both the Lymphoma Research Foundation and the LLS have grants and programs to help lymphoma patients with expenses related to treatment.

Work

If you and your doctor feel you'll be able to continue work during treatment for Hodgkin lymphoma, talk to your employer about any accommodations you may need. For example, chemotherapy can be exhausting and so you may benefit from a shorter workday.

Some workplaces are required by state or federal law to allow employees going through treatment for a major medical condition to work a flexible schedule. Check with your state's Department of Labor for specifics.

Other sources of information include the Americans With Disabilities Act and the Family and Medical Leave Act.

Daily Life

If you find you need help with day-to-day matters such as meals or transportation to doctor appointments beyond what your family and friends are able to provide, ask your cancer center to direct you to local organizations that provide this type of help.

You might also check with CancerCare, a national organization that provides free, professional assistance to cancer patients. On its website you'll find a Helping Hand feature that allows you to search for specific types of assistance based on cancer type and zip code.

CancerCare also is an excellent source of specific information about lymphoma, financial assistance, and more.

A Word From Verywell

Hodgkin lymphoma is rare and highly curable. Besides getting through the impact of being diagnosed and undergoing treatment, it's important to look forward to life after the experience—a period of time often referred to as survivorship. Many oncologists and cancer treatment centers offer cancer rehabilitation programs designed to help people have a positive "new normal' when treatment is done and to prepare them, for example, for the possibility of secondary cancers or even heart disease related to cancer treatments. Talk to your oncologist and as well as others who have survived Hodgkin lymphoma about navigating your own post-treatment life.

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Article Sources

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