Coping With Leukemia

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Coping with leukemia involves much more than finding a good doctor and going through treatment. You will need to manage physical concerns, like preventing infections or new issues that may arise years or decades into your survivorship. The emotional roller coaster of prolonged treatment, as many describe it, becomes more of an endurance challenge than a sprint. Even daily life can be impacted, from social issues like relationship changes to the need to now deal with your disease in addition to routine responsibilities. Live your best life with leukemia by adopting strategies that can help ease the way.

Emotional

The emotions associated with a diagnosis of leukemia can't be described in one, two, or even a dozen words. Many people experience widely fluctuating emotions, sometimes in a single day. Although some people are surprised at the variety and depth of feelings, there is no right or wrong way to feel at any one time.

Ups and Downs

Few people, even those who have lived with other types of cancer, fully understand the roller coaster ride of leukemia. Some people think of cancer as something that is treated, and then a person lives or dies; fewer people understand that treatment can take a long time or be lifelong. With acute leukemias, induction treatments can be aggressive, and consolidation and maintenance treatments may continue for years. With chronic leukemia, treatment may continue for the rest of your life. Even when the aim is a cure, it may take years to get there.

Isolation

Fatigue and the sheer nature of leukemia treatment can lead to isolation. Induction chemotherapy, and especially the high-dose chemotherapy given before a stem cell transplant, can put people at a very real and serious risk of infection. And even when friends and family are healthy, special precautions are often recommended during visits. With acute leukemias such as AML, initial treatment often requires hospitalization for at least four to six weeks, which is quite different than the outpatient infusions done every few weeks for other cancers that many are familiar with.

Positive Changes

Phone calls, texts, and video conferencing can help people stay in touch and a tremendous impact. You may need to invite others to communicate with you in this way—even saying that it would be helpful—as some may feel reaching out is "bothering you."

That said, some of the best emotional support may come from those who know firsthand what you're experiencing. Taking part in a leukemia support group can be invaluable as you can talk with others coping with some of the same challenges. You can talk to your oncology nurse about in-person meetings, or check for local support groups through the Leukemia and Lymphoma Society. You can also seek out an online group, which can be especially helpful if you're physically unable to travel or leave the hospital.

While nobody would ever wish to be diagnosed with leukemia, the road isn't all negative. Studies are now telling us that cancer can change people in positive ways. Knowing that compassion, empathy, and life purpose improve for the majority of people with cancer certainly wouldn't prompt anyone to wish for the diagnosis. But, when living through those dark moments of isolation, sadness, or fear, thinking of these silver linings may be of some comfort.

A Note About Infertility

Chemotherapy, radiation therapy, bone marrow and stem cell transplants can all affect your fertility. In fact, this is a common occurrence with leukemia patients, especially those with acute leukemia.

If you have a desire to have children, your doctor likely discussed fertility preservation options before your treatment began, and you may already have a plan in place as to when you can consider trying to get pregnant and what that might involve, physically. While that can be comforting, the prospect of challenges can be overwhelming. Consider speaking to a therapist if you are feeling this way.

Physical

There are a number of physical issues that can arise during leukemia treatment or even well after it is behind you.

Transfusions

The need for transfusions (red blood cells, platelets, white blood cells, plasma and cryoprecipitate, gamma globulin, or albumin) is very common with some forms of leukemia. Not only can cancer cells in the bone marrow lead to low production of the different types of blood cells, but the treatments for leukemia can reduce blood counts as well. While they are now very safe (the blood is screened for many infectious diseases), there is always a small risk associated with blood transfusions.

If you will be having transfusions, it's important to be familiar with signs of a transfusion reaction, such as fever and chills, a rash or itching, shortness of breath, dark urine, and others. Since many people who have a reaction state that the first symptoms are simply feeling "different" or "weird," let your doctor know if you have any symptoms that concern you.

Long-term, transfusions may result in iron overload. When the body receives too much iron, as can be the case with this treatment, it stores the extra iron in the liver, heart, and endocrine glands. For those who have many transfusions (in general, more than 20), chelation therapy may be considered depending on a blood test called serum ferritin.

Mouth Care

Chemotherapy drugs, especially anthracyclines such as Cerubidine (daunorubicin), can lead to inflammation and mouth sores (mucositis), as well as taste changes.

While mostly a nuisance, mouth sores can interfere with good nutrition and increase the risk of secondary infections such as thrush. Making sure to brush your teeth and gums regularly with a soft toothbrush and mild toothpaste (such as baking soda) is important. Avoid mouthwash as it can worsen symptoms.

Some people have used home remedy mouth rinses, such as one teaspoon in baking soda in a cup of water, but your oncologist may prescribe a mouth rinse known as triple mix or magic mouthwash. With any of these solutions, the rinse is usually swished and swirled in the mouth for around 30 seconds, and then spit out without swallowing.

For mouth sores, it's helpful to avoid foods that are spicy, salty, or that contain citric acid, such as tomatoes. Soft foods such as mashed potatoes and cottage cheese are usually well tolerated, as are melons, strawberries, and apple juice.

The "metal mouth" taste changes aren't usually serious, but can be very annoying. Some people find it helpful to use plastic dinnerware and to eat a variety of foods cold or chilled. Beef and pork tend to be the most bothersome foods. Since much of taste comes from the sense of smell, drinking fluids through a straw may also reduce this symptom.

Fatigue

Fatigue is one of the most common symptoms that people mention while coping with leukemia. Cancer fatigue, unlike ordinary tiredness, usually persists even with rest and limits daily activities. Some causes of cancer fatigue may be treatable, and it's important to talk to your doctor even if you believe the symptom is primarily a nuisance and not serious.

Coping with fatigue during treatment can be made easier by asking for help (and allowing others to help), prioritizing activities, pacing yourself so that you don't overdo it on days you feel well, and planning activities that must be done at the time of day you feel best. Some of the alternative treatments for cancer, such as yoga, meditation, relaxation, guided imagery, and more, have also been effective in reducing fatigue for some people.

Pain Control

Some people with leukemia have significant pain, whereas others have minimal or no pain. The first step in coping with pain is to understand that you don't have to simply tolerate it to be considered "brave." Sometimes the most courageous thing a person can do is admit to their oncologist they are having pain, and to talk about ways to address it. Pain can have a negative impact both emotionally and physically when living with cancer.

The first step in evaluating cancer pain is to determine the type of pain. There are many different types of pain with leukemia, ranging from bone pain (due to overactive bone marrow) to nerve-related pain (neuropathic pain), and each is treated uniquely.

There are a number of methods to manage cancer pain, and a combination of a few of them is usually most successful. This may include both opioid and non-opioid pain medications, interventional pain techniques such as nerve blocks and spinal cord stimulation, as well as integrative therapies such as transcutaneous electrical nerve stimulation (TENS), acupuncture, and massage (which can release endorphins). Stress reduction has also been found to reduce the amount of pain for people living with cancer. If you are struggling, your oncologist may refer you to a pain specialist.

Immunizations

There are a few important issues regarding immunizations for people living with cancer. Live vaccines are live but attenuated organisms that have the potential to cause an infection in people who are immunosuppressed. Live vaccines should not be given to people who have neutropenia due to cancer treatment.

People who are immunosuppressed should also avoid contact with others who have received live vaccines, since there is the potential for viral shedding, and hence, the risk of infection. Examples of live vaccine include FluMist (the nasal flu vaccine), yellow fever vaccine, Varivax (the chickenpox shot), Zostivax (the shingles shot), Rotarix (for rotavirus), BCG (the tuberculosis vaccine), adenovirus and oral typhoid vaccines.

There are some recommended immunizations during cancer treatment, and vaccines may be considered if the risk of infection due to the bacteria or virus is greater than the risk of the vaccine itself. While inactivated vaccines are usually safe (with a few exceptions), they are not always effective when the immune system is not functioning normally. Immunizations may also be ineffective for those who are being treated with Rituxan (rituximab) or other monoclonal antibodies for leukemia.

Following a stem cell transplant, recipients do not receive any benefit from the flu shot in the first six months following the transplant. People who are on steroids as part of a chemotherapy regimen may have an increased risk from the flu vaccine.

It's important to talk to your oncologist about timing, as everyone is different, but immunizations usually work better if given at least two weeks before chemotherapy is started or four weeks after chemotherapy is completed. If given during the middle of chemotherapy, many oncologists recommend giving the vaccination just prior to a next cycle when white blood cell count is highest, but this can vary depending on the specific chemotherapy regimen.

While people with cancer are not more likely to develop the following infections, those who do become infected are more likely to become ill or die with the disease.

  • Pneumonia: Pneumococcal pneumonia is the leading cause of vaccine-preventable death. For people with cancer who have not previously been vaccinated, Prevnar (PCV13) should be given first followed by PPSV23.
  • Influenza: According to the Centers for Disease Control (CDC), influenza causes 140,000 to 710,000 hospitalizations each year in the United States, and 12,000 to 56,000 deaths. Fluzone is the form of the influenza vaccine that is recommended for people who are immunosuppressed.

Infection Risk

Infections are the leading cause of illness and death among people receiving treatments such as chemotherapy or stem cell transplants for leukemia. There are a number of ways people can reduce the risk of infections while immunosuppressed including:

  • Practicing precaution with pets: It's best to have someone else clean the birdcage, aquarium, or litter box, or pick up after the dog. Avoiding reptiles is also recommended.
  • Practicing precaution with food: Foodborne illnesses can be serious. A neutropenic diet, which is often recommended, encourages practices such as avoiding raw eggs, meat, or seafood; carefully inspecting and washing all fruits and vegetables; avoiding soft cheeses, such as brie or blue cheese; avoiding honey, and more.
  • Avoiding crowds and people who are ill
  • Washing hands often (and making sure friends and family wash theirs as well)

For those who have been exposed to influenza, treatment may both reduce the risk of getting the infection and reduce its duration if you do become ill. Drugs such as Tamiflu (oseltamivir), Relenza (zanamivir), and Rapivab (peramivir) are most effective when started as soon as possible after exposure.

Social

Your social circle and place in it can change when you have leukemia, as can your interactions with others. Close friends may disappear because they are unsure of how to deal with things. New friends, often those who have faced cancer themselves or in a loved one, may appear. Your role in your family may change, which can be both helpful and stressful. Certainly, this is not the case for everyone, but it is good to be aware of the possibility.

Furthermore, your interactions with others can become strained or even burdensome as you work to navigate your disease and focus on what's most important—your health.

Communication

As with others situations in life, good communication is essential. This may include saying no when you may once have said yes, and maintaining strong boundaries, even if you must reinforce them time and time again.

It's also important to honor your own wishes and needs. With the number of treatment options now available with leukemia, conflict easily arises when friends and family express that prefer you take a different approach. You may need to calmly and sincerely thank people for their suggestions, but firmly let them know that the choice is yours alone.

Keep in mind, and remind your loved ones, that nobody can read minds. Being direct, rather than simply hoping someone will see a need or recognize a feeling, can lessen the chance that you or your loved one will be hurt or harbor resentment.

When facing leukemia, you will have limited energy and don't need to return every call you receive. Giving yourself permission to only talk with those who you feel up to talking with can go a long way in reducing stress and coping with fatigue.

To keep loved ones in-the-know and take advantage of their offers of assistance, consider using one of the many online tools available for just this purpose, or having someone do so for you.

Sites such as CaringBridge and others can help you provide updates to all your family members and friends without spending hours on the phone. Some people enjoy writing journal entries, while others designate a friend to make updates periodically. Reading the comments can help you feel connected and provide support. MyCancerCircle is a private support community of caregivers who are caring for a friend or family member with cancer. Lotsa Helping Hands is another site where people can sign up to bring you meals, provide rides, and much more.

Practical

When you're diagnosed with cancer, it would be nice if the world would slow down a little. But day-to-day issues don't go away and can feel overwhelming when combined with the full-time job of living with many types of leukemia.

Finances

Medical bills can drain even a robust portfolio given the types and lengths of treatments used for many forms of leukemia. As a first step, carefully review your insurance policy, calling and asking questions about anything you don't understand. Prior authorization for treatments may be required, and certain steps may need to be taken to ensure you are covered.

There are options for financial support with cancer, but this can also take some digging. Talk with someone at your cancer center about options that are available. Some of the blood-cancer charities and organizations may also provide financial assistance or direct you as to where to look. With children, you may wish to check out some of the wish granting organizations as well.

Be Your Own Advocate

When it comes to living with leukemia, perhaps the most important advice is to be your own advocate in your cancer care. This includes learning as much as you can about you or your loved one's cancer. It means asking a lot of questions. It means reaching out to others who may have answers—for issues ranging from treatment options to financial help—when you don't have the answers yourself.

Not only can advocating for yourself help you feel more in control of what is happening, but it may actually improve outcomes as well.

For Friends and Family

Few people experience cancer in isolation, and leukemia should be thought of as a "family disease," as loved ones are affected in so many ways. The feeling of helplessness can be particularly challenging. Conflict is also extremely common. No two people are alike, and disagreements can arise over treatment choices and much more.

In addition to respecting your loved one's wishes and taking the time to listen (and realize you don't need to and often can't "fix" things), making sure to care for yourself is critical. Lack of sleep, skipping meals, and lack of downtime are major causes of stress that can not only impact you, but your ability to provide support.

Survivorship

With the improvements in leukemia treatments and survival rates, many people live for years or decades after treatment (or while continuing treatment), and the concept of "survivorship" is now being addressed more frequently.

Survivorship Care

When treatment is completed, many oncologists are now completing a survivorship care plan for their patients. The American Society of Clinical Oncology now has guidelines on survivorship care. This includes long-term follow-up guidelines for children, adolescents, and young adult cancer survivors, as well as guidelines for screening for and managing the late effects of cancer treatment.

Unfortunately, even when people survive leukemia and are considered "cured," health problems related to treatment can reduce quality of life. The prevalence of late effects in adults is less well known, but it's been found that between 60 percent and 90 percent of childhood cancer survivors have one or more chronic health problems related to previous cancer treatments such as chemotherapy.

Some of the late effects of cancer treatment found in both adults and children include long-lasting fatigue, cognitive problems ("chemobrain"), bone thinning and osteoporosis, heart problems, peripheral neuropathy, and secondary cancers.

Just as survivorship care plans and guidelines have been developed, cancer rehabilitation (such as the STAR program) has been adopted in many cancer centers to help people cope with these long-term effects. For many of these problems, there are therapies that can improve quality of life.

Late effects of treatment can also be social and practical, such as learning issues in children, job discrimination, and difficulty obtaining health and life insurance in adults. Several organizations can help people cope with these concerns. An example is the not-for-profit Cancer and Careers, an organization that helps people with cancer navigate employment both during and after treatment.

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