alt.support.cancer
- Frequently Asked Questions
Part 2
Table of Contents
How are you coping
with cancer?
Coping with cancer
symptoms; nutrition
Coping with cancer
symptoms; nausea
Coping with cancer
symptoms; vomiting
Coping with cancer
symptoms; constipation
Coping with cancer
symptoms; diarrhea
Coping with cancer
symptoms; loss of appetite
Coping with cancer
symptoms; chewing or swallowing difficulties
What to do about
gritty eyes and blurred vision?
Is there something
that helps with taking yucky tasting medicine?
What is the
recommended treatment for mouth sores?
What other treatments
can relieve mouth sores?
Is capsaicin
effective for mouth sore pain?
Are there any
chemo friendly foods?
Are there any easy
to make meals?
Are there any
swallowing aids?
Why do I smell
odors that others don't?
What can be done about
the odor?
What can be done
about clothing or bedding odor?
What can be done
about room or house odor?
How long does the
odor problem continue after treatment stops?
Coping with the
side effects of radiation
If you are
undergoing radiation therapy watch for fever and infection
Be careful not to
believe these myths about fever
Should I tell my
doctor about a fever?
Will nausea and vomiting
accompany my radiation therapy?
Be careful not to
believe these myths about nausea and sickness
When can nausea
and vomiting be an indication of a serious problem?
What problems are
associated with leg cramps?
What should I do
for leg cramps?
What should I
avoid if I get leg cramps?
When should I call
the doctor about leg cramps?
What should I do
if I’m nauseous?
Can nausea or
vomiting harm my health?
Are there any
group suggestions for dealing with nausea?
What is
cancer-related fatigue
What cancer
treatments are commonly associated with fatigue?
What other factors
contribute to fatigue?
What can I do to
combat fatigue?
How can I do a
personal energy assessment?
Can I manage my
stress to improve CRF?
At what point in
CRF should I call my doctor?
What effect does
poor nutrition have on cancer patients?
What causes anemia
and fatigue in cancer patients?
What is the
prevalence of cancer related anemia?
What are the
symptoms of cancer related anemia?
What is the impact
of cancer related anemia on quality of life.
How is cancer
related anemia diagnosed?
How is cancer
related anemia treated?
What is cancer
related cognitive dysfunction?
What are the
causes of cognitive dysfunction in cancer?
What are the
symptoms of cognitive dysfunction in cancer?
What are the
consequences of cognitive dysfunction in cancer?
How do you manage
cognitive dysfunction in cancer?
Why do cancer
patients have hair loss?
What cancer drugs
usually cause hair loss?
What cancer drugs
sometimes cause hair loss or thinning?
What cancer drugs
usually do not cause hair loss?
What can be done
about chemo caused hair loss?
How should I deal
with hair loss?
How should I care
for new hair?
Are there any good
Internet resources for coping with cancer?
I'm having trouble
reading on the Internet, what can I do?
What organizations
help children with cancer?
How can parents
help children cope with cancer?
What about school
issues for a child with cancer?
How should one
discipline the child with cancer?
Will positive
thinking improve the outcome of dealing with an incurable disease?
What affect will a
positive attitude have?
What are the
different types of clinical trials?
Should I be in a
clinical trial?
When would my
doctor recommend a clinical trial?
How do I find
clinical trials?
What should I know
before deciding on a clinical trial?
Does the result of
a study impact the chance it will be published?
Before
participating in a clinical trial
Tips for asking
your doctor about trials
How do you know
whether a treatment works?
What should I do
if my doctor is not doing enough for me?
There are no
available treatment options left, what should I do?
Do cancer patients
ever get suicidal thoughts?
Suicide has
crossed my mind, what should I do?
You've survived
cancer: now what?
What do I need to
know about life after survival?
What can be done
about cancer related infertility?
What is palliative
care for children?
What organizations
provide home and hospice care?
Are there
guidelines for estimating length of survival in palliative patients?
Cancer diagnosis
with a poor prognosis
Cancer
circumstances with a very poor prognosis
Illnesses showing
a momentum of functional decline
Does pain have an
effect on survival?
Do opioids have an
effect on survival?
What is the
Karnofsky performance scale?
Where can I find more
information about estimating length of survival in palliative patients?
What are the
rights of the dying?
What are the
rights of a person dying at home?
What are the
physicians practice guidelines for supportive care?
Treating symptoms
at the end of life
Talking about
cancer and death
What do I say to
my small children about me dying?
How do I explain
chronic illness to a child?
How can I better help
my children with grief?
How can I help my
children with grief, death, and funerals?
How can we help
children that have lost a classmate to cancer?
How to say goodbye
to loved ones
How to die as well
as you were born
Should you develop
a crisis management plan?
How to take care
of your family and friends
How to take care
of your estate
What do I do with
all the bills (utilities, insurance, taxes etc.)?
Should I
prearrange the funeral?
How do I get my
affairs in order?
How can comfort of
terminal patients be improved?
What are the
symptoms of end-of-life?
Disclaimer: this FAQ is provided for educational purposes only. It cannot be used for diagnosing or treating a disease. If you have or suspect you may have cancer, you should consult your doctor. The external links in this FAQ are provided for the convenience of alt.support.cancer newsgroup visitors. The alt.support.cancer newsgroup has no interest in, responsibility for, or control over the linked sites and no responsibility is accepted for information on any linked page, please read the linked provider's own disclaimer where appropriate. The alt.support.cancer newsgroup makes no promises or warranties of any kind, express or implied, including those of merchantability or fitness for a particular purpose, as to the content of any linked site. In no event shall the alt.support.cancer newsgroup be liable for any damages resulting from use of these links.
Continued from Part 1
When should I call my doctor? |
If you feel that, something is wrong or you experience any of the following problems:
· Increased shortness of breath with minimal exertion
· Uncontrolled pain
· Inability to control side effects from treatments (such as nausea, vomiting, diarrhea, or loss of appetite)
· Uncontrollable anxiety or nervousness
· Ongoing depression.
· Jaundice
How are you coping with cancer? |
Check Your Stress Level and Coping Skills at http://www.cancer.org/docroot/MBC/MBC_5.asp
Coping with cancer symptoms; nutrition |
Well-nourished patients may experience fewer side effects than poorly nourished ones, and are better able to maintain and rebuild their bodies' natural defenses. During this time, you may have to face new challenges in your eating pattern, and explore new ways to get the calories, protein, and nutrients that you need for optimal nutrition.
Eat a Variety of Foods
Unless instructed otherwise, eat a low-fat diet with a focus on additive-free fruits, vegetables, grains, and small quantities of good-quality protein. Examples of a good-quality protein include nonfat dairy foods, eggs, legumes, soy, lean chicken, and fish. Do not eliminate one or more of these nutritional building blocks without consulting with a nutritionist to develop a personalized eating plan.
What about Caffeine, Sugar, Sodium and Alcohol?
In general you will want to limit your intake, but there may be exceptions. If you have lost a lot of weight, just getting enough calories to prevent weight loss may be a goal, and hence additional fat and some sugar can be good sources of calories.
Stay Hydrated
Drink as much as you can during the day. Dehydration can be a problem with certain drugs and when nausea or diarrhea occurs. Bring a water bottle with you when you leave the house. If you are losing weight or need to gain weight, choose higher-calorie liquids (in addition to water) such as fruit nectars, juices, or your own fruit Popsicles made in ice cube trays.
Coping with cancer symptoms; nausea |
Nausea is a common side effect of chemotherapy and radiation therapy. It may be due to the treatment or the cancer itself. If you experience it after surgery, be sure to discuss this with your doctor or medical team. Here are some practical tips to help with nausea:
· Try dry Saltine-style crackers, toast, natural potato chips, and pretzels.
· Keep crackers at your bedside, if nausea is a problem in the morning or after a nap.
· Eat regular meals. Having some food in your stomach may help you feel better.
· Try foods that are easy on your stomach, such as:
Cream of Wheat, rice, or oatmeal
Boiled potatoes or noodles
Low-fat protein sources such as skinned chicken or tofu that is baked or broiled, not fried
Canned peaches or other soft, bland fruits and vegetables
Clear liquids such as apple and cranberry juice, low-salt broth, and carbonated drinks without caffeine
Teas such as ginger and peppermint, served lukewarm or cold.
· Eat small, frequent meals every few hours.
· Slowly drink or sip liquids throughout the day. A straw may help.
· Stay away from odors. Have someone else cook if possible. Eat in the dining room or in a room other than the kitchen.
· Try colder foods and main-dish salads. Avoid hot foods and hot liquids.
· Track your nausea by taking note of any particular food or events that trigger it. See if there is a pattern, and if so, try to change that pattern.
· Inform your nurse or doctor about your nausea and ask about medications to control this side effect.
· Stay quiet after meals. Try to rest while sitting up for about an hour - you can watch TV, read a magazine, talk with a loved one, or enjoy the company of your pet.
· Avoid fried, greasy, and rich foods.
· Don't force yourself to eat your favorite foods when you feel nauseated, as you may develop a dislike for these foods.
Coping with cancer symptoms; vomiting |
Vomiting may follow nausea and be brought on by treatment or food odors. If vomiting is severe or lasts for more than a day or two, contact your doctor. Visualization and relaxation exercises may help.
· Do not eat or drink anything until you have the vomiting under control.
· Try tiny amounts of clear liquids such as water or bouillon, apple or cranberry juice, fruit ices without fruit pieces, ginger ale or 7-Up, plain gelatin desserts, Popsicles, sports drinks such as Gatorade, vegetable broth, and teas.
· Begin with 1 teaspoon every 10 minutes, gradually increasing the amount to 1 tablespoon every 20 minutes, and then try 2 tablespoons every 30 minutes or as tolerated.
· Once these liquids are tolerated, try a softer diet with bland foods such as mashed potatoes, rice, pureed fruits, smoothies, fruit nectars, yogurts, and cereals with milk or soy if you have problems with digesting milk.
· Drink and eat more potassium and magnesium-rich foods when feeling better. Potassium-rich foods include bananas, potatoes, orange juice, tomato, and apricots.
Coping with cancer symptoms; constipation |
Chemotherapy, certain medications, or lack of exercise may cause constipation. Adding more fiber to your diet may help. Here are some easy ways to add fiber to your diet and to help constipation:
· Try including kidney beans, chickpeas, lentils, fresh fruit and vegetables, and dried fruit in your diet.
· Start your day eating bran cereals or shredded wheat, or foods made with whole grains such as bulgur or wheat berries.
· Aim for a cereal with at least 5 grams of fiber per serving.
· Try to have some fiber included in each of your meals.
· Add unprocessed wheat bran to hot cereals and yogurt.
· If you're not used to eating a lot of fiber, slowly increase your intake, as you may initially have increased flatulence/gas until your body gets used to more fiber in the diet.
· You can also reduce flatulence from eating beans by soaking beans first in water and discarding the water.
· Drink plenty of liquids. A high-fiber diet requires plenty of fluids to work effectively.
· Reduce your caffeine intake, as caffeine may promote constipation by causing you to lose fluids.
· Drink a hot, noncaffeinated beverage such as lemon water in the morning upon awakening.
· Add exercise to your daily routine. Check with your doctor first.
Coping with cancer symptoms; diarrhea |
Diarrhea may be due to many causes. You may get it because of chemotherapy, radiation therapy to the lower abdomen, malabsorption, or use of antibiotics. It can also develop because of intolerance to milk or difficulty in absorbing fats. If you experience weight loss from diarrhea, it may be due to dehydration, which means that your body does not have enough water. Speak with your health professional to try to determine the cause of the weight loss and obtain the proper treatment.
If you have diarrhea:
Drink plenty of room-temperature liquids to help prevent dehydration. These might include fruit drinks, Gatorade, ginger ale, peach or apricot nectar, water, or weak teas. Limit caffeinated beverages.
Allow carbonated beverages to lose their fizz or stir them before you drink them.
Consume more potassium-rich foods such as orange juice, tomato juice, bananas, and potatoes.
Try the BRAT diet:
· Bananas
· Rice
· Applesauce
· Tea and toast.
Try frequent, small meals.
Avoid greasy, spicy, or high-fiber foods.
Try breads made from refined flour without seeds or nuts.
Avoid raw vegetables and the skins, seeds, and stringy fibers of unpeeled fruits. Resume your consumption of higher fiber foods, fruits, and vegetables once the diarrhea stops (check with your dietitian and doctor first).
Have spicy or highly seasoned foods only as tolerated.
If you are lactose intolerant, use dairy products sparingly. Instead of regular milk, try Lactaid, yogurt, or soymilk.
Coping with cancer symptoms; loss of appetite |
Many problems such as pain, nausea, vomiting, diarrhea, or a sore or dry mouth may make eating difficult and cause you to lose interest in eating. Depression, stress, and anxiety may also cause loss of appetite. If your appetite is no longer motivating you to eat, here are some suggestions to help ensure that you are getting the nutrition that you need.
· Eat by the clock rather than by your hunger mechanism. Eat because it is 9am, noon, 3pm, 6pm, or whatever your daily pattern becomes.
· Snack between meals. Choose high-calorie puddings, shakes, high-calorie and protein drink supplements, sandwiches, avocados, and nuts.
· Plan for special circumstances. If you have to miss or delay a meal for a test or therapy, bring a snack of nuts, dried fruit, or cheese and crackers. Ask your dietitian if these foods fit into your medical diet.
· Choose high-calorie foods at this time, such as avocados, nuts, puddings, cream soups, cooked cereals, and vegetables with added butter or margarine. Use extra olive oil in salads.
· Plan your daily menu in advance. Make a shopping list of your favorite foods and beverages and have the food available. You may want to portion out snacks and keep them in the refrigerator in Ziploc bags so that they are readily available.
· Request help in preparing your meals. A friend or relative is often happy to help out by preparing food for you. Some grocery stores have shopping services that may be accessed through your computer. You are very important - ask for help when you need it, and ideally before you anticipate that you will need it.
· Fix several portions of your favorite foods and freeze them. This can make it easier to decide what to eat when your appetite is poor or you do not feel like cooking.
· Make food visually appealing. Eye appeal is often the first step in eating. Attractive colors and garnishes such as parsley, lemon wedges, olives, and cherry tomatoes help to enliven the appetite.
· Appeal to your sense of smell. Tap into the sense of wellbeing that smells can stimulate, such as the smell of fresh bread baking. If, however, you find that you are overwhelmed by smells at this time, stay away from the kitchen, and have someone else prepare the cooking.
· Make your mealtimes pleasant. Your mealtime atmosphere is important to encourage eating. Set the table, perhaps adding candles, as well as wine, if permitted. Whenever possible, eat with family or friends.
· If you are finding it difficult to cook due to the symptoms of chemotherapy, consider calling organizations such as Project Open Hand at (415) 447-2300 or Meals on Wheels at (415) 920-1111 that deliver meals directly to your residence.
· If you are having appetite or eating problems, try sipping fortified nutritional drinks as a supplement to your meals.
Coping with cancer symptoms; chewing or swallowing difficulties |
Soreness and tenderness in the mouth and throat are common. If your swallowing difficulties are minor, the following suggestions may help. You may need to work with a dietitian or swallowing therapist or consider alternative methods of feeding if you have severe problems.
· Eat frequent small meals and snacks to ensure that you are getting enough calories.
· Cut foods into bite-sized pieces or grind them so that less chewing is required.
· Choose soft foods or foods that can be cooked until tender such as mashed potatoes, sweet potatoes, winter squashes (butternut and acorn), carrots, applesauce, ground beef or turkey, and tofu.
· Consume liquid supplements such as Ensure Plus, Boost Plus, or shakes that can be made in your blender.
· Consider using a blender to puree the foods your family is eating. When adding liquid to process the foods, remember to add high-calorie liquids - such as gravy, milk, cream, or broth - instead of water.
· Drink generous amounts of nutritious liquids with meals.
· Be adventurous. Try new sauces, gravies, or different oils on foods to make swallowing easier.
· Try apple, cranberry, or grape juices or fruit nectars if you are sensitive to citrus juices.
· Keep some baby food on hand for something quick and tasty.
· Try drinking liquids through a straw or as recommended by your swallowing therapist.
· Try drinking using a toddler's sippy cup without the valve; it doesn't come out too fast and no spilling.
· Chewing problems http://www.nonchewcookbook.com/recipe.html The Non Chew Cookbook was written for people suffering from chewing, swallowing and dry mouth disorders. (Commercial website)
What to do about gritty eyes and blurred vision? |
If this happens, it is important that you tell your doctor. He can prescribe soothing eye drops.
Is there something that helps with taking yucky tasting medicine? |
Just before drinking some of the bad tasting liquid, take a swig of cold Coke in your mouth, swish it around, and spit it out. It deadens the taste buds for a few seconds.
What causes mouth sores? |
This condition can affect as many as 80% of patients undergoing chemotherapy, radiation, or blood stem cell transplants.
High-dose chemotherapy kills not only cancer cells, as it's meant to, but other fast-growing cells as well, such as those lining the inside of the mouth and throat. That can leave patients with extremely painful open sores in those areas, which prevent them from eating, drinking, or talking for a week or more after such treatments. The mouth and throat sores are also an open avenue for serious infection, which can be life threatening to patients whose immune systems may still be recovering from the effects of chemotherapy, and the pain from the sores can be so intense that it requires the use of narcotic pain killers.
What is the recommended treatment for mouth sores? |
Miracle mouthwash is a combination of benedryl, lidocaine, and milk of magnesia. Ask your pharmacist to mix some for you.
What other treatments can relieve mouth sores? |
· Bite open a 400IU capsule of vitamin E and swish it around your mouth before swallowing.
· Take supplements of vitamin C to help with tissue healing.
· Apply tea tree oil directly to the sores (acts as an antibiotic).
· Sucking ice chips can soothe a sore throat and help numb mouth sores.
· Keep your mouth very clean. Even if it hurts to brush your teeth, as bacteria can enter your body through the sores.
"I also used the old standby, which is 1/2 teaspoon salt and 1/2 teaspoon baking soda in a large glass of warm water followed by a plain water rinse. I guess it helps neutralize acids in the mouth and gives a little relief" Paul
For more information see Mouth Sores at the ACS web site http://www.cancer.org/docroot/MBC/content/MBC_2_3x_Mouth_Sores.asp
Is capsaicin effective for mouth sore pain? |
Yes! However, it has not been approved as a treatment by the FDA. The capsaicin desensitizes the taste neurons. One way to make effective use of capsaicin is to use it in products cooked with sugar. The sugar eliminates the burning sensation normally experienced with eating hot pepper products. The consumption of cayenne, and other peppers, is considered safe in moderate amounts, however, it can cause stomach upset or diarrhea in some cases.
Caution: Capsaicin, is believed to have blood-thinning properties (natural blood thinner), a minor nuisance for some of us, but for some who have blood problems or already on blood thinners for other reasons, may need to check with their doctors before consuming capsaicin.
Here is a recipe for taffy that is intended for treating mouth sores:
Hot Pepper Taffy Pull (adapted from the Joy of Cooking Cookbook)
- 1-cup sugar
- 3/4-cup light corn syrup
- 2/3-cup water
- 1 TBS cornstarch
- 2 TBS butter or margarine
- 1 tsp. salt
- 2 tsp. vanilla
- 1/2 tsp. cayenne pepper
In a 2-qt saucepan, add sugar, corn syrup, water, cornstarch, butter and salt. Over medium heat, stir constantly until it becomes a hard ball (256F). Remove from heat and stir in vanilla and pepper. When cool enough to handle, butter hands and pull until satiny and stiff. Pull into long strips, cut into 1" pieces, and wrap with wax paper.
Hot pepper taffy can be purchased ready-made.
Are there any chemo friendly foods? |
Here is a chemo compatible potato soup from Barbara: http://groups.google.com/groups?selm=Pine.BSF.4.02A.9901181034250.8440-100000%40schultz.io.com&output=gplain
Are there any easy to make meals? |
Here is a suggestion from Rian Wanadoo, NL. I have a great recipe for instant Jewish penicillin for the starved:
- 1 jar of chicken stock (the kind with a piece of chicken in it and you have to dilute it twice). half pound of ready to cook soup veggies.
- Cook the veggies, do stock and veggies in food processor, mince.
- Put in pan, add 3-4 oz of alphabet or angel hair noodles. Cook 10 minutes.
- Very thick, low sodium, delicious, easy to eat.
- Put in mugs freeze open. Take out of mugs, store in freezer plastic.
- Take out one, microwave, presto, 150 instant calories, even traces of protein and veggies.
Are there any swallowing aids? |
Here is a suggestion from Paul: "I used viscous lidocaine 2% to numb my mouth before eating. It only works for about 5 to 10 minutes, but it helped me get some liquid supplements down. I also used the Maalox, Viscous Lidocaine and Benadryl elixir concoction as a swallowing aid. Without it, I absolutely could not swallow pills."
What can I do for dry mouth? |
Ask your doctor about Evoxac (Cevimeline) http://www.rxlist.com/cgi/generic2/cevimeline_ids.htm
In addition, some of the Lupus or Sjorgen's patients have tried Savlia Orthana http://www.labpages.com/std_home/page0109.html it is available in spray and lozenges
Over the counter, there is Biotene (R), which makes four products for dry mouth: toothpaste, mouthwash, gum, and oral gel. It's available worldwide. For product information see: http://www.laclede.com/dry_mouth.html (commercial web site).
Why do I smell odors that others don't? |
It is due to the chemo or pain medicine, which causes an altered sense of smell.
What can be done about the odor? |
If you can smell yourself, or your urine, try these tips:
· Regular bathing and liberal use of body powder kept the daytime body odor to a minimum.
· Perhaps a dab of something nice-smelling near or on the nose, tricks the nose. Try a flavored lipgloss, they're cheap, non-toxic and come in multi flavors.
· If I was desperate I'd put a bit of Vicks rub up inside/near my nostril. Not everyone likes the smell. It also has an added benefit, if your immune system is low from the chemo, other people often think the person with the Vicks has a cold and they stay away.
· Try scent elimination products for hunters. Shower and shampoo using scent eliminating soap/shampoo. http://www.google.com/search?cat=&q=scent+elimination
What can be done about clothing or bedding odor? |
· Try scent elimination products for hunters, wash the clothing and bedding in scent eliminating detergent. http://www.google.com/search?cat=&q=scent+elimination
· Change the clothing and bedding frequently.
What can be done about room or house odor? |
Use lots of Febreze in the house and use a nice smelling powder in the crevices.
How long does the odor problem continue after treatment stops? |
The effects of chemo on altered sense of smell may last from a few days to as many as two months after completion of treatment.
Coping with the side effects of radiation |
If you are undergoing cancer treatment, you may not feel well. Both the disease and treatment (including surgery, radiation, and chemotherapy) can cause a variety of symptoms including nausea, vomiting, fever, infections, and fatigue. Unfortunately, while some of these side effects are simply unpleasant, others can pose significant risks to your health and healing process.
If you or a loved one is experiencing any of the symptoms listed above, there are some general guidelines you should keep in mind. The best course of action for anyone with cancer is to learn about potential side effects before they occur, so that you know what to do, when and if they happen.
If you are undergoing radiation therapy watch for fever and infection |
Radiation and chemotherapy are very powerful forms of cancer treatment, and can produce strong side effects. One of the most dangerous of these side effects is infection.
Common signs of infection are swelling, redness, pain, or fever (especially sustained fever). High fever can itself be dangerous, so it is very important to deal with fever as soon as it occurs and monitor it so that it does not get too high.
It is important to remember that the risk of infection and fever do not go away as soon as treatment ends. The amount of time a patient is at risk for infection varies greatly. Depending on each person's diagnosis and treatment options, it can be as long as two months. It is important for you to ask your doctor or health care team about this.
Why does fever occur? |
Because they are powerful, both radiation and chemotherapy can greatly reduce the number of white blood cells in your body. These white blood cells are the body's natural defense against infection. Having a low white cell count because of treatment can leave a person at high risk for infection.
A fever can be a sign that your body has an infection. In addition, fevers are not good for your body. They can be exhausting, cause chills, headaches, and other problems. Hence, it is very important to reduce fever (and the infection that is causing it) as soon as possible in order to monitor progress. It is also important to provide reports on your condition to your physician or health care team.
The most common course of action will be to treat the fever and the cause of the infection at the same time, with anti-fever drugs, antibiotics, and medicine to help replenish your body's white blood cells. As with any serious side effect, the key to dealing with fever and infection is to watch for warning signs, communicate with your doctor, and take action quickly.
Be careful not to believe these myths about fever |
"Fevers come and go - it's best just to let them run their course." False
Fevers are always an indication that something is wrong, and should be reported and treated. If fevers get too high, they can lead to dehydration and cause seizures. When you are undergoing radiation or chemotherapy, fevers often indicate infection, which is serious and requires medical attention.
"Fevers help burn up whatever is wrong." False
High fevers do not destroy the bacteria that cause infection. This is why your doctor or health care team will treat both the fever and the possible infection. If your white blood cell count is low, your body will not be able to fight off the infection on its own.
Should I tell my doctor about a fever? |
Fever is one of the warning signs of infection. If a fever develops, don't wait to see what happens. Tell your doctor or health care team, and follow their advice.
Will nausea and vomiting accompany my radiation therapy? |
Many people know that nausea and vomiting are common side effects of radiation and chemotherapy. Depending on your type of treatment, you may experience them all at once, separately, at different times throughout your illness, or not at all.
However, there is good news. In the last few years, health professionals have learned a great deal about controlling nausea and other side effects.
There are also things you can do to help limit your nausea:
· Get plenty of rest. Some patients report that resting helps them overcome feelings of nausea. Some anti-nausea drugs, designed to make you sleepy, help you rest through a period of nausea.
· Relax and try to distract yourself. Watching TV, listening to the radio, or any other activity that relaxes you will help you feel less affected by symptoms.
· Wear loose-fitting clothing. Tight sweaters, shirts, or dresses, especially around the waist or neck, can aggravate an upset stomach.
· Rinse your mouth out often, and avoid strong foods or odors. Rinsing can help eliminate a bad taste in your mouth, and you should not eat strong or spicy foods if you think you may experience nausea.
· Try taking small sips of fluids or sucking on ice chips an hour or so after being sick. This helps settle your stomach.
· Crackers or toast help. Because they are mild, these types of foods can put something back into your stomach, usually without causing upset.
· Have another person stay with you. Talking to someone can be a great source of help and encouragement.
Be careful not to believe these myths about nausea and sickness |
"All radiation and chemotherapy treatments make you feel sick." False
Each person reacts differently to cancer therapy. Some people experience nausea and vomiting, some do not. Also, symptoms can come and go throughout treatment.
"There are no medicines to get rid of nausea and sickness caused by radiation and chemotherapy. The ones that are available cause side effects." False
Medicines are available to help, many that have no side effects. These medicines are called antiemetics. Ask your doctor about them.
"Getting sick means the cancer treatment is working." False
Whether the treatment makes you sick or nauseated is not an indication of its effectiveness. Again, each person reacts differently to treatment. Some do not get ill at all.
When can nausea and vomiting be an indication of a serious problem? |
Nausea and vomiting can be an indication of a serious problem, especially if they interfere with your ability to take oral medication, or cause bleeding or pain. Do not be afraid to discuss this with your doctor - there is no cause for embarrassment.
What causes leg cramps? |
Leg cramps or spasms are a painful tightening of the muscles in the leg. Staying in bed for long periods of time sometimes causes muscles in the legs or feet to cramp. Other causes of cramping are pressure on the calf muscles or on the back of the knee, too much phosphorus, too little calcium, or too little potassium in the body.
What problems are associated with leg cramps? |
· Pain and discomfort in a leg or foot accompanied by tightness and stiffness
· Difficulty moving a foot or pain when moving a foot or leg
What should I do for leg cramps? |
· Change positions frequently
· If you are bedridden, use a bed cradle (a support at the end of the bed that holds up the blanket) to protect your legs and feet from the weight of bedclothes
· Move your legs in bed by bending and straightening them 10 times, twice a day, or as many times as you can
· Use muscle relaxants, if prescribed by the doctor
· Apply heat to legs in spasm, if allowed by the doctor
· Massage your leg, if allowed by the doctor
· Keep your legs warm
· Contract the opposing muscle group, or try pointing the toes or walking around
· Follow the doctor's instructions for correcting any imbalances in calcium, potassium, or phosphorus
What should I avoid if I get leg cramps? |
· Getting too tired or tense
· Sitting or lying in a way that puts pressure on the back of the knees or on the calf muscles
· Staying in one position for too long
When should I call the doctor about leg cramps? |
Call the doctor about any of the following symptoms:
· Cramping that is not relieved by heat, massage, or vigorously contracting the opposing muscle group
· Cramping that continues for more than 6 to 8 hours
· Red, swollen, or hot foot or leg
Nausea |
Nausea and vomiting are less common side effects of chemotherapy today, thanks to newer drugs that don't cause this problem. In addition, when these side effects do occur, they are much less severe. Talk to your doctor about these powerful anti-nausea drugs. Different drugs work for different people, and you may need more than one drug to get relief. Be sure to tell your doctor or nurse if you feel very nauseated or have vomited for more than a day, or if your vomiting is so bad that you cannot keep liquids down. You could become dehydrated.
What should I do if I’m nauseous? |
· Eat small, frequent meals throughout the day instead of three large meals. (Nausea is often worse if your stomach is empty).
· Eat slowly, chew your food completely and try to stay relaxed.
· Eat foods that are cold or are at room temperature. (The smell of hot or warm foods may make you more nauseous).
· Avoid eating foods that are hard to digest such as spicy foods or foods that are high in fat (including rich and creamy sauces).
· Rest after eating. If you need to lie down, keep your head elevated about 12 inches above your feet.
· If you feel nauseous when you first wake up, keep a box of crackers on your night stand and eat a few before getting out of bed. Or, try eating a high-protein snack such as lean meat or cheese before going to bed (protein takes longer to digest).
· Instead of drinking beverages with your meals, drink beverages and other fluids between meals.
· Drink six to eight 8-ounce glasses of fluid (preferably water) per day to prevent dehydration. Choose cold beverages such as flat soda or flavored drink mixes. You can also choose ice cubes, popsicles or gelatin.
· Try to eat more food at a time of the day when you feel less nauseous.
· If you have been feeling nauseous, be sure to tell your health care provider before each treatment session.
· Contact your health care provider if your nausea causes vomiting that is persistent or severe (if you can't keep fluids or foods down on a continual basis). Persistent vomiting can cause dehydration and should be treated immediately.
· If your health care provider prescribes an anti-nausea medication for you, take it 1/2 hour to 1 hour before eating.
Can nausea or vomiting harm my health? |
Persistent vomiting causes the body to lose large amounts of water and nutrients. If you are vomiting more than three times a day and you are not drinking enough fluids, you could become dehydrated. Dehydration is the loss of water from body tissues and it disturbs the balance of essential substances in your body. Dehydration can cause serious complications if it is not treated.
Notify your health care provider if you are vomiting persistently and experience any of these signs of dehydration:
· Dark urine
· Small amount of urine
· Rapid heart rate
· Headaches
· Flushed, dry skin
· Coated tongue
· Irritability and confusion
Persistent vomiting may reduce the effectiveness of medications if they have not yet been absorbed into your bloodstream. If persistent vomiting continues, your radiation treatments may be stopped temporarily. You may also be given fluids intravenously (through an IV in your vein) to help your body regain the nutrients it needs for energy.
Are there any group suggestions for dealing with nausea? |
See Karen's ginger, peppermint, or dry crackers suggestion at http://groups.google.com/groups?selm=33303adb.4729938%40news.shirenet.com&output=gplain
What is cancer-related fatigue |
Fatigue is often confused with tiredness. Tiredness happens to everyone -- it's a feeling you expect after certain activities or at the end of the day. Usually, you know why you are tired and a good night's sleep solves the problem.
Fatigue is a daily lack of energy; unusual or excessive whole-body tiredness not relieved by sleep. It can be acute (lasting a month or less) or chronic (lasting from one month to six months or longer). Fatigue can prevent you from functioning normally and impacts your quality of life.
Cancer-related fatigue (CRF) is one of the most common side effects of cancer and its treatment. It is not predictable by tumor type, treatment or stage of illness. Usually, it comes on suddenly, does not result from activity or exertion, and is not relieved by rest or sleep. It is often described as "paralyzing." It may continue even after treatment is complete.
What causes CRF? |
The exact reason for CRF is unknown. CRF may be related to the disease process or its treatments.
What cancer treatments are commonly associated with fatigue? |
Chemotherapy. Any chemotherapy drug may cause fatigue. Patients frequently experience fatigue after several weeks of chemotherapy, but this varies among patients. In some patients, fatigue lasts a few days, while others say the problem persists throughout the course of treatment and even after the treatment is complete.
Radiation therapy. Radiation therapy can cause cumulative fatigue (fatigue that increases over time). This can occur regardless of the treatment site. Fatigue usually lasts from three to four weeks after treatment stops but can continue for up to two to three months.
Bone marrow transplant. This aggressive form of treatment can cause fatigue that lasts up to one year.
Biological therapy. Interferons and interleukins are cytokines, natural cell proteins that are normally released by white blood cells in response to infection. In high amounts, these cytokines can be toxic and lead to persistent fatigue.
Combination therapy. More than one cancer treatment at the same time or one after the other also increases the chances of developing fatigue.
What other factors contribute to fatigue? |
Tumor-induced "hypermetabolic" state. Tumor cells compete for nutrients, often at the expense of normal cells. In addition to fatigue, weight loss and decreased appetite are common effects.
Decreased nutrition from the side effects of treatments (such as nausea, vomiting, mouth sores, taste changes, heartburn, or diarrhea) can cause fatigue.
Cancer treatments can cause reduced blood cell counts that can lead to anemia, a blood disorder that occurs when there is not enough hemoglobin, a substance in red blood cells that enables the blood to transport oxygen through the body. When the blood cannot transport enough oxygen to the body, fatigue can result.
If the thyroid gland is under-active, metabolism may slow down so that the body does not burn food fast enough to provide adequate energy. This is a common condition in general, but may also happen after radiation therapy to the lymph nodes in the neck.
Medicines used to treat side effects such as nausea, pain, depression, anxiety, and seizures can cause fatigue.
Chronic, severe pain increases fatigue.
Stress can worsen feelings of fatigue. Stress can result from dealing with the disease and its "unknowns," as well as from worrying about daily accomplishments or trying to meet the expectations of others. Fatigue often results when patients try to maintain their normal daily routines and activities during treatment. Modifying your activities can help conserve energy.
Depression and fatigue often go hand-in-hand, but it may not be clear which started first. One way to sort this out is to try to understand your depressed feelings and how they affect your life. If you are depressed all the time, were depressed before your cancer diagnosis, or are preoccupied with feeling worthless and useless, you may need treatment for depression.
What can I do to combat fatigue? |
The best way to combat fatigue is to treat the underlying medical cause. Unfortunately, the exact cause is often unknown or there may be multiple causes.
Some medical treatments may help improve fatigue caused by hypothyroidism or anemia. Causes of fatigue must be managed on an individual basis.
How can I do a personal energy assessment? |
Evaluate your level of energy. Think of your personal energy stores as a "bank." Deposits and withdrawals have to be made over the course of the day or the week to balance energy conservation, restoration and expenditure.
Keep a diary for one week to identify the time of day when you are either most fatigued or have the most energy. Note what you think may be contributing factors.
Be alert to your personal warning signs of fatigue. Fatigue warning signs may include tired eyes; tired legs; whole-body tiredness; stiff shoulders; decreased energy or a lack of energy; inability to concentrate; weakness or malaise; boredom or lack of motivation; sleepiness; increased irritability; and nervousness, anxiety or impatience.
How can I conserve energy? |
· Follow these tips to conserve energy:
· Plan ahead and organize your work.
· Change where you store items to reduce trips or reaching.
· Delegate tasks when possible.
· Combine activities and simplify details.
· Schedule rest.
· Balance periods of rest and work.
· Rest before you become fatigued -- frequent, short rests are beneficial.
· Pace yourself.
· A moderate pace is better than rushing through activities.
· Reduce sudden or prolonged strains.
· Alternate sitting and standing.
· Practice proper body mechanics.
· When sitting, use a chair with good back support. Sit up with your back straight and your shoulders back.
· Adjust the level of your work -- work without bending over.
· When bending to lift something, bend your knees and use your leg muscles to lift, not your back. Do not bend forward at the waist with your knees straight.
· Carry several small loads instead of one large one, or use a cart.
· Limit work that requires reaching over your head.
· Use long-handled tools.
· Store items lower.
· Limit work that increases muscle tension (isometric work).
· Breathe evenly; do not hold your breath.
· Wear comfortable clothes to allow free easy breathing.
· Identify effects of your environment.
· Avoid extremes of temperature.
· Eliminate smoke or harmful fumes.
· Avoid long, hot showers or baths.
· Prioritize your activities.
· Decide what activities are important to you, and what could be delegated.
· Use your energy on important tasks.
How can nutrition affect CRF? |
Cancer-Related Fatigue (CRF) is often made worse if you are not eating enough or if you are not eating the right foods. Maintaining good nutrition can help you feel better and have more energy.
Try these tips:
· Meet your basic calorie needs. The estimated calorie needs for someone with cancer is 15 calories per pound of weight if your weight has been stable. Add 500 calories per day if you have lost weight. Example: A person who weighs 150 pounds needs about 2,250 calories per day to maintain his or her weight.
· Get plenty of protein. Protein rebuilds and repairs damaged (and normally aging) body tissue. The estimated protein needs are 0.5 to 0.6 grams of protein per pound of body weight. Example: A 150-pound person needs 75 to 90 grams of protein per day. The best sources of protein include foods from the dairy group (8 ounces milk = 8 grams protein) and meats (meat, fish or poultry = 7 grams of protein per ounce).
· Drink plenty of fluids. A minimum of eight cups of fluid per day will prevent dehydration. (That's 64 ounces, two quarts or one half-gallon). Fluids can include juice, milk, broth, milkshakes, gelatin and other beverages. Of course, water is fine, too. Beverages containing caffeine do NOT count. Keep in mind that you'll need more fluids if you have treatment side effects such as vomiting or diarrhea.
· Make sure you are getting enough vitamins. Take a vitamin supplement if you are not sure you are getting enough nutrients. A recommended supplement would be a multivitamin that provides at least 100 percent of the recommended daily allowances (RDA) for most nutrients. Note: Vitamin supplements do not provide calories, which are essential for energy production. So vitamins cannot substitute for adequate food intake.
· Make an appointment with a dietitian. A registered dietitian can provide suggestions to work around any eating problems that may be interfering with proper nutrition (such as early feeling of fullness, swallowing difficulty, or taste changes). A dietitian can also suggest ways to maximize calories and include proteins in smaller amounts of food (such as powdered milk, instant breakfast drinks and other commercial supplements or food additives).
Will exercise lessen CRF? |
Decreased physical activity, which may be the result of illness or of treatment, can lead to tiredness and lack of energy. Scientists have found that even healthy athletes forced to spend extended periods in bed or sitting in chairs develop feelings of anxiety, depression, weakness, fatigue, and nausea.
Regular, moderate exercise can decrease these feelings, help you stay active and increase your energy. Even during cancer therapy, it is often possible to continue exercising. Here are some guidelines to keep in mind.
· Check with your health-care provider before beginning an exercise program.
· A good exercise program starts slowly, allowing your body time to adjust.
· Keep a regular exercise schedule. Exercise at least three times a week. Even more dangerous than not exercising at all is exercising only occasionally.
· The right kind of exercise never makes you feel sore, stiff or exhausted. If you experience soreness, stiffness, exhaustion or feel out of breath as a result of your exercise, you are overdoing it.
· Most exercises are safe, as long as you exercise with caution and you don't overdo it. The safest and most productive activities are swimming, brisk walking, indoor stationary cycling and low impact aerobics (taught by a certified instructor). These activities carry little risk of injury and benefit your entire body.
Can I manage my stress to improve CRF? |
Managing stress can play an important role in combating fatigue. Here are some suggestions that may help.
· Adjust your expectations. For example, if you have a list of 10 things you want to accomplish today, pare it down to two and leave the rest for other days. A sense of accomplishment goes a long way to reducing stress.
· Help others understand and support you. Family and friends can be helpful if they can "put themselves in your shoes" and understand what fatigue means to you. Cancer groups can be a source of support as well. Other people with cancer understand what you are going through.
· Relaxation techniques such as audiotapes that teach deep breathing or visualization can help reduce stress.
· Activities that divert your attention away from fatigue can also be helpful. For example, activities such as knitting, reading or listening to music require little physical energy but require attention.
· If your stress seems out of control, talk to a healthcare professional. They are there to help.
At what point in CRF should I call my doctor? |
Although cancer-related fatigue is a common, and often expected, side effect of cancer and its treatments, you should feel free to mention your concerns to your healthcare providers. There are times when fatigue may be a clue to an underlying medical problem. Other times, there may be medical interventions to help control fatigue.
Finally, there may be suggestions that are more specific to your situation that would help in combating your fatigue.
Be sure to let your doctor or nurse know if you have:
· Increased shortness of breath with minimal exertion
· Uncontrolled pain
· Inability to control side effects from treatments (such as nausea, vomiting, diarrhea, or loss of appetite)
· Uncontrollable anxiety or nervousness
· Ongoing depression.
What effect does poor nutrition have on cancer patients? |
Inability to maintain nutritional status is a particularly common problem for persons with cancer. The disease process and its treatment can lead to severe protein-calorie malnutrition, which is the single most common paraneoplastic syndrome or secondary diagnosis in the cancer patient. It is a major cause of morbidity and mortality. Protein-calorie malnutrition exists when the intake of macronutrients is inadequate to meet metabolic requirements. Progressive wasting, weakness, debilitation, compromised immune function, potential therapy intolerance, and ultimately death may result.
Anorexia, the loss of appetite or desire to eat, is the most common symptom in people with cancer that may occur early in the disease process or later as the tumor grows and metastasizes. Anorexia is present in 15%-25% of all cancer patients at the time of diagnosis and is almost universal in patients with widely metastatic disease. Anorexia is the most common cause of decreased nutrient intake triggering malnutrition and progressive inanition (progressive deterioration with muscle wasting and body compositional change) in malignancy.
Cachexia is a clinical wasting syndrome evidenced by weakness and a marked and progressive loss of body weight, fat, and muscle. Anorexia and cachexia frequently occur together, but cachexia may occur in individuals who are ingesting adequate calories and protein but experience malabsorption of nutrients. It has been estimated that one half of all people with cancer experience cachexia, two thirds while in a terminal phase of the disease. In addition, investigators have found no association between cachexia and tumor size, type, or extent. It has been observed that cancer cachexia differs from simple starvation. Individuals adapt to starvation by decreasing their basal metabolic rate, whereas in cancer patients, the basal metabolic rate is not adaptive and may be increased, decreased, or normal. Although the exact mechanisms causing cancer cachexia are unknown, several theories regarding its pathogenesis point to a complex mix of tumor, host, and treatment variables, which make this syndrome difficult to study.
What causes anemia and fatigue in cancer patients? |
Anemia, an abnormally low level of red blood cells, is a common complication of cancer and treatments such as chemotherapy and radiation therapy. Both cancer and its treatment can interfere with the supply of red blood cells - by inhibiting the production of bone marrow, or as a result of chronic blood loss during surgery. Although it is seldom life-threatening, cancer-related anemia can cause overwhelming fatigue, and may have a severe impact on quality of life.
What is the prevalence of cancer related anemia? |
Although there is no accurate estimate of its prevalence among people with cancer, evidence suggests that most people with cancer will develop anemia at some point during the course of their disease.
What are the symptoms of cancer related anemia? |
Fatigue affects up to 76% of people with cancer and is the most frequently reported symptom of anemia. Other clinical symptoms of anemia include dizziness, loss of appetite, inability to concentrate, shortness of breath, and cardiovascular problems such as chest pain and elevated heart rate.
What is the impact of cancer related anemia on quality of life. |
Anemia and its chief symptom, fatigue, can affect quality of life in many ways. Loss of energy associated with anemia can limit a patient's ability to perform everyday activities, including work, social, and leisure activities. Fatigue also may result in emotional problems such as loss of self-esteem and depression. For some, severe fatigue may diminish a patient's ability to cope with the disease and its treatment.
How is cancer related anemia diagnosed? |
Cancer-related anemia can be diagnosed with a blood test, which measures the volume of red blood cells in whole blood.
How is cancer related anemia treated? |
Severe, chronic cancer-related anemia traditionally has been treated with blood transfusions as needed. However, transfusions may result in complications such as fever, allergic disorders, infections, and suppression of the immune system in about 20 percent of cases. Medications to stimulate red blood cell production are an alternative to blood-transfusion therapy. Proper nutrition, vitamin and mineral supplements, antidepressant and anti-anxiety medication, lifestyle modifications, and even psychological counseling may help alleviate the fatigue associated with cancer and anemia.
What is cancer related cognitive dysfunction? |
Many people with cancer are surprised to discover that they have cognitive problems surrounding the cancer experience. These may include forgetting an important date or the name of a long-time associate, being unable to read an entire newspaper article in one sitting, suddenly finding it impossible to prepare family dinners that were once second nature.
Cognitive functioning is the information-handling aspect of behavior and encompasses the brain's attaining, processing, storage and retrieval of information. Many people with cancer experience difficulty with cognitive function, including memory loss, distractibility, difficulty in performing multiple tasks (multitasking), and trouble with arithmetic and language skills. Concerns relating to cognitive functioning may range in severity, intensity and duration.
The causes of cognitive problems are many, including the direct effects of cancer within the central nervous system, indirect effects of certain cancers, or effects of cancer treatments on the brain. Cognitive impairments may be subtle and go unnoticed, but they may also represent a devastating collection of symptoms for people with cancer. Cognitive impairment is a frequent finding in people with cancer with a prevalence of up to 85% in the very advanced stages of illness.
For people with cancer the most common types of memory impairment include problems with short-term memory, the storage of information from seconds to hours to days. Long-term memory is not often affected in people with cancer. The cognitive processes most affected include attention, learning and memory, and psychomotor efficiency.
Alterations in cognitive function are not necessarily related to a person's age. Cognitive impairments occur similarly in both children and adults with cancers. The repercussions for children may be long-term in nature, including difficulty with academic performance (particularly arithmetic), career pursuits, and quality of life.
What are the causes of cognitive dysfunction in cancer? |
Cancer Treatments
Advances in the success of treating cancer have been achieved through the combined use of surgery, radiation, cytotoxic drugs (i.e. chemotherapy) and immunotherapy. Many cancer treatments are not specific, that is, they affect more parts of your body than just where the tumor is located, and therefore place organs and tissues at risk. The central nervous system, including the brain, is particularly vulnerable to many cancer treatments. Studies estimate that 18% of persons receiving standard dose chemotherapy regimens experience cognitive dysfunction and those receiving high-dose adjuvant (agents used in combination that hasten or enhance the action of the primary agent) therapies have a higher incidence rate. More than 50% of persons receiving immunotherapy treatment (cytokines such as interferon, interleukin) experience memory, motor, executive functions (functions which allow self-control over our behavior and emotions) and mood alterations. Among the treatments for hormonally sensitive cancer (breast, ovarian, testicular, prostate) are surgical or medication manipulation that reduce the amount of circulating sex hormones; there is a high occurrence; there is a cognitive dysfunction and these deficits appear to be directly related to the reduction in sex hormones.
Medications
Additionally, many medications used to manage medical complications may cause side effects of cognitive impairment (immunosuppressive agents used in bone marrow transplant, antibiotics, steroids, drugs used to manage pain, nausea/vomiting, and other cancer-related symptoms).
Infection and Anemia
Infections and low red blood cell counts (anemia) are common in people with cancer and may result in cognitive dysfunction. People undergoing active treatment are particularly susceptible to infections and anemia.
Metabolic Problems
Some cancers themselves produce hormones or neurochemicals that alter the brain's function (small cell lung cancer, acute leukemia are two examples). Also, decreased production of thyroid hormones, produced by the thyroid gland in the neck, may reduce acuity of thinking and may be associated with low mood states. Dysfunction of the liver or kidneys may cloud mental functioning due to the accumulation of toxins within the blood that are normally excreted.
Nutritional Deficiency
Deficiencies in iron, vitamin B and folic acid may cause a decline in attention, perceptual-motor speed, memory, and verbal fluency.
Direct Causes of Cognitive Dysfunction
Tumors located in the central nervous system cause a predictable and progressive decline in mental functioning. In addition, the spread of cancer to the central nervous system can lead to cognitive dysfunction.
Addressing cognitive impairment as a symptom of cancer is important in restoring optimal quality living.
What are the symptoms of cognitive dysfunction in cancer? |
The symptoms of cognitive impairment among people with cancer vary widely based upon severity of dysfunction.
The symptoms of mild cognitive impairment are often referred to as "chemo brain" or "mental fatigue" and include vulnerability in complex information handling, susceptibility to distraction, and exhaustion with tasks requiring mental energy. "Chemo-brain" represents a lack of clear thought, not remembering what you are talking about, failing to remember what you are doing, forgetting phone numbers, and asking questions only to repeat them 15 minutes later.
A more extreme form of cognitive impairment more common in advanced illness is known as delirium. The symptoms of delirium include disordered attention and thinking commonly associated with lack of coordination in executing activities, disturbed sleep-wake cycle, disorganized thinking and speech, altered perceptions, and changes in mood. Different than dementia, delirium has an acute onset, has a fluctuating level of alertness, and generally only affects short-term memory.
What are the consequences of cognitive dysfunction in cancer? |
The consequences of cognitive impairment for people with cancer include interfering with the ability to make treatment related decisions, complete normal activities of daily living, and maintaining professional and social roles.
How do you manage cognitive dysfunction in cancer? |
Unfortunately, neurobehavioral functioning often receives the least attention from clinicians unless the person with cancer shows very severe behavioral changes. Multidisciplinary assessment and treatment for cognitive complaints can maximize your ability to function independently and productively for the longest period.
The first and most important strategy in managing cognitive dysfunction in people with cancer is to be alert to this disturbing symptom and evaluate its effect on quality living. Once cognitive dysfunction is recognized, many treatment and management options can make a huge difference in how you feel and function daily.
An important first step is to consider reversible causes of cognitive dysfunction such as anemia (low red blood cell count), nutritional deficiencies, depression, pain or other unmanaged symptoms, such as fluid and electrolyte imbalances and infection.
Why do cancer patients have hair loss? |
Hair loss occurs because anticancer drugs (chemotherapy) or radiation can affect normal cells, including the cells responsible for hair growth. This effect, however, is not permanent, and hair grows back normally once the therapy has been completed. The degree of hair loss depends on the chemotherapy drug, the dosage of chemotherapy or radiation, and how it is given. In radiation, only hair that is in the field of radiation will be affected by hair loss. It is very rare with radiation therapy hair loss to have an area where the hair is permanently thinner.
What cancer drugs usually cause hair loss? |
· Adriamycin
· Daunorubicin
· Etoposide
· Irinotecan
· Cyclophosphamide
· Epirubicin
· Docetaxel
· Paclitaxel
· Ifosphamide
· Vincristine
· Vindesine
What cancer drugs sometimes cause hair loss or thinning? |
· Amasacrine
· Cytarabine
· Bleomycin
· Busulphan
· 5-Fluorouracil
· Melphalan
· Vinblastine
· Lomustine (CCNU)
· Thiotepa
· Methotrexate
· Mitoxantrone
· Mitomycin C
What cancer drugs usually do not cause hair loss? |
· Carmustine (BCNU)
· Carboplatin
· Cisplatin
· Procarbazine
· 6-Mercaptopurine
· Streptozotocin
· Fludarabine
What can be done about chemo caused hair loss? |
Patients often ask if anything can be done to prevent the hair loss of chemotherapy. Generally, nothing will stop hair loss if the chemotherapy agent is one that causes hair loss. With some chemo drugs, hair loss is inevitable.
How should I deal with hair loss? |
· Consider getting a shorter haircut. Shorter hair is easier to manage under a wig. A shorter style will make your hair look thicker and fuller. It may also make your hair loss less traumatic.
· Some people choose to shave their head once hair starts falling out.
· Use mild shampoos and conditioner.
· Use soft hairbrushes.
· You may use a color rinse on your hair.
· Do not use permanent dye on your hair or get a permanent.
· Use hair dryer on low heat when drying hair
· Do not use brush rollers.
· Avoid sleeping in hair rollers because this pulls the hair.
· Wear a hairnet, soft cap or turban around your head at night to collect any loose hairs.
· Use a satin, polyester or cotton pillowcase, rather than a nylon pillowcase, which can cause irritation.
· Be aware that during the period of time you lose hair, the scalp may be tender or sensitive. Some people report having a tingling feeling of the scalp during hair loss.
· Returning hair may be different from the hair that was lost. Usually the pigment cells will go back to normal and original color returns. Texture may be finer for a while also.
How should I care for new hair? |
· Shampoo twice a week.
· Thoroughly massage scalp to remove any scaling.
· Avoid high heat from hair dryers.
· Keep hairstyling to a minimum, as new hair is prone to breaking.
· Avoid vigorous brushing, hairpins, curlers, and curling irons. Use wide-tooth combs.
· Mousse, gels, sprays may be used in moderation. Use products with normal to light holding abilities, as the high holding products may not be completely removed with mild shampoos. (Some hair styling aids can build up on the hair shaft resulting in dullness and possibly scalp irritation).
· Chemical curling is best avoided until hair is 3 inches long. Many patients cannot tolerate permanent wave solution on their scalp for possibly up to a year following chemotherapy/radiation.
· Hair coloring can also be irritating to the scalp. Permanent hair coloring is the most damaging to the hair shaft. Semi-permanent hair coloring products, which wash away, may be less harsh to the hair shaft. Most experts recommend waiting at least three months after the last treatment before using any type of hair coloring products.
When should I buy a wig? |
Many people suggest buying a wig before you lose your hair. However, the wig may not fit as well when your hair is completely gone, if fitted while hair is still present. Shop for the wig while you still have hair, but have it fitted after the hair has been lost.
· There are full service wig salons that fit and style wigs.
· Wig salons also sell turbans and scarves that come in a variety of colors and fabrics so that you can look good even when you are lounging at home or at bedtime.
· Some clinics/boutiques may cater to chemo patients and have other types of head coverings. Be creative. Some examples are mentioned here
· Wear stickies (double sided tape) to keep wig on, should it feel like it may slip. A well-fitted wig should not need stickies. Do NOT use any type adhesive on the scalp if your hair loss is due to radiation to the head.
· There are liners for wigs that tend to slip around, or do not fit well.
· The lining of a wig can sometimes irritate the scalp. It may be helpful to wear a thin cotton scarf or skullcap under the wig. These are usually available from wig suppliers.
If you can not afford a wig:
· Contact the American Cancer Society's Look Good/Feel Better Program--800-227-2345
· Contact Cancer Care at 800-813-4673
· Some insurance plans cover the cost of wigs. Check with your particular insurance company.
If you buy a wig save the receipt, it can be a medical tax deduction.
Are there any good Internet resources for coping with cancer? |
The NCI has a great site at http://www.cancer.gov/cancerinfo/coping/ it contains information about complications of cancer and its treatment, as well as treatment-related nutritional concerns, supportive care clinical trials, and end-of-life issues.
I'm having trouble reading on the Internet, what can I do? |
If you are having problems reading text on newsgroups, web sites, or in documents there is a free text-to-speech program at http://www.readplease.com/ that may be of help. They also have a Plus version for sale (Commercial web site).
What organizations help children with cancer? |
Association for the Care of Children's Health - Provides information for making informed decisions about care.
7910 Woodmont Avenue, Suite 300
Bethesda, MD 20814
1-800-808-ACCH
(609) 224-1742
Candlelighters Foundation - Provides information and support for parents of children with cancer.
7910 Woodmont Avenue, Suite 460
Bethesda, MD 20814
1-800-366-2223
Chai Lifeline/Camp Simcha - Provides a free kosher camp for children of any religion with cancer, including transportation from anywhere in the world.
48 West 25th Street
New York, NY 10010
1-800-343-2527
Children's Hospice International - Provides many types of assistance to children with cancer and their families.
1850 M Street NW, Suite 900
Washington, DC 20036
1-800-242-4453
Federation for Children with Special Needs - Provides support for parents regarding educational and health care rights.
95 Berkeley Street, Suite 104
Boston, MA 02116
(617) 482-2915
Hole in the Wall Gang Camp - A free ten-day summer camp for children ages seven through fifteen with cancer.
565 Ashford Center Road
Ashford, CT 06278
(860) 429-3444
http://www.holeinthewallgang.org/
Make-A-Wish Foundation of America - Offers sick children ages two through eighteen an opportunity for an adventure.
100 W. Clarendon, Suite 2200
Phoenix, AZ 85013
(602) 279-9474
http://www.wish.org/
Sibling Information Network - Publishes a newsletter of interest to those who have children with developmental disabilities.
University of Connecticut
249 Glenbrook Road, Box U64
Storrs, CT 06269
(860) 486-4985
Special Love, Inc. (Camp Fantastic) - Offers recreational programs for children with cancer and their families.
117 Youth Development Court
Winchester, VA 22602
(540) 667-3774
Starlight Foundation International - Provides entertainment for sick children between ages four and eighteen.
12424 Wilshire Boulevard, Suite 1050
Los Angeles, CA 90025
1-800-274-7827
Sunshine Foundation - Grants wishes to sick children.
P.O. Box 255
Loughman, FL 33858
1-800-767-1976
Sunshine Kids - Offers sports, cultural events, and group activities for children being treated for cancer.
2902 Ferndale Place
Houston, TX 77098
1-800-594-5756
Vital Options - A group dedicated to providing support to young adults with cancer and other serious illnesses.
(818) 508-5657
How can parents help children cope with cancer? |
· Buy a notebook/diary and note down any questions and information. This simple task helps to empower your role as a parent in advocating for your child.
· Talk to other parents on the ward who have been through what you are now going through. You cannot underestimate the support you may gain from these interactions.
· Ask for any further literature.
· Despite circumstances, maintain a normal lifestyle, as far as is possible. Treat the child as normally as possible.
· Keep in mind the needs of brothers and sisters, they may need special time and attention now and then.
· Keep all avenues of support open, you never know when you may need them for both your child and yourselves.
· Give yourself time to talk with your husband/wife or if you are a single parent with someone close to you.
· Allow yourself time just for yourself.
· You may want to keep a journal/scrapbook for your child so that when they are older they are able to have a record of this important stage in their lives. You could include: photos, hair samples, people who visited, etc.
· Don't allow all your discussions to revolve around the sick child, make time to do things you enjoyed doing together before your child became sick.
· Find ways (such as reading, sewing, and puzzles) to reduce frustration or boredom when you're waiting around for procedures.
· Ask your doctor or Social Worker to link up with other parents living in your area. This can be helpful for both you and your child particularly if the children are around the same age.
· If it's possible, try to work out a roster or system whereby you and your spouse can share and alternate the care of your child at the hospital. Thus enabling you both to spend time with the hospitalized child and other siblings and to also have a rest or time to yourself. Both parents can familiarize themselves with the child's life in the hospital, the treatment and get to know the staff. This can reduce the disparities between parents where one becomes much more actively involved in the treatment than the other. A single parent might enlist a family member or friend, who is close to the child, to occasionally stay at the hospital to give you a break.
· Utilize the services/resources at the hospital for support.
· There are outside professionals, agencies and organizations which can offer a variety of support, information and assistance. Ask your Social Worker for this information.
· If your child is in remission, use this time to encourage positive attitudes and to also possibly initiate discussion to update information with your child if you feel this has not occurred naturally throughout the course of treatment. Often children may discuss things more easily about their fears and concerns, while the pressure of treatment has lessened.
· Encourage family and friends to visit the hospital but explain to them what to expect so they can prepare themselves for things like the drip attached, bald head, and other sick children.
What about school issues for a child with cancer? |
Continuing school for the child with cancer is vital as:
· It reinforces a sense of well being.
· The child is doing something that other normal children are doing
· It takes illness and treatment off his/her mind
· It prevents them from falling behind which can lead to possible learning problems and lowering of self-esteem and confidence
· It is important for social contact with peers and reduces social isolation
· Allows participation in various activities perhaps not otherwise available and/or in groups.
The school's administration office should be informed about your child's cancer and its treatment, restrictions on activity, precautions etc. In that way the child's teacher(s) and school nurse will be informed of the child's needs and anticipated absences.
While your child is in the hospital, he/she should be visited by a hospital schoolteacher who will address your child's educational needs. The hospital schoolteacher can also liaise with your child's school so that work can be sent for the child to do while in the hospital. You may also want to ask the teacher about issues regarding home tutoring or correspondence if they have not been already answered.
How should one discipline the child with cancer? |
Discipline is an important part of growing up in a family. Many parents find it very difficult to maintain discipline with their child who has been diagnosed with cancer. Having seen your child very ill, in pain, knowing that their future is uncertain and that some children may die makes it difficult for parents.
Over-protection may deny your child the opportunity to participate in normal activities necessary for his/her growth and development. If you are unsure how much to discipline or when to limit or restrict certain activities then ask your doctor, Social Worker, psychologist and/or discuss it with other parents.
Knowing the extent to which the illness/medication is affecting him/her both physically and psychologically and what the child is and isn't allowed to do, will permit you to treat him/her as you would any other child, yet not over nor under discipline.
Will positive thinking improve the outcome of dealing with an incurable disease? |
"Unfortunately, there is little or no evidence to support this widely held view. See http://bmj.com/cgi/content/abstract/325/7372/1066?ijkey=evgROtYJ2rfpE" - Steph
What affect will a positive attitude have? |
"I was sorry to see that the most recent research shows that a good attitude does not actually help survival. So, in the same vein as Rico, I'm going to say that perhaps the focus should be on living with cancer and not surviving cancer. There's an interesting paradox at work here: the better your attitude, the better the people around you feel. And the better they feel the more support they have to give you. So you are an immediate benficiary (sic) in that respect. - John
"However, in terms of quality of life issue, it's much better to have a positive attitude than going into a depression." - Peter L
What are clinical trials? |
Clinical trials are research studies looking for better ways to prevent, diagnose, and treat cancer. Patients who participate in clinical trials help physicians find out if new treatments are better than standard treatment.
What are the different types of clinical trials? |
Clinical trials generally fall into one of four categories. Within each category, there will be many variations based on the type, location, and stage of the cancer.
· Treatment Trials-Treatment trials test new treatments, such as medications, surgeries, or radiation.
· Prevention Trials-Prevention trials evaluate new ways to lower the risk of developing cancer or preventing recurrence of cancer.
· Screening Trials-Screening trials look for the best ways to test for cancer.
· Quality of Life Trials-Quality of Life trials test ways to improve comfort and quality of life for cancer patients.
What is a phase I trial? |
These first studies in people, evaluate how a new drug should be given (by mouth, injected into the blood, or injected into the muscle), how often, and what dose is safe. A Phase I trial usually enrolls only a small number of patients, sometimes as few as a dozen.
What is a phase II trial? |
A phase II trial continues to test the safety of the drug, and begins to evaluate how well the new drug works. Phase II studies usually focus on a particular type of cancer.
What is a phase III trial? |
These studies test a new drug, a new combination of drugs, or a new surgical procedure in comparison to the current standard for treatment. A participant will usually be assigned to the standard treatment group or the new treatment group at random (called randomization). Phase III trials often enroll large numbers of people and may be conducted at many doctors' offices, clinics, and cancer centers nationwide.
Should I be in a clinical trial? |
I may not have time for the clinical trial set-up, start-up, staffing, enrolling, data analysis and eventual publication of peer-reviewed findings in the appropriate medical journal.
http://www.cancer.gov/clinicaltrials/digestpage/protecting-participants/ Digest Page: Protecting Participants in Clinical Trials
http://cis.nci.nih.gov/fact/2_11.htm Clinical Trials: Questions and Answers
When would my doctor recommend a clinical trial? |
Generally, physicians recommend clinical trials because they believe a clinical trial represents the best opportunity for patients to receive effective treatment. Clinical trials offer access to the newest treatment options and an opportunity to help the medical community develop improved cancer treatments.
How do I find clinical trials? |
Your primary cancer physician is the first and most important person with whom you should discuss your interest in participating in clinical trials. Your physician will know which treatments, currently in the clinical trial test phase, might be beneficial for you and can help you with information about locations for specific clinical trials.
What should I know before deciding on a clinical trial? |
A first important step is to gather information about your disease and available treatment options, including clinical trials. We encourage you to then have a discussion with your primary cancer physician and if you decide to seriously consider clinical trials, with the staff responsible for the clinical trial.
Does the result of a study impact the chance it will be published? |
"In the medical literature, there is a very significant publication bias - positive studies (especially phase 1 or 2) are perhaps 20 times more likely to be published in the peer-reviewed literature than negative ones." - Steph
Before participating in a clinical trial |
Anyone considering a clinical trial should feel free to ask any questions or bring up any issues concerning the trial at any time. The following suggestions may give you some ideas as you think about your own questions.
Questions to Answer - The Study
· What is the purpose of the study?
· Why do researchers think the approach may be effective?
· Who will sponsor the study?
· Who has reviewed and approved the study?
· How are study results and safety of participants being checked?
· How long will the study last?
· What are my responsibilities if I participate?
Questions to Answer - Possible Risks and Benefits
· What are my possible short-term benefits?
· What are my possible long-term benefits?
· What are my short-term risks, such as side effects?
· What are my possible long-term risks?
· What other options do people with my risk of cancer or type of cancer have?
· How do the possible risks and benefits of this trial compare with those options?
Questions to Answer - Participation And Care
· What kinds of therapies, procedures and /or tests will I have during the trial?
· Will they hurt, and if so, for how long?
· How do the tests in the study compare with those I would have outside of the trial?
· Will I be able to take my regular medications while in the clinical trial?
· Where will I have my medical care?
· Who will be in charge of my care?
Questions to Answer - Personal Issues
· How could being in this study affect my daily life?
· Can I talk to other people in the study?
Questions to Answer - Cost Issues
· Will I have to pay for any part of the trial such as tests or the study drug?
· If I have to pay, what will the charges likely be?
· What is my health insurance likely to cover?
· Who can help answer any questions from my insurance company or health plan?
· Will there be any travel or childcare costs that I need to consider while I am in the trial?
Tips for asking your doctor about trials |
When you talk with your doctor or members of the research team:
· Consider taking a family member or friend along, for support and for help in asking questions or recording answers.
· Plan ahead what to ask--but don't hesitate to ask any new questions you think of while you're there.
· Write down your questions in advance, to make sure you remember to ask them all.
· Write down the answers, so that you can review them whenever you want.
· Consider bringing a tape recorder to make a taped record of what's said (even if you write down answers).
How do you know whether a treatment works? |
“There are only 3 useful measures of whether a treatment "works"
1)
Does it cure you?
2)
If not, does it make you live longer?
3)
If not, does it improve the quality of whatever life is
left.” – Steph
Unrealistic expectations? |
It is frequently easier not to confront the reality of the situation but it is not in your best interest to get your hopes up unreasonably. It is unrealistic to expect that clinical trials or alternative treatments will cure advanced cancer when the cancer has not responded to standard treatment.
What should I do if my doctor is not doing enough for me? |
Stephen Barrett, M.D. offers a word of advice: "When you feel your physician isn't doing enough to help, don't stray from scientific health care in a desperate attempt to find a solution. Instead, ask your physician to provide a more detailed explanation or refer you to another doctor."
There are no available treatment options left, what should I do? |
Many untested therapies are being promoted by people that do not have your best interest in mind. You will be confronted with worthless cures, at unrealistic prices, none of which will do you any good. Treatments that have not been through a complete clinical trial with satisfactory results are a waste of your hope, your money, and your remaining time. Put all of your effort into making your remaining time better.
Do cancer patients ever get suicidal thoughts? |
The statistics on suicide show that the suicide rate for white men increases with age, and that white men over 65 are about 4 or 5 times more likely to commit suicide than older white women. Illness, loss of wife or other life partner, family and financial difficulties, alcoholism, and comparable difficulties intensify a man's urges toward wanting out.
An article Suicide and Cancer in Late Life (Vol. 41, No 12, December 1990) published in the journal Hospital and Community Psychiatry concerned suicide among older men who were, or suspected that they were, in advanced stages of cancer. The article's authors are Yeates Conwell, M.D., Eric D. Caine, M.D., and Kurt Olsen, Ph.D. Drs. Conwell and Caine hold professorships and Dr. Olsen holds an assistant professorship at prestigious academic or health care institutions. The article's Abstract, in full, states: In a controlled psychological autopsy study of suicide in late life, eight cases in which the victim's belief that he had cancer played a major role in the decision to end his life, were examined. All victims were men. The majority had major affective disorders, but none had been seen in mental health care settings. Other common characteristics were an active relationship with a primary physician, numerous losses, prior experience with cancer or debilitating disease, and a rigid, self-sufficient personality. The cases illustrate the complex determinants of suicidal behavior in the elderly and suggest preventive strategies.
Physical illness is a commonly cited risk factor for suicide, especially in late life. Of the physical illnesses associated with suicidal behavior, cancer stands out. It has been estimated that malignant neoplasm was present 20 times more often in suicide victims than expected in the general population, and studying suicide and accident victims over age 50, found cancer was significantly more common among those who took their own lives.
In addition, large-scale epidemiological studies have found cancer patients to be at significantly higher risk for suicide than the general population. Cancer has a special psychological significance in our culture, where it is associated with pain, suffering, and death.
Suicide has crossed my mind, what should I do? |
You're experiencing a tremendous amount of stress and pain, and may have never learned to manage the emotions associated with both. Suicide may seem like your only escape from mounting pressure, although it's not. Doing (or attempting) suicide, however, doesn't really address the underlying causes of your pain, whatever they may be.
That's often the case with people who attempt suicide or engage in self-injurious behavior. But there are other options available, and I recommend you seek them out as soon as possible.
The most important thing is to start seeing a therapist, if you haven't already, and be completely honest with him or her about what's going on with you. If you can find a therapist experienced in treating people with cancer, all the better.
If money is a problem, you can seek out a community mental health center or other agency offering reduced-fee services.
You've survived cancer: now what? |
Although public health experts like to point out that overall rates of death from cancer have not budged, some cancers are a lot more survivable than others. More than ever, a diagnosis of cancer today isn't necessarily the death sentence it may have been 20 years ago.
For some adult cancers, the survival rate can be as high as 70%. For some pediatric cancers, the cure rate can be even higher.
The simple goal of survival for many cancer patients becomes so all-encompassing that many survivors are badly under prepared to a return to everyday life.
What do I need to know about life after survival? |
"People should have information about the psychosocial issues that they're going to face when they walk out of the hospital door," says Susan Nessim, founder of Cancervive, a group that aims to assist people who have experienced cancer deal with return to normal life. She also is author of Can Survive: Reclaiming Your Life After Cancer.
"Your relationship to everyone around you is going to change," says Nessim, who is a survivor of rhabdomyosarcoma, a childhood cancer of the muscles, which she developed in 1975 at age 17. "You may find yourself cutting off relationships that aren't working. You may want to change jobs because you've had this meaningful, life-changing experience.
"Once you finish treatment, people start moving away from you because they assume you're fine now," she says. "I was often told, 'You look great, you've got your hair back, so just get on with your life.' But it's not that easy. Many of us are not prepared for the fact that everything isn't going to be what it was."
Beyond the difficulties of cancer treatment lie the more mundane problems of life as a survivor. Many cancer survivors have trouble keeping health coverage.
"It's common for a cancer survivor's health insurance premium to go up so high they can't afford coverage," says Nessim. "Or certain scans or procedures won't be allowed under the plan, so in one way or another, they get cut out of coverage."
Survivors may have substantial medical bills to pay down, and some employers are reluctant to hire someone who has had cancer because of fears the person will not physically be able to handle work.
"All types of discrimination may be faced by survivors," Nessim says. "Sometimes people return to work to find that their job is gone or they've been shifted to a lower position. They may find themselves loaded down with travel assignments in an effort to get rid of them. Employers know the bounds of the Americans with Disabilities Act, and they can be very savvy about how to get around hiring people who have had cancer or other major health problems, such as AIDS."
If you live in the U.S. see the recommended links section for the URL of the Americans with Disabilities Act.
What can be done about cancer related infertility? |
Of the problems faced by cancer survivors, damaged fertility is one of the least understood, says Fertile Hope's Nohr. The side effects of radiation, chemotherapy, or surgery can leave a person infertile.
"I would estimate that only 10% of oncologists even discuss the fertility issue with female patients who are under 45 before treatment," she says. "That is a big, big problem. Cancer patients are much more empowered now than they have been in the past, getting second opinions and researching their treatment options, but many patients don't understand that some cancer treatments may leave them unable to have children."
Cancer patients can take special fertility-saving measures before treatment. Adult and adolescent males can make deposits in a sperm bank for future use. Prepubescent boys can have testicular tissue frozen to preserve sperm.
For women the issues are more complex. A woman's fertility-saving measures depend entirely on her cancer treatment and her particular physiology. Eggs can be extracted and frozen, as can embryos. From there, the measures become increasingly tailored to an individual woman's needs.
"That's why all women cancer patients who have the potential to bear a child need to see a reproductive endocrinologist before cancer treatment begins," says Nohr. "Oncologists do not know enough about fertility. They tend to be not well educated about these issues, and that's why women need to be very proactive and think farther down the road to protect their fertility if possible."
Why do I need talk therapy? |
To have a group of survivors you can talk to is vital. You learn from their experiences and mistakes. Once you finish treatment, your issues are dealing with everyday life. Talking with others about cancer issues eases the transition.
What is palliative care? |
Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care:
· Provides relief from pain and other distressing symptoms
· Affirms life and regards dying as a normal process
· Intends to neither hasten nor postpone death
· Integrates the psychological and spiritual aspects of patient care
· Offers a support system to help patients live as actively as possible until death
· Offers a support system to help the family cope during the patient's illness and in their own bereavement
· Uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated
· Will enhance quality of life, and may also positively influence the course of illness
· Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
What is palliative care for children? |
Palliative care for children represents a special, albeit closely related field to adult palliative care. Palliative care appropriate for children and their families is as follows; the principles apply to other pediatric chronic disorders
· Palliative care for children is the active total care of the child's body, mind and spirit, and also involves giving support to the family.
· It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease.
· Health providers must evaluate and alleviate a child's physical, psychological, and social distress.
· Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited.
· It can be provided in tertiary care facilities, in community health centers and even in children's homes.
What organizations provide home and hospice care? |
Community Health Accreditation Program, Inc. - Provides a list of accredited home care organizations.
350 Hudson Street
New York, NY 10014
1-800-669-9656
Gentiva Health Services - Offers help with all home health care services.
3 Huntington Quadrangle 2S
Melville, NY 11747
1-888-GENTIVA or 1-888-436-8482
http://www.gentiva.com/
National Association for Home Care - Represents all home health care agencies in the U.S. They offer publications on selecting home care.
519 C Street NE
Washington, DC 20002
(202) 547-7424
National Hospice Organization - Offers information on the goals of hospice and how to choose a hospice.
1901 North Moore Street, Suite 901
Arlington, VA 22209
1-800-658-8898
Oley Foundation - Offers help with parenteral or enteral nutrition-that is, feeding by IV or stomach tube.
214 Hun Memorial
Albany Medical Center A-23
Albany, NY 12208
1-800-776-OLEY
Visiting Nurse Associations of America - Provides skilled nurses, aides, and therapists for home care.
3801 East Florida Avenue, Suite 900
Denver, CO 80210
1-800-426-2547
Are there guidelines for estimating length of survival in palliative patients? |
Physicians are frequently asked questions around expected time of survival, mostly by patients and families. Additionally, with increasing availability and awareness of palliative care services, there will be a need to define eligibility criteria, which will be in part based on prognosis.
Physicians by and large know that their estimates are just that: estimates. Patients and families generally understand that as well. However, prognosticating carries with it some risks. Overestimating the length of survival (the more common error, according to studies) leaves families feeling they have been robbed of time. Underestimating leaves the patient and family wondering when the end is about to appear, and perhaps questioning the credibility of the source of that information. All involved need to realize that estimates are not guarantees, and that conditions at this time of life may change rapidly.
A number of studies have attempted to address the issue of estimating length of survival in individuals with terminal disease. Although there are no mechanisms to predict the future with certainty, the following may help in determining the matter for the patient at hand.
Cancer diagnosis with a poor prognosis |
Some illnesses are associated with a diagnosis that virtually always carries a poor prognosis. Examples would include pancreatic cancer, most biliary tract cancers, metastatic adenocarcinomas of unknown primary, and untreated small cell lung cancers.
Cancer circumstances with a very poor prognosis |
In addition to the functional decline, usually seen in the terminal phase of progressive illness, some circumstances have a very poor prognosis in specific illnesses:
· Multiple metastases to the brain, liver, or lung
· Refractory hypercalcemia
· Ongoing bleeding from tumor, or bone marrow failure without transfusions
Illnesses showing a momentum of functional decline |
The momentum of decline in functional status, when interpreted in the context of other parameters of physiologic decline (such as organ failure), provides some of the most intuitively valid information for prognosticating terminal illness. The underlying premise is that there tends to be a consistency to the rate of functional decline as the end of life nears; rapid changes tend to continue rapidly and slow changes continue slowly (although the "final changes" often occur quickly).
An illness whose functional decline is noted month-to-month will likely continue for a number of months. An illness whose functional decline is noted weekly is likely to continue for a number of weeks. Daily functional decline may indicate a prognosis limited to days.
By observing the course of the illness thus far, and understanding the illness, one can make general estimates of future deterioration. It would be important to distinguish between reversible and irreversible causes resulting in the functional decline.
Clinical prediction of survival has been found to be erroneous (defined as more than double or less than half of actual survival) 30 % of the time in expert hands. Two thirds of errors are based on over-optimism and one third on over-pessimism.
Does pain have an effect on survival? |
Pain has not been associated with length of survival (except "unendurable pain" in one study).
Do opioids have an effect on survival? |
Treatment with opioid analgesics has not been found to impact length of survival.
What is the Karnofsky performance scale? |
The following is a summary of a few studies that address estimating survival in patients with terminal disease. Initially, study of the Karnofsky Performance Status showed that performance status is an important predictor of survival. Further work has attempted to refine the ability to predict length of survival. Preexisting disease, prior treatment, psychological status and social support may affect the length of survival in a terminal illness.
Karnofsky Performance Scale
% Criteria
100 Normal; no complaints; no evidence of disease
90 Able to carry out normal activity; minor signs or symptoms of disease
80 Normal activity with effort; some signs or symptoms of disease
70 Cares for self; unable to carry on normal activity or do active work
60 Requires occasional assistance, but is able to care for most of his/her needs
50 Requires considerable assistance and frequent medical care
40 Disabled; requires special care and assistance
30 Severely disabled; hospitalization is indicated although death not imminent
20 Very sick; hospitalization necessary, active supportive treatment necessary
10 Moribund; fatal processes progressing rapidly
0 Dead
Where can I find more information about estimating length of survival in palliative patients? |
See the PDF document at http://palliative.info/teaching_material/Prognosis.pdf
What are the rights of the dying? |
· The right to be treated as a living human being.
· The right to maintain a sense of hopefulness, however changing its focus may be.
· The right to be cared for by those who can maintain a sense of hopefulness, however changing this may be.
· The right to express feelings and emotions about death in one's own way.
· The right to participate in all decisions concerning one's care.
· The right to be cared for by compassionate, sensitive, knowledgeable people who will attempt to understand one's needs.
· The right to expect continuing medical care, even though the goals may change from 'cure' to 'comfort' goals.
· The right to have all questions answered honestly and fully.
· The right to seek spirituality.
· The right to be free of physical pain.
· The right to express feelings and emotions about pain in one's own way.
· The right of children to participate in death.
· The right to understand the process of death.
· The right to die.
· The right to die in peace and dignity.
· The right not to die alone.
· The right to expect that the sanctity of the body will be respected after death.
Note: this list is controversial and opens issues not answered here. Use it as a guideline at your own discretion.
What are the rights of a person dying at home? |
· I have the right to sufficient support from the National Health Service and the community to enable me to die at home, if I so wish, whether or not I have relatives to care for me.
· I have the right not to die alone; although with the right to be left alone, if desired.
· I have the right to expect the local priest to ask the neighborhood to support me and those caring for me
· I have the right to expect the local priest or other community leader to ask the neighborhood to support me and those caring for me.
· I have the right to have 'midwives for the dying' or their equivalent to attend to my physical, emotional and spiritual needs.
· I have the right to the same expertise of pain relief as I would obtain if occupying a hospital or hospice bed.
· I have the right not to be taken without my consent to hospital as my condition deteriorates, or, if a hospital operation is required to relieve pain, I have the right to be brought home again afterwards.
· I have the right to have any Living Will I have signed respected and, if not fully conscious myself, to have the wishes of my appointed proxy respected.
· I have the right to reject heart stimulants, blood transfusions or other medical interventions to prolong my life.
· I have the right, to the extent that I so wish, to be told the truth about my condition and about the purposes of, alternatives to, and consequences of, any proposed treatments.
· I have the right to fast as death approaches, if I so desire, without being subjected to forced feeding in any form.
· I have the right to discuss my death and dying, my funeral or any other related matters openly with those caring for me.
· I have the right to as conscious and dignified a death as possible in the circumstances.
· I have the right, if I so express the wish and if the circumstances allow, for my body to remain undisturbed at home after death for a period, and for my funeral to be handled by my relatives and friends, if they so desire, without intervention by funeral directors.
Note: this list is controversial and opens issues not answered here. Use it as a guideline and at your own discretion.
What are the physicians practice guidelines for supportive care? |
They are beyond the scope of this FAQ. If you still want to know, go to this site for the PDF documents http://www.nccn.org/physician_gls/f_guidelines.html Topics covered are:
· Cancer and Treatment-Related Anemia
· Antiemesis
· Cancer-Related Fatigue
· Cancer Pain
· Distress Management
· Fever and Neutropenia
· Palliative Care
Treating symptoms at the end of life |
Patients at the end of life experience many of the same symptoms and syndromes, regardless of their underlying medical condition. Pain is the most obvious example, but others are difficult breathing (dyspnea), transient episodes of confusion and loss of concentration (cognitive disturbances and delirium), loss of appetite and muscle wasting (cachexia), as well as nausea, fatigue, and depression. Taken together, these and other symptoms add significantly to the suffering of patients and their families, and to the costs and burden of their medical care. Yet in many cases the symptoms could be treated or prevented.
Pain, for example, is a multibillion-dollar public health problem in the United States. Over half of all cancer patients experience pain related to their disease or its treatment. Similarly, half of all cancer patients and 70 percent of all hospice patients experience shortness of breath in the last weeks of life. Yet, dyspnea remains under-diagnosed and under-treated. Forty percent of all patients experience cognitive disturbances during the final days of life, and high numbers of terminally ill patients experience cachexia regardless of their primary disease. Significantly, these symptoms occur not in isolation but in clusters, with most patients experiencing combinations of symptoms that vary greatly in their prevalence and severity, as well as in the suffering they cause.
Basic research has improved our understanding of the underlying mechanisms of symptoms that are commonly experienced at the end of life, particularly with respect to pain. In some cases, clinical research has translated this knowledge into new drugs and other interventions that can effectively relieve or prevent these symptoms, even where the underlying disease cannot be cured. At present, however, there remain a number of important gaps in knowledge.
Clinical care would benefit from an integrative, multidisciplinary research initiative that brings basic and clinical researchers together to address the constellation of symptoms at the end of life. The following areas should receive priority:
· Epidemiology. -- There is a need for better data on the incidence and combinations of symptoms that are experienced at the end of life in specific populations. Epidemiological data will demonstrate the magnitude and costs of the problem, as well as suggest specific topics for basic and clinical research.
· Basic research. -- Additional research is needed on the mechanisms and interactions of these symptoms, including biochemical, neuronal, endocrine, and immune approaches. The possibility of common factors, mechanisms and pathways across different symptoms should be examined There is also a need for research on the mechanism of action of successful therapies, with particular attention to the role of opioid receptors. This research could lead to therapies that are better targeted, more selective in their action, and thus produce fewer side effects.
· Clinical research. -- Because these symptoms have multiple determinants, and occur in clusters, successful interventions will also be multifactorial, including behavioral as well as pharmacological approaches. Combination therapies and off-label drugs should be explored. Researchers should be alert to differences in outcome based on age, gender, and underlying disease. Interventions to mobilize psychosocial and spiritual resources may be of help mediating the perception and interpretation of symptoms. The goal of research should be to test a wide range of interventions that could be successfully implemented in the home or hospice, as well as in the hospital.
· Methodology. -- Researchers will need better tests for diagnosing and assessing the level of severity of these symptoms, as well as for monitoring the effectiveness of interventions. Standardized terminology and definitions of symptoms should be established. Particular attention should be paid to validating subjective and nonverbal measures. Better data and tools are also needed for evaluating outcomes, in order to determine costs and strengthen accountability for the quality of care at the end of life. It is important to develop and use measures, which reflect the subjective experience of the effects of symptoms on quality of life.
Research is also needed on the ethical issues that may be barriers to research at the end of life, including the needs and protection of vulnerable populations, especially the role of privacy during this important phase of life. Attention must be paid to community and individual preferences, about the relative value of symptom management at different points in the dying trajectory, and to the development of comprehensive strategies for the early detection and treatment of the full range of symptoms at the end of life -- an approach that will reduce costs as well as burdens, while preserving the patient's dignity and quality of life.
Talking about cancer and death |
"...every family goes through the stage of walking on eggshells and refusing to talk about the issues. But almost every family gets past that, and then things are much better." - Steph
How does one deal with death? |
Understanding the Dying Process http://www.crossingthecreek.com/
http://www.growthhouse.org/pages.html About Dying, how we feel about it and how we feel about leaving people behind
http://www.abcd-caring.org/resources.htm
Molly Sower Sugarman, a former columnist for the Sacramento Bee, has written a booklet about the end stages of cancer "Choices, Living With Cancer, Dying With Dignity". This booklet is available free of charge to anyone that asks. It can be viewed on-line in HTML at the late Robert Young's web site Phoenix5 at: http://www.phoenix5.org/resources/choices/choicesmenu.html
What do I say to my small children about me dying? |
http://www.growthhouse.org/educate/flash/mortals/layouts/frameset1.html online excerpts from the book Handbook for Mortals telling children about an impending death
How do I explain chronic illness to a child? |
How can I better help my children with grief? |
http://www.beyondindigo.com/children/
How can I help my children with grief, death, and funerals? |
http://www.hospicenet.org/html/child.html
How can we help children that have lost a classmate to cancer? |
http://serp.la.asu.edu/Health_dir/Health_dir9/Treasurd.pdf
Treasured Memories
Objective:
The students will learn strategies to better cope with the feelings associated with the death of a loved one. Students may have to face the experience of death, perhaps involving a pet, relative, friend or even a classmate. The activity below is designed to address the concept of coping with death and facilitating a discussion.
Directions:
1. Inform students that they will be discussing and listening to stories related to grief and loss. At the end of the discussion, they will be drawing a treasured memory associated with the loss of a loved one.
2. Gather students together in a comfortable, informal environment.
3. Begin discussion by asking if anyone has experienced a loss. Be sure to accept pets as acceptable responses. As an option, chart responses.
4. Choose one of the following pieces of literature to engage students prior knowledge and open discussion about grieving and loss:
· Annie and the Old One, by Miska Miles
· I'll Always Love You, by Hans Wilhelm
· I'll Love You Forever, by Robert Munsch
(These titles are available in Spanish.)
5. After reading the literature selection, engage students in a discussion, focusing on the positive memories of a loved one. The following questions may be used to encourage discussion of treasured memories:
· What was the favorite color of the person?
· What smells do you associate with them?
· What do you think the person would tell you if they could talk to you today?
· What would you say to the person if you still had the chance?
· What is the favorite animal of the person who died?
· What could you do to help someone feel better after the death?
· Share a good memory about the person/pet who died.
· What do you like best about the person/pet who died?
· What is the funniest memory about the person/pet who died?
· What mementos do you have of the person/pet who died?
6. Using the activity sheet provided, have students draw their treasured memory of a loved one.
7. Invite students to volunteer to orally share their drawings and memories.
8. These can be gathered into a class book or displayed on a class bulletin board, entitled "Our Treasured Memories ..."
How to say goodbye to loved ones |
People who have watched their loved ones suffer through the battle of a long term illness, are facing this battle now with their loved ones or are facing their own loss of life.
There is the question of which is worse, losing a loved one suddenly or having the time to say goodbye? But how do we say goodbye forever? How do we prepare ourselves for the death of our loved ones when we cannot ever give up hope that they "will make it"? How do we understand what it is like to be without them when as long as they are alive they are with us? How do we know what it will be like to "see them die" before our eyes and watch their last breath taken as they leave this world? There is no way we can prepare for the emptiness and the shock that they actually did die. The hope is gone.
So how do you say goodbye forever? How do you say, "I love you" and know that it will be the last time? The only true goodbye can only be said after the death when you are suddenly faced with the reality that they are no longer with us.
There are cases where the terminally ill can bring us the greatest peace by seeing their peace of acceptance, that miracle that is the inner peace that they know they will be in a "better place". They reach out to comfort those of us they will leave behind because very often, their fear is somehow replaced with strength.
The fear of living with the pain can be horrifying. Some cannot be relieved of their pain and this can be the most horrifying experience for us to watch them go through. The prayers to have them taken out of their suffering sometimes bring guilt. An abundance of emotions may overwhelm the caregiver. The death can be a relief because of the emotional and physical exhaustion of caring for and watching their pain. Guilt should not be there, but it is. Understanding that you are not alone with this helps ease those feelings of guilt. Helps you to understand that nothing more could have been done and for it to be "over" is a normal prayer to end the suffering, both for the living and for the dying.
Therein lies the strength. The love and support shared for all the fears, the regrets, the unknown, the loss of hope for their lives, the hope of recovery for ours. Letting go is not forgetting. Letting go of the pain but not the love or the memories can bring us to that peace of acceptance.
How to die as well as you were born |
Resources for people facing life-limiting illness, their families, and their professional caregivers http://www.dyingwell.org/
Should you develop a crisis management plan? |
You never know when an emergency may arise, and the worst time to try to recall important information is when you are anxious and upset. Prepare for a crisis by creating an emergency phone list of numbers, including doctors, nurses, pharmacists, family members, neighbors and friends. Also include information about your loved one's insurance, social security, and living will/power of attorney.
How to take care of your family and friends |
Serious illness can suddenly make families come together more closely than they may have been for years. Adult brothers and sisters may have to understand what is happening to their parents and to make decisions. In some situations, it is clear who will decide and how. In others, there are too many options, too much friction, and too little practice in making decisions together (and the patient and the family suffer for it). Think about how your family operates. Could you make a decision about a business matter without one of you being in charge? Are you still arguing about what to have for lunch when it's time for supper? Do you tolerate one another's shortcomings and habits or annoy one another endlessly?
How your family and closest friends unite is something that they and you can plan. Perhaps it will be best for you to make many decisions in advance, or to name one person who has final authority. Perhaps it will be fine to let things go, trusting them to work out. However, it is usually best to check out ideas with each other first. Let your family learn to pull together on some early issues that really don't matter too much. Rather than letting the first family decision be something shattering, like selling a family home or stopping a ventilator, start by figuring out how to make decisions on which doctor to stay with, or whether to take a trip.
Reflect a bit on how the family is working and how it will do without you. Encourage family to think about who will fill some of your roles. If you are the one who always remembers birthdays or hosts the celebrations, encourage others to start doing these things. Offer advice, or share your address book or calendar. If they say that this is uncomfortable while you are still alive, be glad to keep the role while you can but be gently forceful about passing it along, too. Remember, these are the same children who were so eager to learn to drive, get a place of their own, or stop calling if they were going to be late. They can take on some of your responsibilities now when you are ready for them to.
Sometimes families really are too distant, either emotionally or geographically, to work together. Instead, hope for some camaraderie and contact. In addition, of course, some people have no family or friends at all and rely on volunteers and health care providers.
At times, families and loved ones get into fierce disagreements over the treatment of a seriously ill family member. All too often, a caregiving family member pitted against a distant family member who may feel guilty for not "being there." If there has been a history of feeling left out, arguing, or providing an unfair share of caregiving, there can be deep resentment, too.
Often, family members need some perspective. Starting a conversation with a prayer, if that is in your tradition, may set the right tone of humility, service, and working together for something important. Turning to a professional for help is also worthwhile. A chaplain, social worker, nurse, or doctor may be able to listen and advise. It is not as important to be "right" as much as it is to be dedicated, helpful, and forgiving.
How to take care of your estate |
One of the best things a person can do is to prepare for the inevitable. It is important that you get your affairs in order while you have the faculties to do so. Contact an attorney and get some advice on what is the best solution for you.
What do I do with all the bills (utilities, insurance, taxes etc.)? |
The answer to this question probably depends on what state/province you live in. I'd suggest contacting the cancer center where the patient is being treated. They're likely to have a social worker on board who can help you walk through the steps required.
Should I prearrange the funeral? |
Before the patient becomes too ill or unable to concentrate it is advised that they write or dictate a letter of direction. In it, the patient defines any final wishes. This could include organ donation, funeral home, cremation or burial, speakers, music, etc.
Make advance funeral arrangements. Do not wait until after death to make these arrangements. There have been reports of very bad experiences at funeral homes by the family of the deceased. Some funeral homes may force you to listen to graphic and detailed descriptions of cremation in an effort to sell you a more expensive casket burial. Unfortunate story, but true.
How do I get my affairs in order? |
Get your affairs in order i.e. will, DNR order, medical power of attorney, etc.
In Canada try http://duhaime.org/Will/ca-power.htm An Introduction to Powers of Attorney in Canada, or http://www.attorneygeneral.jus.gov.on.ca/english/family/pgt/ The Office of the Public Guardian and Trustee is part of the Family Justice Services Division of the Ministry of the Attorney General, Ontario, Canada.
In the U.K. try http://www.cancerbacup.org.uk/info/dying/dying18.htm or http://www.laterlife.com/index.shtml?http://www.laterlife.com/laterlife-legal-information.htm
In the U.S. try http://moneycentral.msn.com/content/Retirementandwills/Planyourestate/P34947.asp or contact a local attorney.
End-of-life decision-making |
These are factors to include in EOL decision-making:
· Constructing a care plan that includes patient centered goals of care.
· An approach to decision-making for a capable or incapable patient.
· The role of advanced care planning.
· Be able to assess capacity in terms of EOL decision-making.
· Elements of consent.
· Use of life-sustaining treatments.
· Ethical issues in the use of advanced directives including DNR orders.
· Withholding and withdrawing of therapies.
· Effects of personal and professional experiences of death and dying.
· The ethical and legal role of substitute decision makers in EOL decision-making.
· Issues in euthanasia/assisted suicide.
· Caregiver stress.
How can comfort of terminal patients be improved? |
Hospice is a special concept of care designed to provide comfort and support to patients and their families when a life-limiting illness no longer responds to cure-oriented treatments.
Hospice care neither prolongs life nor hastens death. Hospice staff and volunteers offer a specialized knowledge of medical care, including pain management.
The goal of hospice care is to improve the quality of a patient's last days by offering comfort and dignity.
Hospice care is provided by a team-oriented group of specially trained professionals, volunteers and family members.
Hospice addresses all symptoms of a disease, with a special emphasis on controlling a patient's pain and discomfort.
Hospice deals with the emotional, social and spiritual impact of the disease on the patient and the patient's family and friends.
Hospice offers a variety of bereavement and counseling services to families before and after a patient's death.
What is involved in anticipating and preparing for medical care of the terminally ill person wishing to die at home? |
This document is a good source of information about Common Clinical Challenges in the Care of the Dying in the Home http://www.palliative.info/resource_material/Home_Death.pdf
Clinical problems addressed are:
· Inability to transfer to a toilet, commode, chair, bed.
· Decreased food intake
· Decreased fluid intake
· Inability to swallow medications
· End-stage delirium (confusion, disordered speech, and hallucinations)
· Dyspnea (difficult or labored respiration) in the final hours/days
· Terminal Secretions ("Death Rattle" a rattling or gurgling sound produced by air passing through mucus in the lungs and air passages of a dying person)
What are the symptoms of end-of-life? |
Patients at the end of life experience many of the same symptoms and syndromes, regardless of their underlying medical condition. Pain is the most obvious example, but others are difficult breathing (dyspnea), transient episodes of confusion and loss of concentration (cognitive disturbances and delirium), loss of appetite and muscle wasting (cachexia), as well as nausea, fatigue, and depression.
"It hath often been said, that it is not death, but dying which is terrible." Henry Fielding, Amelia, 1751
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