Mucousitis or Chemo Mouth! Ugh!

[Hotlantaphatz]

Yep, got it! Sorry but I feel like 💩! Started Affinitor a little over a week ago along with Faslodex and woke up two days ago with the worst tongue and cheek (haha) pain ever. Swelling. A lesion! I feel as if little knives are cutting inside my mouth. Difficult to talk or eat. As anxious as I get I immediately called my oncologist. Prescribed Magic Mouthwash and Tylenol. Soft food diet. Unsure of when it will heal or get better 😟 since I am new to this chemo treatment. MBC Chics! Help! Any advice?

[USIrishcolleen]

Hotlantaphatz,

Sorry that I have not experienced anything like this, but am also not on the same treatment that you are on. I just wanted to let you know that some your there is empathizing with you.

I hope it will reverse itself quickly.

Best,

Colleen

[8576]

That sounds to me like an adverse reaction and you should uit taking it. Maybe another combo would work for you or are you on the lowest dose? Take an antihistamine. I guess your doctor has prescribed it.

Cheers, June S.

[mbashura in reply to 8576]

Hi, I also had a bad experience on the drug it was so bad I had to go to the hospital. The good news was that my tumor markers went down 13 points in nine days! My doc decided to lower the dosage and that worked, it kept my cancer away for a year and a half before it stopped working. I wish you the same or better experience with this drug!

[Hotlantaphatz in reply to mbashura]

Appreciate your input! Since I am on 10mg I am going to consider lower dose

[Bettybuckets]

Muguard is a nanotechnology product that helps but you need a script for it.

[SoulJourney]

Good morning ! I can empathize and share a little. I am on AC and my mouth goes bananas for about a week to a week and a half.

I got a baby toothbrush, a regular one rips at my gums, switched to baking Soda no toothpaste - it sets my mouth on fire. Magic mouthwash is an excellent tool as well as Biotin products. I use Baby Orajel on the sores (Extra strength).

How is the eating? maintaining weight will be hard. And so is taste with a mouth full of sores - smoothies, Greek yogurt ( more protein), chicken broth, fruit popsicles are helpful. Watermelon if the taste doesn’t bother you - I find I can only taste sour on the worst days. Drink tea over coffee.

Watch your saliva glands don’t block… lumps in your cheeks - if that happens rinse your mouth with 1/2 tsp lemon juice - spit out whatever ends up in your mouth - wait as long as you can then rinse with water. It is really gross but it works.

And yes use pain relief, I use my perscribed pain meds and CBD if you can it is a big help in that week.

So sorry I am sharing this with you, it is a very difficult side effect and hard on the mental game too. But we are doing it together! Hope something helps in what I shared. Hugs💜Tammie

[Hotlantaphatz in reply to SoulJourney]

Tammie you are a 🛟. Your suggestions are on point. The baking soda and baby oragel works! Have appointment with oncologist to request a lower dose. We shall see

[SoulJourney]

PS. It was recommended to me to suck on ice chips during treatment like a cryotherapy. Supposed to reduce the effects in the mouth.

I am going to give it a shot next round!

[life8888]

I'm on abraxane and found that the Biotene mouthwash helps with dry mouth symptoms and lessened my mouth sores. Also, doctors/nurses suggested keeping the mouth as clean as possible, so brushing or rinsing after every meal. Tough to do, but I'm trying!

[Blakeysangel]

Hi, I started Everolimus about 5 weeks ago, started on 5mg now on 7.5, had mouth sores at the start but they have gone, kept my mouth super clean and try not to eat food that might irritate, sharp stuff like crisps( 😭 I need a bag of cheese and onion desperately) use the little interdental brushes after every meal especially when out they are easy to carry about. I also started taking L Lysine 1000mg( Onco said ok) wether this has helped I don’t know but worth a try. Good luck 😀