Ibrance and the tongue

[HbbM]

Do others have issues with sores n the the tongue while on Ibrance? I just started 2 weeks ago and doing the 5/2 schedule. Noticed a spot on my tongue yesterday that wasn’t there before. It’s not sore yet but looks suspicious.

[HbbM]

I should have done a search first. 🙄 It’s getting late and I’m sleepy. I found what I needed. Really love this group!

[Gigigoodies in reply to HbbM]

I've been on IBrance for 22 months, sores on my tongue appeared 8 weeks ago, my GP Dr. prescribed a mouth rinse, didn’t work. ENT Doctor next prescribed a different mouth rinse, no change. What next? Oncologist said see your GP. No one knows what it is.

[HbbM in reply to Gigigoodies]

have you searched this group? There have been some good suggestions.

[Silver126]

I suggest to rinse your mouth with water and bicarbonate after lunch and dinner. It’s not expensive at all and it works. My onc said it’s an old remedy that gives the best results.

[HbbM in reply to Silver126]

thank you!

[bracelets1]

I am on IBrance and with each cycle, in the week 3, I have noticed a pattern of developing either tongue sore or mouth sore. Milk of Magnesia works wonders for me. I dab it on with a Qtip before bed. Hope you find something that helps!

[Tantalon7211 in reply to bracelets1]

thanks for the tip- Been on Ibrance for 3 cycles and towards end of cycle , get mouth sore and this time a cold sore, will try milk of magnesia as you suggested- always feel unwell at end of Ibrance cycle -

Thanks again

[HbbM in reply to Tantalon7211]

have you tried the 5/2 cycle? Seems to work better for some.

[Tantalon7211 in reply to HbbM]

thanks for reply- i mentioned it and it’s not common here I guess - they said sometimes 3 weeks on and two weeks off- so maybe that’s worth a try- I am on low dose of .75 too- hope it will work for me as it has for you

[HbbM in reply to bracelets1]

thank you!

[Hidden]

Yes, sadly mouth sores are a common side effect. I’ve had them pretty bad at times. They don’t happen all the time so I’m not sure what the trigger is.

Your Onc can prescribe a special medicated mouthwash that helps with the discomfort. I use a mechanical toothbrush mostly now as it hurts less to brush.

You get used to it after a while and can mange the symptoms better as you go. It’s been 5 years for me. Good luck friend.

[Hidden in reply to Hidden]

Oh, added note to my reply. I never used the mouthwash. I just rinsed with baking soda water and just kept my usual mouth hygiene as best I could. Also ate softer foods for a couple of days. I hope you find a solution that helps you

[Tantalon7211 in reply to Hidden]

thanks for the tip- I got a cold sore on my lip , end of this cycle with Ibrance - only been on it 3 cycles

Very good to hear you’ve had 5 successful years on Ibrance are you on a 3 and 2- and .75 mg

[HbbM in reply to Hidden]

thank you

[Red1246]

Yes, I had them in the beginning and they were annoying and then a bit sore. I think either my oncologist or primary care physician gave me an Rx for, as I recall, a spray that helped. It was more than two years ago so a bit foggy on details. Still on Ibrance and no issues now. Good luck. Kathleen

[HbbM in reply to Red1246]

thank you

[TeddyChowChow]

Hi HbbM, Yep. I get sores on the tongue. Not every month. It seems to fluctuation. I have a mouthwash from the doctor and sometimes find that it is helpful to avoid particularly sweet or particularly sour things when the sours start. I think paracetamol helps if the spots are particularly sore. Xx

[HbbM in reply to TeddyChowChow]

thank you

[Beryl71]

Yes I get them now and again but use a herbal toothpaste and mouthwash. That keeps them at bay. But odd ulcers are one of the side effects. X

[HbbM in reply to Beryl71]

which one do you use?

[Beryl71 in reply to HbbM]

I use a company called beauty naturals. The product is Aloe dent. X

[8576]

I am on Verzenio, apparently, a sister drug to Ibrance 100mgs. twice a day. I have not had mouth sores but my hair is thinning and of course I have to control the loose stool but it is manageable.

Cheers, June S.

[bikebabe]

b cause I’m on denosumab as well, and I have a mouth full of metal fillings and crowns my dentist prescribed high strength fluoride toothpaste. Have had it for a year now with no only one episode of sore mouth when my script supply had run out.

[embrace28]

ive been on it for almost 3 and half years and hopefully your body will soon adjust to it and later you may not get this side effect anymore.

[HbbM in reply to embrace28]

Thank you

[Totheriver]

I have had sores in my mouth from Ibrance and I use magic mouthwash. It really helps.

[HbbM in reply to Totheriver]

seems to work for most. Thank you

[LadyC-Mtl]

Hi HbbM.I have been on IBRANCE for 20 months now and started developing mouth sores about 6-7 months ago. I found taking a complex vitamin B helped me along with using a natural mild toothpaste, as standard Colgate type toothpaste really aggravated the sores for me.

Good luck to you 🌸

[HbbM in reply to LadyC-Mtl]

thank you

[BaileyJames]

Mouth sores are a common side affect. Rinse your mouth out with warm salt water..it really does help. Good luck 😊

[HbbM in reply to BaileyJames]

thank you

[goat1941]

When I was on I range awhile ago I did get a little soreness but my once gave me a mouth rinse and it worked. In fact I only had to use it a couple of times and it never came back.

[HbbM in reply to goat1941]

good to know

[1glajon]

I noticed them as well! I make sure I rinse my mouth quickly with plain water and try not to keep biting it with my tongue....it only seems to happen near the end of my 3 week cycle!

[HbbM in reply to 1glajon]

thanks

[Granny333]

I had what looked like a bruise on tongue and dr. took me off for now because blood count lie

[Granny333 in reply to Granny333]

low

[HbbM in reply to Granny333]

some have done the 5/2 schedule with better results for the blood counts.

[CatLady2022]

I get sores in my mouth often on verzenio and letrizole. My onc told me to use a mouthwash of 1/2 tsp salt, 1/2 tsp baking soda. When I forget to rinse 4x a day and I get a sore that just won’t go away, I have to use a prescribed mouthwash but it has no name. They just sent a script in to my pharmacy but on the bottle itself it says special mix or something like that but it works great. I’ve actually had a sore so bad that I lost a tooth to the meds.

[HbbM in reply to CatLady2022]

wow. I’m sorry to hear that.

[Ingalls]

The baking soda/salt rinse and especially Bonjela really helped with the mouth sores. But once they lowered the Ibrance to 75mg, I didn't have problems with mouth sores again. I've been on 75mg for around 1.5 years and doing well, apart from low neutrophils. I've also just started trying the 5/2 schedule this cycle. Would love to hear how you're doing with this 5/2 schedule in the future. Take care.

[HbbM in reply to Ingalls]

thanks for the tips. I’ll definitely come back and let you know. Glad you’ve been able to be on it so far.

[Ingalls in reply to HbbM]

Thanks HbbM! I hope the sore on your tongue won't get worse. The mouth/tongue sores were a nightmare for me so do try the baking soda/salt rinse or whatever that works for you before they start getting sore. All the best!

[Sile0507 in reply to Ingalls]

hi is 5/2 14days on n 14days off??

[Ingalls in reply to Sile0507]

Hi Sile0507, sorry for the late reply. 5/2 schedule is 5 days on and 2 days off every week for 4 weeks (1 cycle). So essentially we're on Ibrance for a total of 20 days on/8 days off per cycle (instead of the recommended 21 days/7 days off). I first came across this 5/2 alternative dosing from a post on this site by Dragonfly2 (so thankful to her!) and have since found that a few other ladies here who struggle with low neutrophils have had much success with this schedule. Much love and blessings.....

[Sile0507]

Hi I am on Ibrance also started December 2021 on 21days on 7 off 175mg then 100mg after two months and now on 75mg 14 days on 14days off

Mouths sores would always be by sign of low immunity now my neuts blood count is low and takes two wks to be ok to start back on Ibrance to have it over 1.0

With mouth sore you can Get a mouth wash from oncology called BMX I also got steroids from my GP that I let jus melt into the sores and found they work very good I have used every remedy possible some say jus salt in Luke warm water it the best but I jus can’t do it 🤢.

Hope you find What can work for you xx sending love 💕