Mouth sores

[CLLmoxie]

I am on 4th cycle of Obinituzimab and Ibrutinib and now have 3 large sores on sides of mouth. Oral hygiene good. Have products for chemo patients. Neutrophils normal. I just tried baking soda on them. Had appt yesterday and they said to watch and call if they get worse given whole picture. Any suggestions?

[Newdawn Administrator]

I’m using Corsodyl spray and mouthwash on mine but someone suggested Difflam. The roof and sides of my mouth have become sore with a minor ulcer on inside of my lip. I’m on I&V.

This has only started for me since my neutrophils dropped under 2. I’ll mention it to the haematologist next visit.

Good luck sorting it moxie. Let us know if anything works well.

Newdawn

[CLLMoxie2 in reply to Newdawn]

A nurse told me that many patients report applying baking soda directly to lesions and letting it sit then rinsing well works well ... I will report back.

[Newdawn Administrator in reply to CLLMoxie2]

Thanks Moxie2

That threw me when I saw a different avatar photo and then realised there’s 2 CLLMoxies! 😊

Newdawn

[CLLmoxie in reply to Newdawn]

I did not realize that - but I have the most moxie lol

[cajunjeff]

I had a few mouth sores with ibrutinib, they were not large like you describe and very transient.

I use alcohol free biotene mouthwash and biotene toothpaste. I felt like it helped me some with my sores, I cant be sure.

I hope your sores improve. I have some blisters that come and go and have not been too bad for me.

If they persist, maybe talk to your doc about taking a few days off ibrutinib and then restarting. I did that with another ibrutinib side effect and it helped .

[CLLmoxie in reply to cajunjeff]

Thank you

[Toothdoctor in reply to CLLmoxie]

You might want to Try Kenalog orobase it is a prescription. That being said do check with you doctor first.

Good luck!

DLC DDS

[JigFettler Volunteer]

Hiya!

Great replies above - I have no personal experience of mouth sores.

However in addition - I would urge that mouth sores need a diagnosis, always. That you have 3 makes me slightly more comfortable.

If I was in your place I would see my dentist - I have an excellent dentist, or my GP soon.

If you know them to be related to your treatment - fair enough. If they are new - suggest getting them checked.

Hope it goes well!

Jig

[CLLmoxie in reply to JigFettler]

Thank you - they come and go and are a common side effect of treatment. Baking soda and Prevention Oncology mouthwash clears them in 1-2 days. If one were chronic, I certainly would have a biopsy.

[annmcgowan]

Hi I use gengigel mouth wash to prevent mouth ulcers and Difflam products when I have them. Difflam comes as a mouth wash, gel and sweets. The sweets are very good for when you are out and about.

Ann

[CLLmoxie in reply to annmcgowan]

Thank you

[CLLmoxie in reply to annmcgowan]

Thank you

[Mystic75]

My husband had issues with mouth sores when he was being treated with ibrutinib/venetoclax and the doctor prescribed him acyclovir.

[country76]

They might be mouth sores. I eat 2 Brazil nuts a day, that does it for me. Very seldom do I get a mouth sore now.

There's mouth wash your doctor can prescribe, also sugar-free lemon-mint Ricola cough drops.

[curlscurls]

I can't answer from how to heal them or what needs to be done now, nor any CLL suggestions. So with all those disclaimers, when I got CFS (chronic fatigue syndrome) years ago, it effects your immune system. I got mouth sores a lot. Not huge but canker sores, 2-3 at a time all the time. I switched to Tom's of Maine toothpaste, and they stopped. I still use that brand.

[Mrsminton]

Ask your doctor for this prescription mouthwash: Peridex is the brand name, generic is: chlorhexidine gluconate- 0.12% Oral Rinse. I have used this for mouth sores of unknown origin.

[BeckyLUSA]

I had the typical mouth sores associated with Ibrutinib a couple of times, used “magic” mouthwash (a compounded liquid that is a prescription) and they went away quickly. Now I have tiny cracks in the corners of my mouth. They are worse in the mornings when I first wake up. My dentist told me to use a “yeast” cream like you use for athlete’s foot, but when I looked at them at the pharmacy, they all said to keep away from eyes and mouth. What to do?

BeckyL

[Big_Dee]

Hello CLLmoxie

I was told to gargle in morning and before bed with cup of warm water. Mix one teaspoon of 1 part salt to two parts baking soda into water before gargling. Has worked very well for me. Blessings.

[jdolinger]

Good Morning CLLmoxie

I too have had occasional mouth sores, but many times due to simply biting down on the inside of my mouth while eating. Since being on ibrutinib however the mouth sores have been more prominent. After discussing this with my Hematologist, he prescribed what is called "MAGIC MOUTHWASH". I had to go to a small independent pharmacy here in South Carolina that mixes up such compounds. After insurance the cost was only $4. The dosage instruction are ....."take 2 teaspoonful 3 times a day before meals." It is very effective. Here is a link to one article on it. 1mpages.com/magicmouthwash Good luck.

Jack O.

[CLLmoxie in reply to jdolinger]

Thank you - they offered that too but I said I would wait - now I need it lol

[michaeledward]

When I first began taken Ibrutinib 5 years ago, I developed horrible mouth sores. My hematologist took me off Ibrutinb for several weeks until the sores cleared up and prescribed acyclovir. I've been taking acyclovir daily.

[Hoffy]

Oregano oil worked best for me. 1 drop of toothpaste. Worked in about 1 week.

Be well,

Goff’s

[bigunwill2]

They gave me a prescription for a swish for mouth this week at UTSW. I’ve tried it once since I had a minor sore.

I had hard time swishing it. After your through, your mouth feels like what a dentist puts on your gums to give deading shot. I stays like that for 20 minutes or so. I hate the taste, and gag on it, but it works. They suggested put in refrigerator, so I’ll try it that way next time. Right now I’m using the soda solution they made for me 4 times a day, especially after meals.

[Catnap7]

Just read your post

Hi I am a MOUTH SORE QUEEN

I tried everything suggested to you from all these wonderful CLLers and many more

Nothing worked !!!!! For four months

I lived with dry mouth and 10 or more big mouth sores almost every day. One time my GP told me it was a bacterial infection that went transient and spread to my jaws and salivary glands The only way I could eat without pain during these four months was to use

Magic mouthwash which I mixed myself every day. Finally my oncologist told me to see a specialist ... oral surgeon

I actually saw two. They both said the same thing ... I had oral yeast infection oral bacterial and oral herpes virus all from

Ibruitinib and Venetoclax. They put me on an anti fungal and steroid mouthwash and lowered my dosage to 2 Ibrutrinib tablets

Well that did the trick. I am a very small woman and it is obvious I was on

TOO MUCH DRUG.

I strongly suggest you see a specialist..not just a dentist and find out exactly what is going on. so you know what products to use. Maybe your dosage is too high for you also ...

Catnap7

[Santoshax in reply to Catnap7]

I just read your post - interested that they lowered your dosage - like you I am of short and small build / my question to Dr was / does one dosage apply to all .tall big men and a small women - Yes was her reply.

I have been on Ibrutnib for just shy of 2 months - feeling a little discouraged as have Mucositis- was dehydrated and feeling very poorly / so painful- also anaemic - plan to ask my Dr about dosage next week. Thanks for your post - Helen

[CLLmoxie]

I put baking soda on them directly and then rinsed that. After that I used Prevention mouthwash 4 times/day. They are gone for the moment. I will keep your excellent suggestions in mind if/when they return. Thank you

[catnapcrew]

When you say sides of mouth do you mean outside of your lips? I’m a couple years into v&i trial and past 2 months have sores on lips and around mouth. Diet good, never had b4. Tried all these ideas even tho there’s nothing inside mouth. Never had cold sore so wondered if that but it covers my whole bottom lip and all around mouth is red and some sores. Painful. Sachin keeps it under control but it won’t go. Both lips really red and painful. Saw skin doc he said definitely not cold sore or skin cancer (I said I thought it looked like farmers lip). He also said lips mouth will heal itself. Yes he knows ongoing 2 months, cll and i&v. Does anyone have sores on lips and outside lip edge? Waiting to see trial doc soon. Should I put this on separate post?