Mouth Sores: Just wondering. I am on/in a... - CLL Support

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Mouth Sores

pwebster
pwebster

Just wondering. I am on/in a clinical trial with Ibrutinib and Venentaclax .I has exceeded my wildest dreams( i.e.when I started, my WBC was 414,000 and is now holding steady at 4,000). That being said, recently,my mouth has broken out with painful sores through out. My P.A. at MDA said this is very common with CLL.They have upped my daily dosage of Valtrex from 400 MGs to 2000. I am also swishing with Calcium Chloride( really painful!) and then something known as "Magic Mouthwash" . After three days , nothing seems to be getting better.

Bottom line, is anyone else experiencing this and if so, do you have any suggestions other than what I wrote above,

Thank you in advance.

17 Replies
oldestnewest

Hi pwebster

I have had a few mouth sores while on this trial. I use mouth wash and I wash my mouth with warm water and baking soda..it usually clears it up within a couple days.

BC

Change your toothbrush, and disinfect daily under hot water

Cllcanada
CllcanadaTop Poster CURE Hero

See your doctor... could be fungal... you need a proper diagnosis.

Candida fungus, ..aka Thrush

~chris

Try dripping a couple drops of Organic Oil of Oregano on your toothpaste when brushing your teeth. When I first started, it quickly healed the mouth sores present, and has continued to prevent new ones after 20 months.

The oil makes your tongue and mouth dance, so don't use more than a couple of drops. After brushing, I swish what is left in my mouth around like a mouthwash, and do not use a mouthwash after that so the anti-microbial oregano can do its thing.

Hope this works for you.

kathymac52
kathymac52 in reply to starsafta

Make sure you use a good essential oil like Young Living....not all oils are created equal...(do your research on oils...)

starsafta
starsafta in reply to kathymac52

You are right. I use Natural Factors Certified Organic Oil of Oregano. It is just oregano oil in an olive oil immersion.

This oil, dropped on my toenails every morning, is also clearing up fungus. Good stuff!

Hoffy
Hoffy in reply to starsafta

I do the same. Works great. I wash off my tooth brush after putting it on since it is really strong.

I had sores but after the oregano oil they all went away.

Hoffy

I was getting quite a few sores about a year ago, I've taken some supplements but as we're finding out, apparently they're good for nothing, so maybe as somebody mentioned above; perhaps the trick is switching your toothbrush... not just getting new ones but alternating between two and placing the one you're not using under sun light and letting it dry that way. Hope it doesn't sound too weird....lol!

I would try swishing my mouth with aloe Vera juice from health food store. Use cold processed with no skin in the mix. The skin has laxative effect. The pulp is know for healing open sores.

Farrpottery

Hi pwebster

I was recommended using bicarbonate of soda and salt as a mouthwash. Unfortunately once I was using it quite regularly I found it made me feel quite sick. I asked my pharmacy what’s good for mouth sores whilst I’m on chemo and he suggested CEPACOL mouthwash (I hope it’s available for you as this is the brand name in Australia). I’ve never looked back since. Thank goodness no more mouth sores.

Lots of good health for all of us. Much love joinf 😊

edhooks50
edhooks50 in reply to joinf

Using a mixture of salt and apple cider vinegar has helped me.

Thank you> I'll look to see if that is in the States.

Thanks to all for your responses/ suggestions.

I agree with CllCanada......make sure it is not fungal like thrush...my husband just does salt water mouthwash and I have changed his toothbrush. He cut back on citric items and increased his Greek yogurt, Kefir, etc....it has helped a lot...

Thanks! I have gone to the Dr and she prescribed a larger dosage of Valtrex and something called "Magic Mouthwash". She said it didn't appear to be fungal. It's still hanging around.

You didn’t say how often you are using the magic mouthwash. My mouth sores sometimes heal slowly even with multiple swishes throughout the day for several days. Also helps to avoid drinking anything for a half hour or so.

pwebster
pwebster in reply to W00dfin

About 4-5 times per day. Things seem to be getting a bit better but it's been a week now.

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