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Coping With Oral Mucositis: How to Relieve the Pain and Eat Properly

Updated on June 28, 2017
Johannes Jorma profile image

I'm a penultimate-year medical student. I started writing about health as a way to help people understand their medical conditions.

Introduction

Oral mucositis is a common complication of chemotherapy, in which the mucosal lining inside the mouth begins to break down, and ulcers begin to form.

It is very important to maintain adequate nutrition during chemotherapy. Treatment with chemotherapy is immunosuppressive—meaning that it weakens your immune system. If you do not maintain adequate nutrition, your white blood cell count will not recover as well, which can leave you at higher risk of opportunistic infections.

In this article we will explore various treatments and lifestyle changes that will help you cope with your condition and help you to eat again. The key points we will consider are summarised below:

  • There are gels and numbing agents that can provide relief and make eating easier.
  • Changes to food choices and eating habits can help ease the pain.
  • The goal is to get as much nutrition and calories in each swallow as quickly and painlessly as possible.
  • Lifestyle changes can improve the condition and reduce the pain and impact on quality of life.
  • Changes in diet can help you eat more.
  • Infected ulcers must never be ignored. They are not normal and can lead to sepsis. Seek medical attention from a doctor or consultant immediately.
  • The most severe cases - which render eating totally impossible - may be managed with parenteral nutrition subject to serious potential side effects and health risks.

Warning

If you start to experience extreme pain (much worse than usual) in your ulcers and you believe one or more of your ulcers has become infected you must contact your doctor immediately. Infected ulcers can lead of sepsis. If this is not treated the condition can become life threatening.

Easing the Pain When You Speak

Text to speech software reduces the amount of talking you need to do. For example, instead of asking for a cup of tea you could simply type "can I have a cup of tea" and press play on your phone or laptop and it would say it for you.

This may feel a little strange at first and will make you feel quite disabled. However remember that you are able to talk if you want to but you just choose to do this as it is more comfortable.

You will also find that the pain associated with your condition fluctuates (peaking after treatment) so you may only wish to use these tips when your condition is at its worst.

Pain Management

The good news is that your pain should get better a few weeks after each course of treatment, so there is hope that you will get past the peaks in the pain in time. However this provides little comfort during flare-ups, or when you know that you have got treatment coming up soon.

When it comes to painkillers, simple household, over-the-counter painkillers are not sufficient. Your doctor should be able to prescribe stronger medications that will help. Typically palifermin is used for oral mucositis and is effective in reducing the severity of your pain and duration of the condition. Palifermin is administered intravenously in a hospital. Other prescription painkillers will also be considered by your doctors and these will be weighted up against the risk of addiction and other side effects.

Beyond simple painkillers, there are gels and numbing agents which, when combined with standard pain management, can significantly reduce the pain and discomfort experienced.

Lastly it is always a good idea to keep a look out for clinical trials running in this area as you may be able to take part. Furthermore a drug called GC4419 is currently in clinical trials and is potentially promising.

Tech Help

These programs are free to use and easy to find online. You can also download free apps onto your phone which covert text to speech.
These programs are free to use and easy to find online. You can also download free apps onto your phone which covert text to speech.

The Humble Ice Cube

One of the strangest ideas for which there is evidence of effectiveness is - believe it or not - sucking on an ice cube (doctors call this cryotherapy). By sucking on an ice cube you can constrict the blood vessels which could possibly reduce the effect of chemotherapy on the mucosa. Currently the best evidence is for a specific type of chemotherapy called 5-fluorouracil bolus or melphalan based chemotherapy.

Therefore, amazingly, sucking on ice cubes for half an hour prior to treatment could help reduce the severity of the mucositis you develop. You may wish to discuss this with your oncologist prior to chemotherapy for guidance on its effectiveness.

Numbing Gels To Help You Eat and Swallow

To stay alive we all need to eat. However, for cancer patients it gets worse as they also need cancer treatment to keep them alive, which can leave them with nasty side effects including, of course, oral mucositis. Patients have been known to lose weight with the condition and restrict food intake. Some have even been known to take days off eating because the pain is so bad.

The good news is that there are products available that help specifically with the eating process. There are various products that provide relief by coating the ulcers and/or administering an aesthetic that numbs the pain. In many of these products the active ingredient is 2% viscous lidocaine which numbs the tissues in your mouth and thus reduces pain. In the US these are sold under brand names such as Maalox or Kaopectate. In the United Kingdom the dominant product is marketed as Gelclair which works slightly differently as it does not contain an aesthetic but is effective in coating the mouth which should significantly reduce pain if used prior to eating.

Should more pain relief be required you may also consider a 2% morphine mouth rinse and 0.5% doxepin. These are only available on prescription from a doctor.

Lifestyle Changes to Consider

As with everything in medicine, lifestyle factors are involved and making changes to your lifestyle can improve or worsen a medical condition. Mucositis is no different.

Let's start with the first one. You must stop smoking. Smoking will make your condition much worse and severely irritate your oral mucosa. Furthermore smoking greatly reduces the effectiveness is your cancer treatment. Additionally smoking seriously harms your oral hygiene which makes oral mucositis worse.

Maintaining good oral hygiene is a good first step which has a noticeable effect on the severity of mucositis. However maintaining oral hygiene with oral mucositis can be challenging. Nonetheless it is important to remember that deteriorating oral hygiene can worsen your mucositis and further increase the pain in your mouth if you go on to develop dental conditions such as tooth ache. The easiest way is to use a soft tooth brush combined with inter-dental brushes to get into the cracks. A consultation with your dentist is a great idea - they may also be able to carry out a professional clean if possible.

When it comes to diet you need to be careful about what you eat. Some foods you should avoid include:

  • Sharp foods (e.g. crisps)
  • Spicy foods (no hot curry)
  • Foods that are high in salt (will dry out the mouth worsening your condition)
  • Dry foods (maintaining moisture in the mouth is very important)
  • Hot meals (heat irritates the mucosa)

Many patients with mucositis are unable to eat solid food at all and move to eating liquidised food. The fundamental goal is to consume as many calories as possible with as much nutrition as possible. It is a very good idea to consult with a dietitian who can help create liquid meal plans which are calorie dense while also containing all the nutrition you need to aid your recovery from treatment.

Blending Nutritious Food is a Great Idea

Blended foods deliver maximum nutrition and calories in every gulp.
Blended foods deliver maximum nutrition and calories in every gulp.

Oral Decontamination

There is very good evidence that good oral hygiene reduces the severity of oral mucositis. As a result, patients should, ideally, undergo a thorough oral decontamination prior to chemotherapy.

However, failing this it is still a very good idea to meet with your dentist to discuss how you can improve your oral hygiene and various oral decontamination routines. It may not be possible to carry out a professional cleaning due to your condition; however, if your symptoms reduce to the point where it is tolerable, this is worth considering.

You could also discuss systemic fluconazole with your dentist and doctor as this has been shown to reduce the severity of mucositis; however, it is not without its side effects, so care should be taken.

You Are Not Alone

Cancer Treatment
Incidence of Oral Mucositis
Radiotherapy for Head and Neck
Almost 100%
Hematopoietic Stem Cell Transplantation
~80% (8 out of 10)
Standard-dose Chemotherapy
~40% (4 out of 10)
Oral mucositis is very common among cancer patients. This table shows the incidence by treatment type.

Tube Feeding

In some cases where eating becomes simply too painful, a feeding tube may be considered. It is all about working out what is best for you. Is eating more painful with the condition or is a tube more uncomfortable? You will need to work with your doctor to make the best decision for you.

This decision will also vary depending on where you are within your treatment cycle. Many patients will opt for tube feeding when their condition is at its peak—and will then return to normal when they begin to recover.

Parenteral Nutrition Option

The most extreme treatment, which doctors use in cases of very severe oral mucous, is parenteral nutrition (feeding via a needle). Please note that this is a very extreme option and would only ever be recommended by a physician in extreme cases. The physician would weigh up the pain of your mucositis with the debilitating effect of parenteral nutrition and very significant side affects associated with it. In the majority of cases, a physician would not advise this. However, the side affects are less than the discontinuation of cancer treatment in non-terminal cancers (i.e., treatable or potentially treatable), and this would also be weighed up.

Fundamentally parenteral nutrition involves feeding the patient intravenously (though a needle) and thus provides the patient with nutrition while totally bypassing the mouth and throat (and hence all of the ulcers). In other words, the patient is being fed while in bed on a drip. The actual feeding takes place over a very long period (over 10 hours per day) and leaves the patient bedridden. The food provided is simply a formula of essential nutrients and vitamins and is not food in the conventional sense.

The main argument against this in all but the most extreme cases is the side affects. Firstly, despite the fact that the body is receiving nutrition, patients can expect to feel intense hunger pains as a result of not physically eating for extended periods of time. With parenteral nutrition comes a much higher risk of infections, which can potentially lead of life threatening sepsis. Furthermore, there is also a risk of blood clots, which has to be managed carefully.

Long-term usage (several years) of parenteral nutrition can result in very serious heath problems, such as liver failure.

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