Coping With Hodgkin Lymphoma

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From diagnoses to post-treatment (survivorship), coping with Hodgkin lymphoma 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 running a marathon, 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 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.\

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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. At the very least, use your cell phone to record important conversations with your doctor.

Allow yourself to feel your feelings. They're likely to ping-pong all over the place. Recognize that anything you're feeling or even not feeling is normal. Don't beat yourself up for feeling scared or try to find reasons to blame yourself for your diagnosis.

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 darkest 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—is another story. Both have common side-effects that can be uncomfortable, inconvenient, and emotionally challenging including, in the case of chemotherapy, potential problems with future fertility.

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 physically and emotionally 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—see below). Let your doctor know how tired you've been so that he or she 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 10 to 25 percent 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) also may be useful.

Treatment Side-effects

Hodgkin lymphoma typically is treated with chemotherapy and, sometimes, follow-up radiation. Both have side-effects you should know about.

Nausea and vomiting. Once one of the most feared side-effects of chemo, these unpleasant symptoms have become less severe and less common in recent years thanks to modern medicines formulated to be less distressing to the gastrointestinal system. Many people now have little or no chemotherapy-induced nausea. Still, it's not unheard of. There are quite a few anti-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, 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 Head Off Nausea and Vomiting During Chemo

  1. Eat small, frequent meals
  2. Do not drink fluids during meals—but 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 truly is a distressing side effect of chemotherapy, and well-meaning "It will grow back fast" comments aren't likely to help. True, for a period of time you'll be free of the minor annoyance of shaving, and you may find you enjoy freedom from blow dryers. However you choose to reframe the potential "plusses" of hair loss, 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 while brushing 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 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 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 for contact with any potential pathogen, such as wiping your toddler's runny nose
  • Wash your hands often and well

Radiation dermatitis. Radiation sometimes is used after chemotherapy for Hodgkin lymphoma. Among the most common side effect 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 and 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 directed 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 itch 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 product 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.

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 radiation fibrosis without treatment. Radiation to the abdomen may cause nausea, and usually results in permanent infertility as well.

Impaired fertility. Chemo can either destroy reproductive structures or render them impaired, increasing the possibility of fetal anomalies. To get around these potential assaults on future fertility, plan ahead. For men, freezing sperm is relatively easy. For women, the best option is to freeze fertilized embryos (freezing eggs is a less established technology). A perinatologist (who specializes in caring for women who have had cancer) can help you understand your options and alleviate your anxiety.

Social

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

  • 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.

None of these should stop you from seeking help and support, or accepting it when offered.

At the same time, you may find it's easier to lean on non-family members in the form of a local cancer support group. You should be able to find one made up of other patients with Hodgkin lymphoma through your cancer treatment center or oncologist. If there are no dedicated HL support groups, seek out one that focuses on your stage of cancer—newly-diagnosed, for example, or at the end stages of cancer treatment.

Online Hodgkin lymphoma support communities also can provide excellent support and resources. These communities give you the opportunity to talk with others facing the same disease (or subtype or stage). Many groups share their experience with the latest advances in treatment and know about on-going clinical trials, so in addition to emotional support, these groups can be very informative.

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. Be sure to talk to your oncologist about navigating your own post-treatment life Doing so will help you to go from cancer patient to healthy cancer survivor.

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