Quality of life is a measure of how comfortable a person is physically, emotionally, socially, and/or spiritually. Living a high quality life is everyone's goal.

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Managing Quality of Life

While we tend to focus on whether or not surgery is possible or which chemotherapy to give, we absolutely should not forget the small, day-to-day things that can impact a patient's quality of life. Broadly, these include:

  • Diet & Nutrition- Patients with pancreatic cancer often feel bloated, particularly after they eat. Several things can help. Multiple small meals, over the counter proton pump inhibitors, and in some instances, pancreatic replacement enzymes (given by prescription) can all help.
  • Pain- Patients with pancreatic cancer often suffer from pain. It is very important to remember that pain can be managed with medications and as outlined in the treatment section, there are a number of approaches to controlling pain. We recommend that you obtain a consult from a pain specialist if your pain isn't managed.
  • Physical Activity- Maintaining an active life style is important for one's physical and mental health. The National Cancer Institute has outlined many of the benefits of physical activity. As they note, aerobic training and/or resistance exercise during and after cancer treatment can reduce anxiety, depressive symptoms, and fatigue and improve quality of life.
  • Depression- Patients with pancreatic cancer often suffer from depression. You don't have to be depressed. Seek help from a psychiatrist as psychiatrists can prescribe anti-depressants and other medications which may help. Many patients also find that a holistic approach to their care helps alleviate anxiety.
  • Holistic Care- Complementary and alternative medicine approaches may alleviate symptoms in patients who have been diagnosed with pancreatic cancer.

Greater details on day-today care and managing various quality of life issues are provided below.

Diet & Nutrition   

It is very difficult for pancreatic cancer patients to maintain weight for several reasons. Many patients lose their appetite and the normal taste of food as a result of byproducts released from the cancer. Even the food that is eaten may not always be digested well because the pancreas is not working properly. If the pancreatic duct is obstructed or after surgery, the pancreas may not release sufficient amounts of pancreatic enzymes.Therefore some patients will benefit from taking pancreatic enzymes. Unfortunately, the problems with weight do not end there. The majority of patients with pancreatic cancer will still lose weight even if they are eating and digesting their food sufficiently. Many pancreas cancers (and other cancers) release compounds into the blood that breakdown muscle and fat (causing cachexia). So that over time patients will find they are not only slimmer but their muscles are smaller and they become progressively more fatigued. Pancan.org has published a very informative Diet and Nutrition booklet. You can request his booklet and recipe suggestions on their website. To learn more, download the pdf below.

Diet & Nutrition Guidelines

Physical Activity   

Jogging

Author: JoAnn Coleman, RN, MS, ACNP, AOCN

Physical activity levels tend to decrease after cancer diagnosis and treatment. Even though one may feel fatigued, regular light physical activity should be encouraged.

Regular activity may:

  • Improve appetite
  • Stimulate digestion
  • Prevent constipation
  • Maintain energy level
  • Muscle mass
  • Provide relaxation or stress reduction
  • Lower levels of anxiety

Increased levels of physical activity can improve overall quality of life. In choosing a level of activity, it is important to take into consideration the patient's physical functioning and previous levels of activity.

Physical activity should be individualized, initiated slowly, and progress gradually. A nutrition and physical activity plan should be customized for each patient to help rebuild muscle strength and correct problems with anemia or any impaired organ functioning. Adequate food intake and physical activity are crucial to patients recovering from any treatment for pancreatic cancer.

If a patient has limited mobility or is confined to bed rest, physical therapy in bed should be initiated to maintain enough strength and range of motion of joints. Physical activity can help counteract the fatigue spiral and feelings of low energy that some patients experience under those circumstances. Various medications and physical activity can help to increase appetite, and if needed, nutritional support can be provided in other ways for those who cannot eat enough. When patients are in the terminal stages of their disease, it is always necessary to listen to the wishes and decision of the patient regarding the intake of food or fluids.

Advice from a health care provider qualified in nutritional assessment can be helpful in assessing problems with eating and physical activity and in creating an individualized plan to meet specific challenges.

Emotional, Social & Spiritual Concerns   

Depressed woman

Emotional Issues

Let your care team know if you're having any emotional issues since effective treatments are often available. If you or someone you love is having these symptoms, talk to the care team to see what they think. In some instances, this may be the time to consider hospice care, which can make the person and their family more comfortable.

Social Concerns

Sometimes people struggle with changes to their social situation or roles. They may have been very independent or taking care of others and now find that they need help themselves. People with cancer are often more concerned about their loved ones than they are about themselves. Financial issues can also be a concern. Let your care team know if these things are bothering you as they may have resources to help you with them.

Spiritual Concerns

Serious illness like pancreatic cancer can also cause people to ask questions about why this has happened to them or to try to find the meaning in such a situation. Many who are religious find their faith is an important way to cope with illness. They may find comfort in spiritual practices or talking with a spiritual leader. Even if someone is not religious, talking to someone about these important concerns can help. A medical chaplain or counselor on the cancer team can help address these important questions. Your cancer team should be able to connect you with someone to talk with if you don't know anyone on your own.

Holistic Care   

Acupuncture 3

Acupuncture

Acupuncture originated in China more than 2,500 years ago and spread first throughout Asia, and later to Europe and the Americas. While acupuncture has been offered in Asian communities throughout the United States for many generations, it is only since 1970, following the opening of China to the West, that this system of health care has been available to the general population in this country. Acupuncture is a principle modality of Eastern medicine which focuses on healing within a unified system of body, mind and spirit. As a result, acupuncture is generally used in conjunction with herbal, massage, diet and exercise therapies to maximize health, prevent illness and treat disease.

According to Western medicine, the effects of Acupuncture are probably the result of stimulating the nervous system to release chemicals which may in turn release other hormones producing the desired effects. This theory is supported by the basic research work which has shown acupunctures effect on ACTH, insulin, thyroid hormones, growth stimulating hormone, beta-endorphin, white blood cell production and plasma cholesterol levels. Acupuncture may work on an electromagnetic bio-information system. In traditional Chinese Medicine training, acupuncture is believed to modulate the flow of energy (Qi) in its channels, or meridians, to restore balance.

Although electrical stimulation, lasers, heat/moxibustion or pressure may be used to manipulate Qi meridians, treatment with acupuncture needles is the most commonly used technique. In an acupuncture session, acupuncturists may insert and remove the needles quickly or leave them in for longer periods of time, often with the application of heat or electrical impulses. Typically, 3-15 long thin solid needles are placed in various locations according to the meridians, not necessarily at the anatomic site of symptoms.

Acupuncture is a gentle therapy. People often find it so relaxing that they fall asleep during therapy with the needles still in! Acupuncture needles are extremely thin (the width of a hair) stainless steel and very flexible. Insertion of these needles is usually painless. The sensation during acupuncture needle insertion varies between individuals and points chosen by the acupuncturist.

In general, adverse reactions to acupuncture are minimal, although case reports of complications do exist. Bleeding rarely occurs. Infection is minimized by most practitioners through the use of sterile disposable needles, one time use, which is recommended. Allergic reaction to the stainless steel needles is also rare. Pain varies by patient, but treatment is usually painless or slightly painful. Some patients report feeling temporary exacerbation of their symptoms. For patients receiving auricular (near the ear) treatments, the possibility of chondritis (inflammation of the ear cartilage) exists, although it is rare.

Acupuncture

Questions: Do the Needles Hurt?

Acupuncture is a gentle therapy. People often find it so relaxing that they fall asleep during therapy with the needles still in! Unlike their western counterparts (Hypodermic hollow needles, or shots) acupuncture needles are extremely thin (the width of a hair) stainless steel and very flexible. Insertion of these needles is often painless. The sensation during acupuncture needle insertion varies between individuals and points chosen by the acupuncturist. Once the needles are in place there is no pain at all. Acupuncture needles are all sterile, one time use.

How do I prepare for acupuncture?

The following guidelines are meant to enhance your response to treatment:

  • Wear loose fitting clothing
  • Eat a few hours before treatment (Do not come on an empty stomach, if possible)
  • Refrain from drinking alcohol on the day of treatment
  • Continue to take all prescription drugs
  • Refrain from taking recreational drugs. Recreational drugs interfere with the effectiveness of treatment
  • Keep notes about your response to treatment. Your acupuncturist may base the next treatment on your response to treatment

Indications for Acupuncture

  • Pain
  • Nausea and vomiting
  • Neuropathy
  • Dry mouth
  • Fatigue
  • Anxiety
  • Depression
  • Insomnia
  • Smoking reduction

Research

  • The World Health Organization recognizes acupuncture as being helpful for over 140 different problems
  • National Institutes of Health indicates that there is clear evidence in that acupuncture is effective for chemotherapy- related nausea and vomiting
  • Recent research has demonstrated acupunctures effectiveness in treating fatigue related to cancer treatment, and pain

Learn about Acupuncture Services at Johns Hopkins.

Final Stages of Illness   

Symptoms like a complete loss of appetite, extreme fatigue and the abdominal swelling called "ascites" can be signs that pancreatic cancer is moving into the final stage. Many patients also lose energy and end up sleeping more. This is also natural but can be addressed if the person is finding the fatigue overwhelming. Finally, the ascites can be reduced through a procedure called "paracentesis" where a needle is inserted into the abdomen and fluid slowly drawn out. However, the fluid will come back, so this procedure can only be done every week or two.

What to Expect About End of Life Care

Things To Take Care Of

Although people dealing with pancreatic cancer usually hope for the best (we sincerely believe that there is always hope!), it is always a good idea to also plan for the worst. The following are things that should be considered for anyone with a serious illness. Completing them provides peace of mind for both the person with cancer and those who love and care for them.

Naming someone to make healthcare decisions for you   

It is important to think of who could make decisions for you if you should become too ill to make them for yourself. This decision maker can be anyone you trust and should be someone who knows you, your values, and what your wishes are for medical treatments. Talking about such things can be difficult, but people usually say the peace of mind afterwards is worth it. There are documents to confirm these decisions, called "Advance Directives." Each state has its own format for Advance Directives. Not all require a lawyer, but most need to be completed in front of witnesses unrelated to the person completing the form. There is a very helpful format called "The 5-Wishes" which is recognized in 42 states and useful in all 50. Also, remember to check your local state for forms specific to your state of residence.

A Living Will   

This is a document that talks about what kind of care you would want should your cancer move into its last or terminal stage. Families often say that knowing such wishes for care in advance is a gift to them. It helps them make appropriate decisions should they ever have to, which can ease the burden of such difficult situations. Your cancer team can help you access the Living Will format recognized in your state, but there are also very helpful websites that can walk you through this process, such as Prepare For Your Care website.

Treatment Goals   

While most people with pancreatic cancer will want to be treated for their cancer sometimes treatments can have side effects that can be worse than the cancer. If you are having significant complications with your cancer treatment, you may want to consider talking with someone. It is important to talk to your cancer team about your treatment goals. For example if a cure is not possible, some patients consider alternate treatments that are more focused on comfort. Doctors understand that people sometimes need to change their treatment goals and should help you make those decisions with clear information about prognosis, side effects, and what alternate options are.

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