Well, so much for Afinitor. I’m already off it for a week because of mouth sores. My oncologist is going to reduce the dosage in hopes that we can still try it. I don’t really have a lot of hope for this drug because, if you read my post “My Cancer Fight is on to plan C and a New Drug“, it seems to be mostly targeted for carcinoid patients where the origin of the cancer is in the pancreas. So, putting up with mouth sores from chemo is not exactly something I think I should have to endure. The only problem is that my oncologist said that he is running out of ideas and medicines.
Mouth Sores From Chemo
So, in my effort to help others, here is a bit of information about managing mouth sores from chemo. So, these things really snuck up on me. I didn’t see it coming. First, I developed a cough and then I started feeling like I was catching a cold…which I did. When I get run down sometimes I can get a mouth sore or two and I always rinse with a super saturated solution of saltwater and they usually go away or never develop. Not this time and now rinsing with saltwater is super painful. Forget water boarding….this would make me talk. 🙂
I’m Super Saturated – Do I get an S on My Shirt?
I wanted to include a bit about the salt water solution I rinse with just as an FYI for you. I won’t be using it now but, typically, I use it everyday. I take a pitcher of filtered water and pour about an inch or two of salt into it and let it sit. It will dissolve on it’s own so, there’s no need to stir. So, you might be wondering, what is “super saturated”? It is when the water contains so much salt that it can no longer absorb any more salt. If you see a layer of salt sitting on the bottom of your pitcher then you did it the right way. Don’t stir it because it won’t matter. The water is now super saturated (and can leap tall buildings in a single bound). After brushing, pour the liquid into a little dixie cup and swish, gargle etc. Make sure you really get it in there. I then wash it out with a rinse of fresh water because it tastes horrible. 🙂
I went from having cavities at every dental visit to having none. You’re killing the microbes with salt. If you are avoiding flouride then you should try this out….it worked great for me.
Mouth Sores From Chemo
OK, back to business. My mouth and throat are loaded with these things and my throat is just sore in general so, saltwater is out for a while. Let me cover the basics and then I’ll tell you what I’m doing to cope with the pain. Here’s a good definition from a great multi-page article.
Oral mucositis is a serious side effect of some cancer treatments. The term “oral mucositis” refers to mouth sores caused by irritation of the mucosa—the soft tissues that cover the tongue and inside of the mouth. These types of sores aren’t always found just in the mouth. They can also affect the upper part of the throat and other parts of the digestive system. Read More
One of the biggest things we need to be aware of is that these sores can get infected and so they recommend staying in touch with your health care team and dentist. They recommend that you continue taking care of your mouth and ask the dentist for alternatives to toothbrushes if needed. The article points out that it takes about a week for the mouth sores to develop and that’s about the amount of time it took for them to develop in my mouth. Unfortunately, it seems that they cannot be prevented but, they are supposed to fade away at the end of treatment.
Treatment of Mouth Sores From Chemo
Palifermin (Kepivance) is approved by the U.S. Food and Drug Administration (FDA) for people with blood cancers treated with stem cell transplant and high-dose chemotherapy.
“Cold therapy” is a technique that nurses devised for people receiving the chemotherapy 5-FU. Starting five minutes before getting the drug and continuing for about half an hour, patients suck on ice chips. Read More
Managing the Pain
Ice Cream – OK, here’s what daddy needs! 🙂 It’s exactly like ice chips. It numbs your sores and reduces inflammation except it’s vanilla flavored. HA! 😀
Ice Chips – Yawn…doesn’t hold a candle to ice cream but it gets the job done.
I haven’t tried it yet but honey is suggested by one doctor. You can watch it here.
Prescription pain medications – They suggest something called Gelclair, an oral gel, that coats and soothes mouth sores by forming a protective barrier in the mouth. I’m using something called “Magic Mouthwash” which has lidocane in it. It tastes delicious if you like the taste of cherry yogurt mixed with old sox. (Thank you peppa pig – my son’s favorite show.)
Prescribed Pain Relief – You can request various pain relief medications. I tried some over the counter stuff but they had no affect. There is even a fast-acting opiate called fentanyl citrate (Actiq) that is available in a berry-flavored lozenge on a stick. Oh yeah, these sound like they’ll do the trick. 🙂
Brush and Floss Gently – Use the softest bristle brush available or an oral sponge. You can rinse or soak the bristles in hot water to make them even softer. A mixture of half a teaspoon of salt with four cups of water can be a replacement for toothpaste. No salt if that bothers you.
Gargle regularly. Use a solution made up of one quart of plain water, half a teaspoon of table salt, and half a teaspoon of baking soda. If you must remove the salt I’ve seen articles suggesting that as well.
Drink Plenty – You don’t have to tell me twice! 🙂 OK, OK, they’re not talking about alcohol. Two or three quarts a day should keep you hydrated. Talk with your doctor or dietitian about the types of fluids you should drink. This will help you fight dry mouth which makes the sores much more painful. It’s been suggested that you avoid sugary drinks, caffeine and alcohol as well. Use a straw to avoid sores
What To Eat
I haven’t eaten solid food in days and I”m dropping weight faster than Rosie when she got paid to endorse weight watchers. 🙂 So, obviously, this is not the best way to go about fighting cancer. We need to keep our strength up and need to be eating healthy, right? So here are some suggestions.
Soup – I have been eating canned chicken soup with the pearl pasta. It tastes great but, I’m worried about the BPA in the cans. Check out my post “Warning to Neuroendocrine and Carcinoid Patients, BPA is an Endocrine Disruptor”. The last thing that I want to do is flood my system with BPA from a canned soup. So, if you have the time then make your own or buy home cooked soup locally.
Eggs – I’ve discovered that I can tolerate scrambled eggs if I am careful about how I eat them. Once any food scraps get down near my sores it doesn’t matter how soft they are…it HURTS.
Ice Cream – This is the perfect way to soothe your mouth. It’s cold and numbs the sores and reduces inflammation…and it’s tasty. 🙂 Avoid things with chunks or anything acidic like cherry.
Meal Replacement or Supplement Drinks – You can use these to increase your caloric intake, whiz ’em in a blender to add air and fill you up and add chunks of ice to sooth your mouth. You can even create a non-acidic smoothie.
Stuff That Hurt Me – Bread Hurt, Yogurt Hurt, protein bars hurt….you just need to experiment. Remember that even if it’s soft that an acidic food like yogurt or chocolate will hurt too. Just try to eat as healthy as you can.
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