Friday, January 18, 2013

Cancer 101: Dealing with Mucositis

Late Wednesday night I received a comment on a prior post asking me a few questions about having cancer and being vegan. My gut reaction was to respond to this person individually.  However after I gave it a little thought I realized that given the current statistics regarding the rate of cancer incidence in this country (1 out of 2 men and 1 out of 3 women will be diagnosed in their lifetime) I needed to write something that would be easier for people to find.  You know what that means right?  Yup, another series will be added to the list. This one I am calling cancer 101 and I will start with Susan’s question which I think needed to be responded to first.  She wanted to know how you eat when you have mucositis (mouth sores) from chemo and radiation?  First I will describe what mucositis is and then what to do and not do if you or someone you love has it.

What is mucositis and why does it occur?

The word mucositis simply means an inflammation (itis) of the mucosal lining (mucus).  However calling it an inflammation of the mucosal lining makes it sound almost benign and it is extremely painful and can be dangerous.  This inflammation can take the form of a painful and/or dry mouth, mouth sores, burning, peeling or swelling of the tongue.

The statistics indicate that 40% of patients receiving standard chemo will develop mucositis. However mucositis is not limited to patients getting chemo.  Other cancer treatments (radiation and targeted therapies) also can cause mucositis.  Bone marrow transplant patients can also have problems with mucositis.

Your entire gastrointestinal tract is lined with mucosal cells.  These cells produce mucus which helps protect the lining of your GI tract.  However these cells turn over quickly and need to be regenerated.  Cancer meds, chemo and radiation are working to do the opposite. They are trying to slow the growth of the cancer and that also slow the growth of your healthy cells. These mucosal cells regenerate about every 5 days and that is also the time frame where mucositis tends to turn up.

Symptoms of mucositis include but are not limited to:
  • Painful open sores in the mouth
  • Difficulty opening your mouth
  • Painful fecal elimination (no spicy food)
  • Difficulty swallowing
Sounds like a party does it?   It is as actually as bad as it sounds or worse.  Severe mucositis can increase infection rates resulting in the need for intravenous nutrition, higher level pain medications (opiates) and the increased risk of death.

Medication options:

Disclaimer:  remember that I am not a physician these are simply the suggestions of an informed medical consumer.  Please talk to your physician about your mucositis.

To relieve mild to moderate mucositis start with an OTC (over the counter) medication like Tylenol but check with you MD first.  If you have impaired liver function he may want you to use something different.  If you have severe mucositis see your doctor for stronger pain medications than Tylenol.

In addition to pills there are also prescription mouth rinses.  The most simple is a compounded (mixed at the pharmacy) product that the pharmacists call “magic mouthwash” which is a combination of meds.  Another option is Gelclair which is a gel designed to stick to the inside of the mouth. It contains licorice extract, an herbal remedy long used for mouth sore.  There is another mouth rinse called Caphasol. This is a two part product that you mix just before use.

All of these products have been in our medicine cabinet and honestly they didn’t work great but Caphasol is the best of the three but it isn’t cheap.

You can try lozenges of slippery elm which you find at the health food store. Another option is aloe vera which you can also find at the health food store.  We tried the slippery elm and it didn’t seem to help here but it may help you.  The aloe we tried using by adding a couple of ounces to smoothies. We can’t say if it helped or not, but it didn’t seem to hurt.

There is some research that using glutamine (an amino acid) prevents mouth sores. You mix 20 grams of glutamine with 16 ounces of water and swish and swallow this every hour when you begin treatment (chemo, etc).  Early results show this might help prevent mucositis.  Again, check with you doctor to make certain he/she is okay with this.  We haven’t tried this so I can’t tell you if it is effective or not.

(frozen grapes to use like ice cubes) 

(peach, banana and almond butter smoothie)

(curried carrot soup - just use a mild curry and skip the garnish)

What to consume when dealing with mucositis:
  1.  Eat soft, moist, non-acidic foods. Example of this would be: bananas, applesauce, melons, non-acidic fruit juice (peach, pear, apricot), soup, oatmeal, pasta, soft grains, pureed or mashed foods, tofu, and cooked beans.
  2. If you have a blender you can also make smoothies or pureed soups.  Specifically I would recommend smoothies with banana and mango or banana and peach.  Do not include pineapple or berries in your smoothies if you have mucositis they will be painful.  For the pureed soups I would suggest things like creamy carrot, butternut squash, sweet potato, fresh pea or any of the split pea soups which you have pureed.
  3. Cook food well, or until soft and tender. Cut into small pieces or puree.  If you want texture you can use a potato masher, but I would say go with completely smooth.  You can substitute baby food if you don’t feel like cooking, blending and smashing.
  4. Add gravy and sauces to things to make them easier to swallow.  You could use my queso dip as a sauce (omitting anything remotely spicy or acidic) or my creamy mushroom gravy.
  5. Try frozen fruit juice pops, frozen grapes or non-acidic fruit sorbets.  Sucking on ice chips can also bring some relief though no nutrition.
What not to consume when dealing with mucositis:
  1. Anything hard (think crackers, seeds, nuts)
  2. Acidic items (things like tomatoes, vinegar, and citrus)
  3. Spicy foods (anything hot or even mildly hot is a bad idea)
  4. Things you need to roll around on your tongue to swallow (basically anything with structure). The only exception to that in my mind is frozen grapes.
One caution I would give regarding mucositis is not to wait too long before going to the doctor.  It is important to avoid an infection. If you think you have mouth sores contact your doctor.  After that try these self help tips and puree your food if it hurts to eat. It is important to stay nourished when you are battling cancer.

Happy thoughts:
  1. Dan is still feeling better which is a huge relief. Judging from his late nights at work he must be feeling almost back to normal.  ;-)
  2. Our baby has become the sweetest little love. Every day he comes to see me and demands “loving”. This might not sound like a big deal but this is the same cat who never wanted to be touched when we first brought him so this is huge. It is nice to have a snuggly cat in the house.  Nicco only had to turn 11 to become one.  LOL
  3. Sometimes things happen with friends and someone says something and the other person misunderstands and suddenly the friendship is over.  However you know someone is meant to be in your life when they stick around long enough to talk and sort things out.  Just letting you know how much you mean to me and you know who you are.  ;-)  Thank you for caring enough to work things out.  
  4. This is another big shout out to my buddy Matt who is kicking butt when it comes to give up the cigarettes and now the animal products.  Go Matt!  I am sending major (or in your case sergeant) kudos your way as well as big hugs.  You are a rock star! I am so thrilled for you.  J
  5. It looks like we are finally going to see Walid and Jackie. I am so psyched!  They are so much fun I can’t wait to have dinner with them.
  6. We are almost to the weekend. Can you believe that it is already Friday?  I can’t wait for a little time to relax.  I hope you have something fun planned.  J
Signing out:

This has been a long week.  It has been good to have Dan almost back to normal. I am also looking forward to a little time to unwind this weekend.  Let’s hope we can all squeeze in some fun this weekend.  *fingers crossed*

I will chat with you again very soon.  Arrivederci.


  1. Wow. I had no idea the cancer rates had become that high. That's terrifying. I have suffered from canker sores and cold sores (which, obviously, are nowhere near as bad as mucositis), but I find that l-lysine helps, as does vitamin E topically on the lip ulcers. I don't know if either are options for cancer patients, but I thought I'd share just in case it was helpful.

    1. Hi there Brigid,

      Those stats are terrifying. That is exactly why I included them. I had no idea it was that bad until it happened to us. Hopefully people are starting to be more aware. *fingers crossed*

      Great suggestions about what you do for canker sores. I will definitely look into how that works for mucositis. Thank you so much for sharing it. You are a love. :-)



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