Coping With Lymphoma

How to Deal With the Emotional, Physical, and Financial Challenges

In This Article

Table of Contents

Receiving a diagnosis of lymphoma can be scary and confusing, in part because the disease has no set course. There are many different types of lymphoma, each with their own course of treatment and expected outcomes. In some cases, you may not even require immediate treatment, which can create stresses as you are forced to wait on tenterhooks, wondering if and when the disease will progress.

To better cope with stresses of a lymphoma diagnosis, you need to draw upon resources to overcome the emotional, physical, and practical challenges that invariably face people living with the disease.

Emotional

When first hearing the word "lymphoma," you may be hit by any number of emotions, ranging from panic and fear to anger or guilt. Or, you may just feel numb and be unable to process the news. All of these feelings are normal; there are no wrong or right ways to feel.

As with any cancer, it takes times to come to terms with a diagnosis of lymphoma. While some forms of the disease require immediate action, most cases aren't emergencies per se. You can usually step back, if needed, to catch your breath and sort out your feelings.

With that said, people tend to fare better if they know what's next. Even if it's to schedule a follow-up appointment in the next few days, be sure to have some sort of game plan in place before leaving the doctor's office.

And, don't be afraid to let your doctor know how you are feeling, even if it's to say "I don't know how I feel." Your doctor may be able to offer advice or references that can help.

Communicating

Effective communication is key to coping with lymphoma. If you don't understand what the doctor is telling you, say so. As the person living with the disease, it is important that any and all information be communicated to you in a clear and understandable language so that you make informed choices. This includes understanding:

If you aren't getting the answers you need, do not hesitate to seek a second opinion or to ask for a referral to an oncology social worker who is trained to help people cope with challenges of living with cancer.

You should ask your doctor for quality educational materials written in the language of your choice. The more that you understand about lymphoma, including which treatment options are available, the better choices you can make.

If you are unable to cope and are feeling extreme anxiety or depression, do not hesitate to ask for a referral to a psychologist or psychiatrist who can provide you with one-on-one, group, or family counseling as well as medications to help stabilize your moods.

This includes people who have completed lymphoma treatment, many of whom will experience post-traumatic stress disorder (PTSD).

Physical

Even though nutrition and fitness do not inherently alter the course of lymphoma, eating right, exercising routinely, and quitting cigarettes can help you cope with the rigors of treatment and speed your recovery thereafter. Stress reduction is also key to your success.

By staying in good health, you may find that many more treatments are available to you. You may also be able to tolerate higher doses of chemotherapy and protect you from secondary infections by bolstering your immune system.

Diet and Nutrition

There is no set "lymphoma diet." You simply need to maintain a healthy, balanced diet which includes complex carbohydrates (such as whole grains), lean protein, low-fat dairy, plenty of fruits and vegetables, and healthy monounsaturated and polyunsaturated fats.

Food plans may also need to be tailored to help overcome the side effects of treatment, including nausea, loss of appetite, diarrhea, constipation, and mouth and throat sores.

Among some of the more useful dietary tips:

  • Eat smaller, frequent meals four to six times per day.
  • Sip water or liquids throughout the day to avoid dehydration (ideally no less than eight 8-ounce glasses per day).
  • Limit your intake of caffeine, including coffee, which can increase urination and promote dehydration.
  • If experiencing diarrhea, try the BRAT diet consisting of bananas, rice, applesauce, and toast to help bind loose stools.
  • If experiencing constipation, increase your intake of dietary fiber and non-alcoholic fluids.
  • If you need extra calories, use gravies, sauces, cheese, or toppings.
  • If foods taste bland or metallic, use seasonings, vinegar dressings, and condiments to conceal the taste. Acidic drinks such as lemonade also help.
  • If you have mouth sores, choose foods that can be cooked until soft or drink high-calorie shakes, smoothies, or soups. Avoid anything spicy or acidic.
  • To avoid foodborne infections, wash and peel produce, avoid unpasteurized dairy or undercooked meat or fish, and thoroughly wash your hands and cooking surfaces before and after meal preparation.

Exercise and Relaxation

A 2018 report in the Journal of Global Oncology concluded that exercise and relaxation were equally important in improving symptoms in people with lymphoma, both during and after treatment.

While there is no consensus on which fitness plans are most effective, performing 30 minutes of moderate exercise at least five days weekly is associated with increased survival rates in people with lymphoma. Moreover, routine exercise translates to better social, emotional, and physical well-being compared to adults with lymphoma who are sedentary.

Exercise plans to should be progressive, combining resistance training with aerobic activities to build lean muscle, improve cardiovascular health, and prevent constipation. Doing so can even improve mood and overcome fatigue by stimulating "feel-good" chemicals known as endorphins.

Stress is known to complicate lymphoma by amplifying feelings of anxiety or depression while lowering the overall quality of life. This includes people with low-grade non-Hodgkin lymphoma who often don't require immediate treatment but still bear the emotional weight of the disease.

In addition to exercise and getting plenty of rest, there are a number of mind-body therapies that may help you better manage stress on an ongoing basis. These include:

Although weight loss is integral to achieving optimal health if you are overweight or obese, starting a weight loss program during chemotherapy or recovery is never a good idea.

Cigarettes

Smoking has both a direct and indirect effect on lymphoma. One of the largest studies investigating the association between cigarettes and lymphoma found that smoking increased the risk of follicular lymphoma by 41% in women while increasing the risk of T-cell lymphoma in men by 67% compared to the general population.

Though other major types of lymphoma (such as B-cell lymphomas and chronic lymphocytic leukemia) appeared unaffected by cigarettes, smoking is known to increase the incidence and severity of chemotherapy side effects while reducing the overall efficacy of treatment.

Speak with your doctor about effective ways to quit smoking, including the smoking cessation aids offered by your health insurer. Under the Affordable Care Act (ACA), many of these aids are offered free of charge as part of the ACA's Essential Health Benefits (EHBs). Multiple quit attempts are allowed given the high number of attempts generally needed to kick the habit.

Social

Key to coping with any cancer diagnosis is a solid support network comprised of family, friends, and your oncology team. While you may be reluctant to share your diagnosis with others, doing so can help normalize the disease in your life rather than keeping secrets from those you communicate with regularly. This includes employers or co-workers who you may need to turn to for assistance or time off during treatment.

With that said, you want to be selective about who you share the news with. In the end, you don't need other people's stress to compound your own. You are also not required to tell your employer about your illness even if they provide your health insurance.

When making disclosures, choose people who you know will be supportive and provide you the practical and emotional support you'll need if things get tough.

It also helps to join a support group to connect with others who understand first-hand what you are going through. You can find lymphoma support groups on Facebook or seek offline referrals through your oncologist or local chapters of the American Cancer Society or Leukemia & Lymphoma Society.

The one thing you don't want to do is isolate yourself. According to a 2019 study published in Scientific World Journal, a strong support network promotes adaptive behaviors (a "fighting spirit") in people with cancer while minimizing feelings of hopefulness and the often-debilitating preoccupation with death and illness.

Practical

There are many practical challenges facing people with lymphoma. Chief among these are treatment side effects and the financial costs for therapy.

Hair Loss

Side effects of lymphoma treatment are common. One of the most common concerns is hair loss. Sadly, there is no way to predict who will experience chemotherapy-induced hair loss or to what extent the hair loss will occur.

With few viable ways to prevent hair loss, it often helps to plan ahead and start thinking about wigs, scarves, or other head coverings should hair loss occur (usually two to four weeks after the start of treatment).

People undergoing chemotherapy for lymphoma need to avoid scalp cooling, a technique used to reduce hair loss in other forms of cancer but one that can impede the dissemination of chemotherapy drugs in blood cancers.

Fatigue

Fatigue is also common with chemotherapy, radiation therapy, and targeted biologic drugs like Remicade (rituximab). If faced with treatment-related fatigue, there are things you can do to better cope:

  • Schedule frequent rest breaks throughout the day.
  • Prioritize tasks so you can get the most important ones done when you have the most energy.
  • Adjust your workspace so you don't have to bend or reach.
  • Use a cart to transport groceries and other heavy loads.
  • Avoid extreme temperatures, including hot showers.
  • Maintain good nutrition with ample calories and protein to build energy reserves and lean muscle mass, respectively.
  • Delegate tasks to others, or ask friends for help.

Nausea

Nausea, next to fatigue, is among the most common side effects of chemotherapy. Chemotherapy-induced nausea is often worse with your stomach is empty, so always have light snacks on hand in the event you start feeling queasy.

You should also avoid strong-smelling foods or anything that is spicy or fatty (including cream sauces and deep-fried foods). Foods that cause gas, such as bean, cabbage, and soda, can make nausea worse.

Some people treat nausea by nibbling on dry soda crackers. Others swear by ginger tea or will suck on ginger candies whenever nausea strikes. If your nausea is unrelenting and interferes with your ability to function, ask your doctor about anti-nausea medications. Some of the more effective drug options include:

Infertility

Some of the treatments used for lymphoma are known to cause amenorrhea (the absence of menstruation) or early menopause in women. Although amenorrhea may be reversed once treatment is complete, early menopause is usually permanent and irreversible.

Some men may also experience infertility due to azoospermia (the absence of viable sperm). This may also be reversible or permanent.

The risk of permanent infertility is increased if you undergo intensive procedures, such as a myeloablative stem cell transplant or BEACOPP chemotherapy. If you are younger and faced with such risks, there are a number of fertility options you can explore in advance of treatment:

  • Embryo cryopreservation ("freezing your eggs") is a routine procedure but one that requires a delay in treatment of at least four weeks.
  • Sperm banking and cryopreservation is also an option for men.
  • Ovarian cryopreservation, involving the removal of the entire ovary, is promising but has thus far yielded only a small number of pregnancies and births.

If faced with lymphoma treatment of any sort, speak with your doctor about the likelihood of infertility and what fertility options are available to you. Even if you have never thought about having kids before, losing your fertility can be extremely difficult to cope with.

Getting pregnant while you or your partner is on chemotherapy is never a good idea as some of the drugs can cause fetal harm. Speak with your doctor about appropriate forms of contraception to prevent unintended pregnancy.

Financial Assistance

Even with good health insurance, the cost of lymphoma treatment can be overwhelming. According to 2018 study commissioned by the Leukemia & Lymphoma Society, the cost of treating blood cancers eclipses that of all other forms of cancers, in part because of the ongoing need for treatment.

To better cope with the out-of-pocket expenses, speak with a financial aid counselor prior to undergoing treatment. Most larger oncology practices maintain a counselor on staff for such purposes. You can also work with an oncology social worker who is experienced in navigating the various assistance programs available to people with cancer. These include:

Financial assistance eligibility varies by program but is usually based on an annual income of below 300% to 500% of the Federal Poverty Limit (FPL).

You can call the program directly to establish the eligibility criteria and request an application form. Verification of your diagnosis by your ongoing will also be needed.

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Article Sources

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