- Caring for the Patient With Cancer at Home: A Guide for Patients and Families
- Anxiety, fear, and emotional distress
- Appetite, poor
- Bleeding or low platelet count
- Blood counts, changes in
- Blood in stool
- Blood in urine
- Fluids (lack of) and dehydration
- Grooming and appearance
- Hair loss
- Infection, increased risk
- Leg cramps
- Mouth, bleeding in
- Mouth dryness
- Mouth sores
- Nausea and vomiting
- Scars and wounds
- Shortness of breath
- Skin color changes
- Skin dryness
- Skin (pressure) sores
- Sleep problems
- Stomas (or ostomies)
- Swallowing problems
- Treatment at home
- Tubes and IV lines
- Weight changes
- When death is approaching
- To learn more
When people say they are having pain, it usually means they’re hurting somewhere. But it can also mean that they just can’t get comfortable. They could be feeling bad in general, not in any one place. The feeling of pain can be worse if a person is sad, anxious, or depressed. Some people have a hard time talking about their pain. It’s important that you tell your cancer team about any pain you have.
Even severe pain can be controlled very well by combinations of medicines that can be taken by mouth. Pain medicines work best for chronic (long-term) pain if they are used on a regular schedule before the pain becomes severe. It takes more medicine to control severe pain than milder pain, so it’s best to tell your cancer team right away. You’ll want to treat pain when it first starts and regularly after that. If the cause of the pain can be treated, the need for medicine will slowly decrease or disappear as the cause is treated.
If you have pain from cancer that has spread or other long-term cancer pain, it can exhaust you. This type of chronic or long-term pain can keep you from doing things that you want and need to do. Even with around-the-clock pain medicines, pain often “breaks through” between doses. Breakthrough pain usually calls for a second pain medicine that you can safely take in addition to your regular pain medicine. Don’t be surprised if it takes more than 2 medicines to control your pain. Always tell your cancer team how well your pain is controlled so that medicines and doses can be adjusted as needed.
What to look for
- Pain that doesn’t seem to go away or that goes away and comes back before your next dose of pain medicine is due (This might mean that your medicine plan needs to be changed.)
- Trouble sleeping
- Lack of interest in things you used to enjoy
- New areas of pain or a change in your pain
- Less ability to move around or do things
What the patient can do
- Talk with your cancer team about your pain – where it is, when it began, how long it lasts, what it feels like, what makes it better, what makes it worse, and how it affects your life.
- If the prescribed pain medicines don’t work as expected, let your cancer team know.
- Rate your pain using a pain rating scale, such as 0 = no pain to 10 = the worst pain you can imagine. You can use this scale to explain your pain to others.
- Take your pain medicine exactly as prescribed. (For chronic pain, medicine should be given around the clock on a schedule, rather than only when pain is severe.) Check with your cancer team if this schedule needs to be adjusted.
- As the pain is relieved with medicines, increase your activity level.
- Don’t wait until the pain is severe before taking medicine for breakthrough pain.
- Avoid suddenly stopping any of your pain medicines. Instead, reduce the dose slowly as the pain decreases. Ask your cancer team before you do this, or if you have questions.
- Some people feel nauseated even when they’re taking the right dose of pain medicine. If your pain medicine makes you feel sick, ask your cancer team about changing it or trying something to control the nausea.
- Some pain medicines make you sleepy or dizzy. This often gets better after a few days, but you may need help getting up or walking. Don’t try to drive or do anything dangerous until you are sure of the effects.
- People taking pain medicines are normally given laxatives or stool softeners to prevent constipation, a common side effect.
- Keep track of any other side effects you notice. Discuss them with your cancer team.
- Do not crush or break your pain pills unless you get the OK from your cancer team. If medicines are in time-release form, taking broken pills can be dangerous.
- If pain medicines are not keeping your pain under control, ask your cancer team about other measures. If you keep having trouble, ask to see a pain specialist.
- Keep at least a one-week supply of pain medicines on hand. Most pain medicines can’t be refilled by phone, so you’ll need a written prescription.
What caregivers can do
- Watch the patient for signs of pain. Ask the patient about pain if you notice grimacing, moaning, tension, or reluctance to move around in bed.
- Try warm baths or warm washcloths on painful areas. (Avoid areas where radiation was given.) If this doesn’t help, you can try ice or cool packs. Gentle massage or pressure might also help some types of pain.
- Watch for confusion and dizziness, especially after starting a new medicine or changing the dose. Help the patient walk until you know they can do it alone safely.
- Suggest enjoyable activities to distract the patient.
- Plan activities for when the patient is most comfortable and awake.
- Offer plenty of fluids and food with fiber.
- If the patient seems forgetful, help them track when pain medicines are due to avoid over- or under-dosing.
- Help the patient remember to take stool softeners or laxatives suggested to prevent constipation. (See the section called “Constipation.”)
- If the patient is having trouble taking pills, ask the cancer care team about medicines that come in liquids, lozenges, suppositories, skin patches, or other forms.
- Check with the cancer team before you crush or dissolve pain pills to make them easier to swallow. Some pills can cause a dangerous overdose if broken.
- Talk with the cancer team so that you understand which medicines are for pain and how each is to be used.
- Be sure that the patient has a list of all the medicines they are on, including pain medicines.
- If you help the patient use pain patches, be sure you know how to avoid touching the part with the pain medicine on it and how to dispose of used patches safely.
- Keep pain medicines away from others, especially children and pets.
- When you are caring for someone with pain, plan time for activities you enjoy and take care of yourself. A support group for family members may be helpful.
Call the cancer team if the patient:
- Has new or worse pain
- Can’t take anything by mouth, including the pain medicine
- Doesn’t get pain relief, or if the relief doesn’t last long enough
- Has trouble waking up, or if you have trouble keeping them awake
- Becomes constipated, nauseated, or confused
- Has any questions about how to take the medicines
- Develops a new symptom (for instance, is unable to walk, eat, or pass urine [pee])
Last Medical Review: 06/08/2015
Last Revised: 06/08/2015