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Disease Information
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Pain Management

Key Facts About Pain
Acute and Chronic Pain
Breakthrough Pain
Assessing and Managing Pain is Important
Blood Cancer-Related Pain
Talking to Your Physician About Pain
Pain Treatment
Ten Important Pain-Management Reminders

Key Facts About Pain

Some patients with leukemia, lymphoma, myeloma, myelodysplastic syndromes and myeloproliferative diseases (blood cancers) may experience pain related to the cancer and/or its treatment.

Pain assessment is an important part of any medical evaluation, and pain management is an important part of care. Left untreated, pain can suppress the immune system, delay healing and is often leads to depression. So, pain should be properly assessed and effectively managed throughout treatment and recovery.

When pain is accompanied by persistent depression, for example, if a person feels depressed every day for a two-week period, it is also important to seek medical advice.  Depression is an illness that needs to be treated even when a person is undergoing treatment for other conditions.

Pain varies in its intensity and may be short-lived (acute) or persist beyond the normal course of healing from a disease or injury (chronic).

There are many options available to effectively manage pain; patients whose pain is not adequately controlled should ask to be referred to a pain specialist. Also, studies are under way to better understand pain associated with various types of cancer and cancer treatments, and to find more effective treatments to relieve pain.

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Acute and Chronic Pain

There are two main types of pain: acute and chronic. It is important to talk with your physician about any pain you experience.

Acute Pain

Chronic Pain

  • Sudden onset
  • Temporary (up to three months)
  • Pain lessens over time
  • Stress response may be present (increased heart rate, blood pressure, breathing) 
  • Nature's "red flag" warning signal 
  • Sudden or gradual onset
  • Persistent (beyond usual healing time or beyond three months)
  • Pain can be constant or come and go
  • Stress response often absent
  • Considered a disease state—serves no useful purpose

Acute pain is nature's signal to change a harmful behavior or seek medical attention. For example, if a person steps on a piece of glass or leans against a hot surface, he or she would experience acute pain. Acute pain is ends once an injury has healed.

There is no useful purpose for chronic pain; it changes the nervous system and is, therefore, a disease.

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Breakthrough Pain

The term "breakthrough pain" describes a brief, sometimes severe, flare of pain that person who is taking pain medication may experience. In other words, the pain "breaks through" the regular pain medication schedule.

Breakthrough pain can start:

  • As pain medication is wearing off, before the next dose is due
  • From a pain-producing activity or event (for example, remaining in the same position for too long, or from certain sudden movements)

It can occur even when a person is following the correct dosage and schedule for pain medicine. Be sure to tell your physician if you have episodes of breakthrough pain.

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Assessing and Managing Pain is Important

Pain assessment is an important part of any medical evaluation. It is as important as measuring blood pressure, pulse, breathing rate and body temperature. Unrelieved pain may cause needless suffering and:

  • Limit the ability to work, exercise, sleep, perform everyday tasks (for example, going to the grocery store, dressing) 
  • Make it harder to heal or fight infection by weakening the immune system
  • Reduce appetite
  • Lead to anxiety and depression, which can worsen pain sensation
  • Place a strain on relationships with family and friends
  • Reduce intimacy with a partner

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Don't Delay Seeking Pain Care

A person who has pain should seek pain treatment early to avoid additional health problems later on. Some people find it difficult to talk about their pain. They might have trouble finding the right words to describe how the pain feels. According to The American Pain Foundation and other experts, studies show that people with cancer may delay seeking the pain relief they deserve because they:

  • Falsely believe relief is not possible and that pain is an inevitable part of cancer
  • May not want to acknowledge the pain in case it is a sign of disease progression or a recurrence
  • Fear that asking for pain relief may distract the physician from treating the cancer
  • Want to appear strong and brave 
  • Worry about becoming addicted to pain medicine
  • Mistakenly believe that early pain relief may mean the medication will not work in the future

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Blood Cancer-Related Pain

Pain may result from your disease or its treatment. However, having pain does not necessarily mean your cancer is getting worse. Here are some possible ways in which blood cancers may result in pain.

Leukemia or Myelodysplastic Syndromes

  • Some patients have bone or joint pain. This pain usually results from the bone marrow being overcrowded with cancer cells. At times, these cells may form a mass near the nerves of the spinal cord or in the joints.
  • In acute lymphocytic leukemia, bone pain occurs in approximately 25 percent of patients at the onset of the disease. This is less common with acute myelogenous leukemia or myelodysplastic syndromes.
  • When bone pain does occur, the pain is most often felt in the long bones of the arms and legs, and in the ribs and the sternum of the rib cage. Joint pain and swelling in the large joints, such as hips and shoulders, may not begin for several weeks after bone pain begins.

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Lymphoma Hodgkin and Non-Hodgkin Lymphoma

  • Usually begin with painless swelling of lymph nodes-often in the neck, armpit or groin.
  • During the course of the disease, complications of the lymphoma and its treatment may cause pain, for example, chest, abdominal or bone pain.

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Myeloma 

  • Bone pain, most notably in the back or chest and occasionally in the arms and legs, is present in more than two-thirds of patients when they are first diagnosed with myeloma.
  • Masses of cancer cells build, especially in the marrow, destroying normal bone tissue, possible fractures of long bones and collapse of vertebrae, resulting in pain.
  • Bone pain caused by myeloma may be severe, but when successfully treated with chemotherapy, there is usually a marked improvement.

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Myeloproliferative Diseases (Essential Thrombocythemia, Polycythemia Vera, Idiopathic Myelofibrosis)

  • Patients with essential thrombocythemia may experience headaches and/or a burning or throbbing pain in the feet, which is sometimes worsened by heat, exercise or when the legs are hanging down for long periods. This is because of reduced blood flow to the feet and toes.
  • Patients with polycythemia vera may have gout, a painful inflammation of the joints caused by increased levels of uric acid associated with the disease.
  • Patients with idiopathic myelofibrosis experience severe upper left shoulder pain (reflecting the referred pain from the spleen, sometimes as the result of impaired blood flow to part of the spleen). In rare cases, there is bone pain, especially in the lower extremities.

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Pain Related to Side Effects of Treatment

Sometimes the toxic side effects of standard drug therapies or radiation therapy used to treat blood cancers can result in, or lead to, uncomfortable symptoms, including pain. Here are some examples:

  • Radiation and chemotherapy damage cancer cells, but these treatments also affect normal cells, causing pain and discomfort. Dry skin, difficulty swallowing and  mouth sores are some other common side effects of chemotherapy and radiation therapy. Some drug therapies and radiation therapy may damage the peripheral nerves, called cause "peripheral neuropathy."

Click here for more details about radiation therapy.

More information about managing the side effects of drug therapy is available in the free LLS booklet Understanding Drug Therapy and Managing Side Effects.

  • Bone marrow biopsy and aspiration can be painful, so medication may be used to reduce the pain. Some patients will experience slight bone pain and/or discomfort where the needle was inserted for a few days after the procedure.

See the free LLS booklet Understanding Lab and Imaging Tests for more information about diagnostic tests and pain management.

  • Stem cell transplantation is associated with painful oral ulcers, called oral "mucositis," which may develop as a consequence of the harsh conditioning therapy (high-dose chemotherapy and/or radiation therapy) given prior to stem cell infusion for some types of stem cell transplants.

See the free LLS booklet Blood and Marrow Stem Cell Transplantation for more information about oral mucositis and other complications.

Cancer therapies can also weaken the immune system, which is why shingles (a painful reemergence of the chicken pox virus, varicella zoster) is common among patients who are in active cancer treatment.

All side effects from treatment, including pain, should be reported to the physician. Most side effects from pain medicine (for example, fatigue, gastrointestinal problems) can be managed as long as you tell your physician about them.

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Talking to Your Physician about Pain

You play an important role in achieving good pain control. Only you know how much pain you feel, where it hurts and for how long. Good communication will help your physician to understand and treat your pain. The American Pain Foundation recommends these ways to describe your pain:

  • Where your pain is located (does it occur in one or multiple areas?)
  • When the pain occurs and how long it lasts (are there certain times of the day that are worse than others, and is the pain constant, or does it come and go?)
  • What makes it better or worse (Have you found ways to ease the pain by applying heat or cold, or sitting or lying in certain positions? What makes it worse?) 
  • Do you have other related symptoms (for example, numbness, depression or nausea?)
  • Give examples from your daily life to help your doctor understand how your pain is affecting you (for example, tell your provider about any activities you can no longer perform because of your pain) 
  • How the pain feels (is it dull, aching, sharp or burning?)

If you are scheduled for a medical or surgical test or procedure, ask your physician:

  • How much pain to expect
  • How long it may last
  • How the pain will be managed before, during and after the procedure
  • Any signs or symptoms that you need to report to your physician right away.

It may help to:

  • Write out your questions ahead of time and bring them with you to your medical appointment
  • Share your concerns; there are no silly or dumb questions
  • Consider using a tape recorder (ask permission before turning it on)
  • Bring someone along for support and to help listen and take notes

Click here for a printable list of questions to ask your physician.

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Pain Treatment

There are many options available to effectively manage pain. The goals of pain management are to:

Your physician will work with you to set goals that are right for you.  The approach used to manage your pain will depend on the cause and type of your pain.

Treatments may include:

At times, treating the cause, as in using drug therapy to treat the underlying cancer, may relieve or decrease your pain and reduce the need for pain medication.

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Pain Medications

Often, medication will be recommended or prescribed for pain relief. Some of these medicines are available at a pharmacy or supermarket without a prescription, while others require a prescription and close follow up.
 
Mild to Moderate Pain

For mild pain your doctor may recommend acetaminophen. Other medications, like NSAIDs, including aspirin and ibuprofen, may be recommended for mild to moderate pain. Although acetaminophen and NSAIDs are valuable pain relievers, there is a point at which they reach an upper limit for proving relief. In addition, your physician may advise against taking them during chemotherapy or radiation therapy.

Moderate to Severe Pain

For moderate to severe pain, your physician may prescribe stronger pain relievers known as opioid analgesics, for example, codeine and morphine, hydrocodone, oxycodone, hydromorphone, oxymorphone, methadone, and fentanyl. These medications may require treatment agreements to ensure they are taken and stored safely and appropriately by the patient. As part of this agreement, your provider may establish very clear guidelines to ensure that you take the opioid as prescribed.

Opioid pain medicines differ in how well they control pain, how much you have to take, how long they last and in the routes by which they can be given. Examples of single-agent opioids are:

  • Oxycodone and fentanyl (Dilaudid®)

Examples of combination medications are:

  • Percocet® (a combination of oxycodone and acetaminophen)
  • Vicodin® (a combination of hydroocodone and acetaminophen)
  • Vicoprofen® (a combination of hydrocodone and ibuprofen)

When used in its pure form, opioid medication doesn't have an upper limit on its ability to relieve pain. The dose can be gradually increased as pain levels rise, therefore, pure opioids can be better used to treat severe pain. Your doctor will be careful to ensure your dose is appropriate to manage your level of pain. Opioids can be taken by mouth (pill or liquid), as a suppository, by injection or absorbed through a patch on the body.

And, as with any treatment for pain, if these medications aren't helping you, your physician may try another treatment until he or she finds the drug that works best for you. Sometimes your physician may also prescribe non-opioids along with these opioids to treat specific types of pain, such as using NSAIDs along with opioids to treat bone pain or anti-seizure medications to treat nerve-related pain problems. Other medications for pain include certain antidepressants, anticonvulsants and corticosteroids. Non-drug treatments are often recommended in addition to medication therapy.

Your physician should reassess your pain at each visit and may opt to prescribe a new medication, alter the dosage or recommend a combination of pain medicines with psychological and rehabilitative therapies. Remember to tell your cancer team all of the medicines you are taking, including over-the-counter medications, supplements and herbal remedies as these can result in serious interactions. Your medical team can help direct you on whether you need to be taking certain medications and how to safely use them.

There may be a concern about the risk for addiction when opioid medications are used. Patients with persistent pain who require prolonged opioid therapy and take these medicines as directed have little to no risk of developing addictive disease. Patients who are at risk for addiction have a:

  • Current or past history of substance abuse
  • Family history of addictive disease (alcohol, illegal drugs or prescription drugs)
  • History of mental illness

It is important to tell your physician if you have any of these risks for developing addictive disease. This does not necessarily mean that using opioids to treat your pain will  not be an option. However, working with an addiction specialist as a new member of your pain team, as well as an increased monitoring plan, may be needed.

If the cost of medication is of concern to you, discuss this with your physician. He or she may assume your medical insurance will cover all the costs. Your physician may be able to prescribe less expensive medications or refer you to sources for financial aid. Click here for information about financial aid from LLS.

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About Non-Drug Options

Increasingly, people living with cancer are turning to non-drug therapies to help alleviate pain and enhance their sense of well being. It is important to discuss with your physician what type(s) of non-drug approaches may be most appropriate for your specific condition. The addition of these therapies often results in better pain relief and fewer side effects.

The following are some of the more common non-drug therapies:

  • Physical therapy and rehabilitation
  • Complementary and Alternative Medicine techniques 
  • Exercise (for example, walking or pool therapy)
  • Hot or cold packs
  • Relaxation and breathing techniques
  • Transcutaneous electrical nerve stimulation (TENS)

There is a growing body of research showing that interventions aimed at influencing emotions, attitudes and behavior can aid in the reduction of chronic pain and associated distress. For example, studies are uncovering a biological link between the brain systems involved in depression and pain regulation. People with pain often suffer from depression, which can increase pain sensitivity and intensity.

It is important to tell your physician if you are using any complementary or alternative treatments. Some natural products can change the way your body reacts to prescribed medications.

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Ten Important Pain-Management Reminders

  1. Pain can be managed. No pain should go untreated or ignored.
  2. Early treatment of pain is more effective than waiting until it is more severe.
  3. Let your physician know if the pain treatment is working or not working. Ask what other options are available for you to try.
  4. Increased pain does not necessarily mean that the cancer is getting worse, but you should always inform your physician if you have pain.
  5. Bring a pain diary or notebook to office visits to show the impact that pain is having on your quality of life.
  6. If your physician is unable to treat your pain so that you have satisfactory relief and can function better, request a referral to a pain specialist. These physicians are trained to manage pain for many different types of illness.
  7. Be persistent in working with your health team to set a pain management plan that reduces suffering and improves function. Hospital social workers and nurses can also be valuable sources of information and are available to listen if you need to talk. There are also patient advocates, sometimes called patient navigators, who can assist you.
  8. Lean on your loved ones for support. Coping with unrelieved pain can be exhausting and can keep you from enjoying friends, relatives and activities.
  9. Pain is invisible; so let others know how you are feeling and coping, and what they can do to help.
  10. Pursue activities that will help to relax and distract you.

Click here to read or download the free LLS Pain Management Fact Sheet.

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last updated on 01/12/09

The Leukemia & Lymphoma Society® (LLS) is the world's largest voluntary health agency dedicated to blood cancer. The LLS mission: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. LLS funds lifesaving blood cancer research around the world and provides free information and support services.
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