I am having wicked mouth sores from IBrance. I take 125mg and it started in the 3rd week of my 2nd round (month).
I asked my onc if they could lower the IBrance dosage and she said they have not lowered the dosage on any IBrance patients in over 2 years.
Do you experience the same symptoms? If so, what do you do to remedy them?
Hi, I am on Ibrance 100.
I started out rinsing and gargling with warm salt water every morning and evening.(30 sec rinse followed by 30 sec. of gargling.)I had no trouble,to speak of. If I stop for a day or 2, I might get a few very small sores.The salt water seems to clear them ,often over night.
Thank you!
found this old post as I'm dealing with this right now - did you do the risnsing with salt water daily as a preventative? wondering if i should add this
Yes
I use warm water with half teaspoon of baking soda and swish throughout day. If worse I add half teaspoon salt to it. Hope it helps. The 75mg has same efficacy as higher doses.
♥️♥️
That is what I’m seeing on these posts so I asked my Oncologist to consider a lower dose. I presume they want to see the results of my first scan next month to see how the radiation (SBRT) and IBrance
/Faslodex/Xgeva after 3 months.
Are there any studies showing the efficacy at lower doses Thai I can share with them?
Thank you!
I am not sure where they are posted. Perhaps you can google it? I could not tolerate 125-my dr switched it so I would continue.
I was feeling horrible with 125 mg and my count was very low. The onc dr stop ibrance for a month. I am back to normal 3.4 count and she wanted to give me 100mg and I said no since I show no progression right now. I have small child and I cant feel like zombie! So I told her I want 75 mg. She was not happy about it but she ended give me 75mg!
Good for you! Thank you!
Odd. I know many women whose Ibrance dose was lowered. I was on 125 mgs. for three cycles (I hate it) but I never did get mouth sores as some of the women did. But many of the women were prescribed (I don't remember the exact name) but a sort of mouthwash which helped them.
"BREAST CANCER NEWSAUGUST 7, 2017
BY: Erin Rowley, Writer and Content Coordinator
REVIEWED BY: Evelyn Robles-Rodriguez, DPN, APN, AOCN
In the SWISH trial, women diagnosed with hormone receptor-positive breast cancer and treated with exemestane (Aromasin) and
Everolimus
Patients had fewer and less serious mouth sores when they used a prescription steroid mouthwash during treatment. The results of the study were so impressive that they may lead to this mouthwash becoming a standard part of treatment.
Thank you!
My Oncologist prescribed Miracle Mouthwash yesterday. It seems to numb everything temporarily.
Hello..sorry to hear that you are experiencing those sores. Rinse your mouth with warm water with a tablespoon spoon of baking soda (arm and hammer). 8oz of water.
Hi there
I only had 1 month-on 125 mg Ibrance due to low white cells but I remember having some mouth sores
Once I started on the 100 mg dose they didn’t return
My oncologist told me that she only has one patient who is on 125 mg Ibrance...so it appears that she’s happy giving her patience a lower dose
There are few ladies on here taking the high dose...I would question this as your quality of life is not good if you can’t eat for mouth ulcers...if your oncologist is determined to keep you on this dose then get a second opinion
Your body might adjust to the drug and you’ll be ok but none of us should have to tolerate bad side effects
Barb xx
Thank you Barb! Agreed!
Hi 💕 i used BIOTENE DRY MOUTH This working perfect for mi. I am on Ibrance 125 mg + Letrozole+ Xgeva + Falsodex 🤔👍.
Thank you Maludagui
I use that too . It is soothing but I am also now using a tip soaked in Tea tree oil to rub on sores. It seems to help a lot . But, mix the tea tree oil with a little bit of liquid coconut oil as I am not sure if it is ok to apply straight on sores.
Thank you! I found the following over the counter options to work best: Colgate Peroxyl & Closys.
Hi I am on Ibrance 125mg. I have experienced the mouth sores. I use Biotene Oral Rinse. It works for me. I wanted to change the doseage as well but per my onc. Doc he likes the results I am getting so he doesn't want to. I agreed.
Kelly
Thank you Kelly!
I’m being put on lower dose next week. My onc said it will work just as well. And I’m hoping the mouth sores and a few other side effects will abate then. My neutrophils are very low at present.
Good luck.
Thank you Timtam56 !
Hi,
I'm on Ibrance 125 and I got mouth ulcers during my first cycle. My Onc precribed Difflam mouth wash for when it's sore and I also kept a cup of salt water made up ready and kept periodically rinsing throughout the day to help with healing. I've started using Corsodyl Daily (but make sure it's the daily version as there are others for temporary use) or Colgate mouthwash twice a day, recommended by my dentist. I've just completed my second round of 125 Ibrance with no further mouth issues. Hope that helps.
Thank you Mindysooty
mouth wash called Peroxyl has saved me many times. it's over-the-counter too.
Thank you!
I had them the second month..I now use a kid tooth brush..and listerine total momcare..it helped me a lots no more mouth problems. My oncologist told me use abbreva..but because of my allergies I didn't..hope this is a help to You..
Thank you!
First of all, there is evidence that lowering Ibrance dosage is not dangerous. Basically, if it works for you, it works regardless of dosage. I've read on this and other support sites of women who have been on 75mg for years and are doing just fine.
Second, this is your life and your treatment; if you want a lower dose, you have that right. I don't think your onc. should refuse your suggestion. If nothing else, try 75mg for 3-4 months and see how you do. You can always go higher.
By the way, I started on 125, went to 100 and have been on 75 for 4 months. My scans are just fine.
Thank you!
Sloan Kettering put me on a supplement called Coriolus Mushrooms or Turkey Tail. Besides being a terrific natural cancer fighter, it also helps with herpes and cold sores. I buy only organically grown and take 500 mg twice a day. Sloane has done the research on this supplement and I’m having very few herpes outbreaks since I started it 10months ago.i take 125mgof Ibrance and 2.5 oh Letrazole. I’m in my13th cycle and my liver tumors just keep on shrinking!! I also take a good probiotic daily- again organically created, and really clean.
Hope this helps! Amazon has the Coriolis on their website.
Thank you so much!
I would get horrible sores my onc lowered my Ibrance to 100 and prescribed dexamethasone which is a mouth rinse and it works wonders for me.
Thank you Wildcat1
I have been on Ibrance 125 mg for over a year, and also had a problem with mouth sores. However, I started rinsing twice a day with warm salt water and baking soda, and that has really helped.
I use manukah honey - factor 16 - and most of the pain disappears with first application(give it a few hours) though i usually use it a few times a day for two days. It just needs to sit on the sore for a minute because obviously your saliva wipes the honey away.
Ps. Oh..... and the mouthwash. Yes yes yes.
Thank you! I am going to get a 2nd opinion before I go back on IBrance.
Dear hopenowandtomorrow
I think you’ll find we all here have had similar probs. And I too have been suffering and on 125mg. My onc on just lowering mine now after a year of me suffering from same and more. But she was surprised at herself for not lowering it sooner. She also said it would work just as well.
I still haven’t gone back on ibrance as my wbc are to low still. Hope by the end of the week I’ll go back on.
But maybe a second opinion for you?
I don’t know. Just a thought.
Timtam56
Hi. I started out on 125 mg in Oct 16 and had it lowered to 100 mb in April 2018. I also went on a 2 week break from the one week break due to neutrophils being low. I am still stable. I wish you the best in battling your mouth sores. I will rinse my mouth with hydrogene peroxide when they bother me. Be sure to not swallow.
Thank you @Winlynn!
There is a GREAT Chinese Medicine formula oral rinse that really helps.
Yin Care Supreme Oral Care , Herbal Mouth Wash. It is expensive and worth every penny, available on-line . Check with your practitioners and if okay then use a stronger dilution when sores are really bad and hold it in your mouth for as long as you can bathing the area that hurts, several times per day till better.
I used this during Chemo (the drip kind) years ago when the usual remedies offered were not working. Also used it for mouth sores when I first started Ibrance.
I had some mouth sores on Ibrance (now more on Afinitor). My doc prescribed dexamethasone mouth rinse. I prefer a mouth rinse by a small biotech firm, Prisyna. Very effective for me. They have a spray in a small travel bottle of a formulation for dry mouth, but it helps for mouth sores. They’ll soon get FDA approval for a stronger formula for mouth sores which will be even better (I tried it).
I'm on 125mg and just started my 2nd week, actually I'm 2 doses in to my 2nd week. Anyway, I work today with a weird sore in my mouth, doesn't hurt too bad yet, just felt this weird thing in my life cheek, close to the gums, and within about 20 minutes or so I noticed these bumps on it, I think it was like blisters cuz they popped and now it's starting to hurt a little. Do u think this is from the ibrance? I'm not familiar with it so I'm unsure if this is the start of mouth sores.Also, what other side effects have you experienced? I've felt super tired, no energy and nauseous. I'm also losing hair.
Hi Kathysuej: For me, It takes a few months for my body to adjust Ibrance. I would recommend rinsing your mouth with Peroxyl from the drug store multiple times per day as soon as you have any sense of a mouth sore. I also avoid acid foods/drinks like tomato sauce & red wine. Fatigue is normal the last 2 weeks of your cycle. Drink lots of water with your pills. I’ve heard Claritin (no-drowsy) with 10mg of loratadine helps with nausea and other side effects.
All the best to you!
🙏❤️🙏
Mouth Sores
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