Still fighting mouthsores: After one year on... - CLL Support

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Still fighting mouthsores

Survivor1951 profile image
12 Replies

After one year on Imbruvica, I’m still battling mouthsores. I take Selunium and Folic Acid (both dr recommend), use a salt water rinse, have tried a couple strong antibiotics including Diflucan. Have also tried oil of oregano without success and this week was prescribed Gelclair. No relief. They last for about 3 weeks. Still amazes me that we have a cure for cancer, but not for mouthsores!

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Survivor1951 profile image
Survivor1951
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12 Replies
Cllcanada profile image
CllcanadaTop Poster CURE Hero

Any further tests to find out what they are?

Herpes reactivations and fungal infections are not uncommon...

Diflucan may aid if its Candida fungus, but it takes time... next try acyclovir.. antiviral...

Gelclair is like a bandaid it helps cover the mucosal sores and allows them to heal better...

~chris 🇨🇦

onu1tadi2 profile image
onu1tadi2

I think the cancer treatment weakens immune system and does wreck some havoc with the body. i guess after treatment we have to be very careful and aware of everything we do and eat and avoid stress. Not easy to do.

Porter01 profile image
Porter01

Mouth sores seem to take to some of us on Ibrutinib. They are miserable. Just when you feel a bit of relief they start again. I am on 1 gram of antiviral daily but they still don’t stay away. I’m looking forward to celebrating their departure... they are ignoring the eviction notice. I may be off Ibrutinib soon cardiologist confirmed afib today. My Dr is contemplating Acalabritinib or Venetoclax. Don’t know anything about them....yet

kensim9 profile image
kensim9

Try a preventive (steroid) asthma puffer to coat ulcers - tip from oral surgeon years ago - no data, but was his last option with mouth ulcerd and appeared to work!

winterwild profile image
winterwild

Try good quality strong manuka honey. Read up about it on google.

cll2013 profile image
cll2013

A rinse made from an everyday spoonful of baking soda mixed in a glass of water worked for me. I used it every day. The soda bicarbonate neutralized the acid. Give it a chance.

Hope it clears up for you soon.

vog292 profile image
vog292

Might help: A swish of water with baking soda plus a springle of salt AFTER EVERY INGESTION. You could experimentally ingest some imported aged cheese from Europe and do not rinse mouth (Camenbert, Brie, Cheddar). The bacteria in aged cheese is considered beneficial for digestion. The bacteria of Camenbert is now investigated for use in the treatment of Parkinson. Dentists see cheese as favorable for teeth. But should be cheese imported from Europe because nobody in the U.S. seems to produce first class cheese.

W00dfin profile image
W00dfin

My mouth sores heal quickly with “magic mouthwash” prescribed by my oncologist. The pharmacy label says it is High Tech Mouthwash.

MSUdawgMom profile image
MSUdawgMom

Been on IMBRUVICA for almost 5 years. Make sure your toothpaste does NOT contain - sodium laurel sulfate (advice from my dentist). Still get them occasionally, but this helped me a great deal.

Cllsller profile image
Cllsller

Ask your doctor for acyclovir. I use it all the time and it is very helpful.

Good luck

Dorothy cll/all for 13 years

barihite profile image
barihite

I had bad mouth sores on Imbruvica and my dentist fitted me for a mouth tray that went up the gums. And then a perio gel to put in the tray. I think I did that about 3-4 times a day. First few days were painful, until the swelling and sores went down. But a great solution for me at least!

papatom profile image
papatom

I know you probably aren't going to believe this, but you still might want to give it a try. I was having a hard time with mouth sores for months. They hurt like a son of a gun. They would go away then come back. I tried everything. Well i got a bout while i was getting over a cold and still had a cough. I started taking Ricola throat drops for the cough. The lemon mint flavor ones. I started to get almost immediate relieve from the sores. Just sucking on them. I think there is something in them that coat the sores and gives relief. Two every 4 hours. So a month later got them again and sure enough they really helped and seemed to go a way a lot faster. I'm thinking there is some kind of oil in them that coats the sores or numbs them. Can't hurt to try them. I keep a supply on hand.

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