Side Effects - Oral

Welcome and Introduction

The author of the oral health and cancer treatment pages is Maxine Brings Him Back Janis, RHD, MPH, Oglala Lakota; cancer survivor;  assisted by Linda U. Krebs, RN, PhD, AOCN, FAAN and Linda Burhansstipanov, MSPH, DrPH, Cherokee Nation

Jared, Please insert Maxine's photo, PATIENTS_NACES/Survivors/Maxine-full-regalia.jpg  this is the link to the photo.  The omnia website will not move the photo online. 

 

 

Metakuya (Relatives), Welcome to the oral (mouth/throat) section of the Side Effects Branch on the NACES Quality of Life Tree.

Purpose:  To help you understand what happens in the mouth when you have radiation and/or chemotherapy treatment.

Do all chemotherapy drugs cause mouth sores during treatment?

1. Yes
2. No

ANSWER:  "No - Some, but not all … nor do most drugs cause mouth sores.
Talk with your healthcare provider for more information.

This branch explains how and why you may have problems (body, mind, emotions and spirits) while you are going through cancer treatment. Problems in your mouth or throat affect many cancer patients. This oral (mouth/throat) section will show how other Native American cancer patients managed their side effects. You can learn to manage yours too.

• The mouth and the throat are important to your overall health and wellness and quality of life.
• They help us keep our body strong and provide nourishment to all our cells. 
• If you have sores or dryness in the mouth and throat, this will affect the wellness of the rest of our body.
• This is why it is important to understand how we can be in harmony physically, mentally, emotionally, and spiritually even with the challenges of cancer treatment.

In order to understand the oral side effects and problems that can be caused by cancer treatment, it is important to see a picture of the mouth and throat so that you can understand oral health, cancer care and you.

Medicine Wheel:  The Body and Oral Side Effects

Radiation and chemotherapy often harm healthy cells anywhere in your body.

• You may notice some pain and sores in your mouth and throat during your cancer treatment.
• Remember that side effects may not be the same for you as they are for another cancer patient.
• These problems may change from one cancer treatment session to the next.
• Most oral problems will get better when the cancer treatment ends.

EXAMPLES of how to manage oral side effects during cancer treatment

• Mouth dryness (not enough saliva). You need saliva (spit) to swallow. You need to drink a lot of water or other nutritional drinks. This will help in keeping your mouth moist.
• Mouth sores. 
  • If you have open sores in the mouth from the cancer treatment, make sure you still nourish your body with healthy soft foods.
  • Any foods can hurt if you have a lot of mouth sores.
  • You can ask your cancer care team what foods are best for you to eat.
  • Open sores in the mouth and throat can hurt with swallowing, drinking and eating foods.
  • Even eating white bread that is usually gentle on the mouth can hurt.
  • Any food that is large and bulky will be hard to chew.
  • It is important to have food cut into small bites. This will make it easier to swallow.
• Food tastes bad
  • Because there may be damage to the
    • Taste buds,
    • Sense of smell,
    • Limited saliva (spit) in the mouth.
  • The mouth dryness makes it hard to move the food around in the mouth to chew.
  • The taste buds and the sense of smell are what make food taste good or bad.
    • When these don't work the way they should it is hard to eat. This makes the eating unpleasant.

Why do some patients get mouth sores and others do not?

"Risk Factors" refer to behaviors / exposures to something that increases your changes of having a problem. The more risk factors you have are related to the severity and length of time you have the oral problems.  

Risk Factors for oral problems can be due to the type of treatment:

• High dose chemo, radiation, or chemoradiation delivered to the head or neck will usually have oral problems
• The higher the number of chemo treatments the more likely you are to have oral problems
• The types of chemo drugs (5-FU, cyclosphosphamide, methotrexate, cisplatin) can increase your risks

Patient-related risk factors:

• Neutropenia (noo-troe-PEE-nee-uh) is an abnormally low count of neutrophils, white blood cells that help your immune system fight off infections, particularly of bacteria and fungi. You have several types of white blood cells, and between 45 and 70 percent of all white blood cells are neutrophils … Severe neutropenia - fewer than about 500 cells per microliter of blood - bacteria normally present in your mouth and digestive tract can cause infections. 

      http://www.mayoclinic.com/health/neutropenia/MY00110, cited 01-12-2012)

• Poor oral hygiene
• Impaired salivary function
• Use of alcohol and tobacco
• Poor nutrition
• Age (children and elders are more likely to have oral problems)
• Genetic factors

• Patient-related risk factors:
  • Neutropenia (noo-troe-PEE-nee-uh) is an abnormally low count of neutrophils, white blood cells that help your immune system fight off infections, particularly of bacteria and fungi. You have several types of white blood cells, and between 45 and 70 percent of all white blood cells are neutrophils … Severe neutropenia - fewer than about 500 cells per microliter of blood - bacteria normally present in your mouth and digestive tract can cause infections.    http://www.mayoclinic.com/health/neutropenia/MY00110, cited 01-12-2012)
  • Poor oral hygiene
  • Impaired salivary function
  • Use of alcohol and tobacco
  • Poor nutrition
  • Age (children and elders are more likely to have oral problems)
  • Genetic factors
  • Gender (women are more likely to have oral problems than are men)

Modified from Sonis et al (1999) Barasch et al (2003), and Brown (2010), as cited in J Adv Pract Oncol 2011.

What is radiation treatment?     

• Radiation treatment (also called radiation therapy) is the process by which high energy radiation is used to kill cancer cells and shrink tumors.  
• It damages the blood vessels going to the tumor.
• Tumors are less able to repair DNA damage than normal cells or can be starved for food and oxygen, leading to cell death.
• Treatment to the head and neck area can result in mouth sores or decreased saliva that can both cause pain and discomfort that makes eating and swallowing difficult. 
• The damage to these tissues and glands depends on the amount and kind of radiation used, the total dose, and the size of the area getting radiation.
• Damage caused by radiation therapy affects the tissues for the rest of the patient's life. 
• The hard and soft tissues inside the mouth are more easily damaged after treatment has been completed.
• The normal ways of cell repair do not work as well once cells have been exposed to radiation.
• Side effects from radiation treatment are usually caused by soreness to skin in the treatment area. 
• The special dental considerations surrounding after-treatment care last forever. 
• However, most of the side effects caused by radiation therapy resolve in time after completion of treatment. 
• The tissues inside the mouth and throat are very tender to radiation treatment. 
• The salivary (spit) glands inside the mouth are especially sensitive to radiation treatment.

What can I expect?

• Your radiation doctor will discuss any side effects that could become permanent after the treatments are completed.

AI/AN survivor who requested to remain anonymous:  "My main thing to do this video is to help huh, other natives and cancer patients to… kind of know what they're getting into when they get throat cancer.

First I had chemotherapy. My treatments were 24-hour treatments for seven full days and then I had a few weeks off; then I go in for another one I did this five or six cycles…Then I went, went back and he [the provider] said we are to have to do radiation on you. So l went through the full 26 cycles of radiation.

I've had many side effects. I lost my teeth. I almost had to have my tongue removed but because of the radiation. My jaw deteriorated so last September I went to the University of Washington in Seattle, and I had to have huh a bone removed out of my leg and replaced it my jaw to replace the jawbone. …it does affect a person a heck of a lot. Especially, if you have to live the rest of your life as I do with our own considerable amount of disfiguration because of possible surgeries.

During my treatment phase, I did a lot of native medicines along with scientific stuff that the doctors were doing.

I just want to be an example to other Indian people and to mainly help our younger people that their way of life has a lot to do with. If you put yourself at risk of contracting this disease because of the life I lead up to my diagnosis was not too good. I was…I was heavy into alcoholism, and I chewed Copenhagen for approximately 38 years. So apparently this is the combination of the two according to the doctor is what caused my cancer. "

Why am I having discomfort and pain?   

• The discomfort and pain affects each person differently. Cancer related pain depends on both mind and body factors. 

• Mouth-related pain can result from having head or neck cancer. It is also a likely side effect of radiation or chemotherapy.

• How you have felt pain in the past, your age, personality, and other things can influence how you manage any pain.

How can I reduce the oral problems?

• Your dental professional (dentist or dental hygienist) can provide proper dental care and education prior to cancer treatment to reduce oral problems in your mouth.
• It will be important to schedule a dental appointment before you start cancer treatment.
• Keep and use lip balms like BURTS beeswax because it naturally moisturizes the lips.
• Stay away from spicy foods like chili and acid drinks like orange juice as they may bother your mouth.
• You will want to get yourself saliva substitute product like BIOTENE to help stimulate saliva (spit) flow and moisturize the mouth.
• Keeping your mouth and body hydrated is very important. Drink liquids like water, Gatorade, vita water (ask your nutritionist what would be best).

What is chemotherapy treatment?   

• Chemotherapy is the general word for any treatment, which involves the use of chemical agents (medicines/drugs) to stop cancer cells from growing.
• In general, chemotherapy uses drugs that travel through the bloodstream to reach and affect cells all over the body.
• Chemotherapy is a helpful way to treat many cancers. Chemotherapy can get rid of cancer cells at sites far away from the original cancer.
• As a result, chemotherapy is considered a systemic (affecting the entire body) treatment.
• For example, a systemic disease such as diabetes can affect the whole body during cancer treatment.

 

AI/AN survivor who requested to remain anonymous: I really hated chemotherapy; you can just feel it all over your body you can taste in your mouth.

[ed. My grandma] used dry stink weed with little bit of water and should put it in her mouth. Like chewing tobacco chew on it and swallowed the juices, and I decided to try it. I just wanted to try it.

I find that traditional medicine cured my esophagus, what the… what a normal medicine couldn't do today. I don't even drink my coffee in the morning. The first thing I do is drink my stink weed. And if I have no time to make like when I'm traveling I bring a bag with me and I just chew it and drink the juice. It really does work. These people who have experience with this made me a believer I never used to believe. I believe because it worked on me."

What can I do to help my body heal?

• It is important to listen to your body while going through cancer treatment.
  • Remember, you are one with your body, mind and spirit. The act of remaining in harmony is very important.
• Remain mindful to your body and practice ways to bring healing. 
  • One example could be learning to breathe deeply.
  • You can begin doing this for 5 to 10 minutes, three to four times a day.
    • First, close your eyes and get in a comfortable position.
    • (1) Relax your neck and shoulder muscles,
    • (2) Breathe in for two seconds through your nose, keeping your mouth closed,
    • (3) Breathe out for four seconds through your mouth.
    • After doing this exercise you will become aware of how your neck and shoulders start to feel soft when you move your body. This exercise will help get more oxygen to your body and help you relax and start the healing process.

• The journey thorough healing will be much faster if get to know your body.

• R emember, you will make the road to healing by walking.

Medicine Wheel:  The Mind and Oral Side Effects

How is my mind affected by the mouth discomfort?

• The mind is powerful and has the power to control our very being. The mind controls our state of "being".
• One of the ways to remove the effects of bad mouth discomfort; you might think about how the mind (mental state) can be controlled.
• Being afraid and anxious can make your pain worse. Learn more about what you can do for oral / mouth health. Education helps reduce the fear and feelings of anxiety.
• Strive to develop every part of the mind and body. Doing this will create a higher order of personal and mental states.
• For example, try to make a place in your mind that is opposite to oral discomfort.

How does my mind help me cope with mouth problems?

It is important to get your dental care done before you start cancer treatment to insure you are able to eat and stay strong.

There can be common eating problems during cancer care, especially with oral cancer. They can include: sore mouth, changes in taste, dry mouth, sore throat, and trouble swallowing.

Because you may notice some of these common problems it is important to talk with your doctor or dental provider.

• The more positive one's attitude, the more one is able to cope with the oral side effects of the cancer treatment.
• Being positive will allow you to manage the oral problems that may arise.
• As one cancer patient states: "I survived because I kept hope alive!!! Live, laugh, love and keep fighting"

How can I use my mind to help me remember to take my pills when I have mouth problems and it hurts to take them?

• It is helpful to keep your medicine in a pillbox at a central place.
• It is important to be mindful of when you take your pills staying on a schedule is very helpful. If you need help, ask for help.

How does my mind help me learn which foods are or are not okay for me to eat while I am in treatment?

• It is important to get your dental care done before you start cancer treatment to insure you are able to eat and stay strong.
• There can be common eating problems during cancer care, especially with oral cancer. They can include: sore mouth, changes in taste, dry mouth, sore throat, and trouble swallowing.
• Because you may notice some of these common problems it is important to talk with your doctor or dental provider.

Medicine Wheel:  Emotions and Oral Side Effects

What can I do to understand my emotions related to oral pain?

• First, if you are having oral pain, make sure you talk to your cancer care team. They can help you.
• Next, try to think about what makes you emotional. It's okay to feel these emotions.
• Remember, feel the emotions and walk these emotions through to the other side of your mind. It's like letting them in the door of your mind and walking them out the other door and setting them free. It will take practice.

How does oral pain cause me to be moody, angry, and easily annoyed?

• Because of the pain you may irritable, you can walk through this irritability if you continue to stay connected to your spirit.
• Breathe deeply and meditate.

How can I achieve emotional balance while experiencing oral problems?

• Emotional ups and downs are normal during this time.
• It is important to work through these times with an understanding of the triggers that cause these ups and downs.

Medicine Wheel:  The Spirit and Oral Side Effects

How can I understand more deeply my inner spiritual being?

• As we look at the medicine wheel, all of the four directions always return us back to center, that place of harmony and balance.
• Visit the medicine wheel to grow deeper in harmony.

How can the Creator help me cope with the oral discomfort?

• There are may be ways you can cope with the many challenges you will face during this time.
• Many tribal people ask the Creator, through ceremony and prayer, to give comfort.

What types of traditional medicines might help me with my mouth/throat sores?

• Although there are traditional medicines that may be helpful, it is very important to trust your traditional healer and his/her practices, but also work with your (Western Medicine) doctor.

What types of traditional drinks and foods need to be made by my healer before I take them?

• When you are considering traditional medicines and foods you will have to make the decision of what feels comfortable for you as you talk with your traditional healer about your needs.

Common Patient Questions (and answers) about Oral Side Effects

Do all cancer treatments cause mouth and throat sores? If not, can I take the ones that do no cause mouth and throat sores?

• No, not all cancer treatments cause mouth and throat sores. However, some chemotherapy medicines will cause mouth sores.
• You should ask your doctor if the chemotherapy medicine you will given is one of those that will cause mouth sores.
• If radiation is given to the head and neck area, mouth and throat sores and pain are common.
  • It will depend on how long your radiation treatment lasts and the dose amount that you will receive.
  • The length of time of the mouth sores varies with each person.
• Your healthcare provider will decide which cancer treatment that will be best for you.
• Always talk to your healthcare provider if you have questions or you don't understand, he/she is there to help you through this challenging time.

How can I maintain my body weight and eat if my mouth and throat hurts and is hard to swallow?

• There are many nutritious foods which you can eat.
• Stick to foods that are soft (such as pasta or pudding), nutritious drinks/shakes; stay away from crusty (toast, hard cookies) and spicy foods and acidic drinks (orange juice).
• Even though it hurts, it is very important to eat highly nutritious foods.

How long does it take for the mouth and throat sores to go away after my cancer treatment is done?

• Everyone heals differently.
• If you are receiving radiation therapy, sores will not begin right away and may not go away until 6 months after treatment is ended.
• If you are receiving chemo, whether or not to get mouth sores depends both on the type of chemo drugs you get how your low your white count gets during your therapy. Mouth sores usually heal between cycles of therapy.
• It is important to talk to your cancer care team about medicine that can help with mouth and throat sores.
• This includes talking with your dental provider.

I have bad teeth and gums. Will the cancer treatments hurt my mouth or damage my weakened teeth?

• Yes, there is a possibility the radiation treatment could damage the weakened teeth. This is because the blood becomes restricted and less able deliver nourishment to the vital (live) teeth.
• To battle cancer treatment best you must include regular visits to the dentist and dental hygienist as part of your cancer care.
• It is very important not to start treatment until you have received dental treatment for your bad teeth and gums.
• Keeping the dental provider in the circle of care will help protect your mouth, teeth, and jaw bones during cancer treatment.

Will the mouth and throat sores upset my stomach?

• The mouth and throat sores usually will not upset your stomach.
• The upset stomach could be from the chemotherapy medicines.
• You will have to be more aware of the foods you eat because of the sensitivity of your mouth.