Ibrance and Mouth Sores

[Unicornuniverse]

I get mouth and/or tongue sores every month on Ibrance - i've tried everything - the prescription steroid, all the holistic and natural things, and it usually doesn't help at all. Some are wore than others, right now I have one so back on the back side of my tongue and I feel kind of sick all over an super tired. Not take to my bed sick but definitely not vibrant and energetic, no fever but feels like that general malaise of a fever. Just curious if anyone feels bad all over in general with a bad mouth sore?

wondering if it all has to do with a low neutraphils count, i get that bloodwork tomorrow. this is the last day of my week off of Ibrance (3 weeks on)

thanks for any insight!

[love2golfwell]

I'm so sorry you are experiencing that side effect. I have been on Ibrance for almost 3 years but have never had a mouth sore. It sounds very painful. I know others on this site have experienced that. You can search this site for related posts for mouth sores and perhaps find some helpful suggestions. I remember several people used a special mouthwash that helped them. Best wishes. Sending hugs.

[SpongebobMom]

stop any and all sugars, even fruit.

[Totheriver]

I do get sores from ibrance too. Some months are worse than others. I got prescribed magic mouthwash by my onc. And it really does help. Theresa

[Unicornuniverse in reply to Totheriver]

yes weird how some months are worse! I have magic mouthwash and it is helpful if I have to eat but it's so shortlived and also weird haha

[morty87]

I've been on Ibrance for more than 5 years with excellent results. I do, however; have occasional mouth sores. Some months are worse than others. I have found that a daily Lysine tab (OTC) has helped keep this manageable. I was susceptible with mouth sores prior to MBC. Good luck and God bless.

[Unicornuniverse in reply to morty87]

oh i forgot about Lysine! I need to get more, I also was susceptible to them, since I was a kid actually

[Kcap430 in reply to morty87]

Would you mind sharing the brand of Lysine you use? I have been taking Claritin daily for 3 weeks and have seen great improvement in my joint ache and stiffness! Thank you for sharing that bit of wisdom ❤️

[morty87 in reply to Kcap430]

Spring Valley 500 mg from Walmart. I'm so glad you have seen some improvement with the Claritin! My oncologist approves of both of these supplements. Good luck!!!

[Kcap430 in reply to morty87]

Thank you! Wishing you continued success with your treatment! In it together 💕

[AvidBooklover]

What dosage are you on? I moved from 125 to 100 and this problem abated except very occasionally at the end of a cycle.

[Unicornuniverse in reply to AvidBooklover]

125 - but i'm on a clinical trial so I'm not sure if i can lower the dose and stay on the trial so I'll need to ask about that

[AvidBooklover in reply to Unicornuniverse]

Wat is the trial and where do you live? How long have you been on it? For me just about 4.5 years.

[Unicornuniverse in reply to AvidBooklover]

I live in Austin TX - the trial is the Serena trial, so I take Ibrance and then I take 2 pills, on is either the trial drug or placebo, and the other is either anastrazole or placebo - so i get a drug I just don't know which one! - it's been 15 months

[AvidBooklover in reply to Unicornuniverse]

Would Anastrazole replace the need for Faslodex shots? As in is it a estrogen inhibitor...or whatever? I do not mind shots, but running my life around shots every 4 weeks is annoying.

[Unicornuniverse in reply to AvidBooklover]

the brand name is arimidex. Although Falsodex is also a type of hormone therapy it's not an aromatase inhibitor like anastrazole is - i don't really know the difference and why thoughtr!

[NShaft]

Swishing with Biotene often worked for me when I was on Ibrance.

[Unicornuniverse in reply to NShaft]

i have some on order from amazaon!

[Tam-56]

Mouth sores are the worst! What has always worked for me is to eat mashed avocado and also rinse with Biotene(OTC). I've been Ibrance over 5 years and just recently reduced dose to 100 MG. Hope you feel better.

[Unicornuniverse in reply to Tam-56]

thank you! i ordered some biotene from amazon, coming tomorrow! and oh my mashed avocado sounds so good!!! i can only eat this one lentil and coconut soup from a place here

[Mermaiden]

I’m so sorry you are struggling with these painful mouth sores. Mine were terrible at the end of each cycle on Ibrance 125mg. The magic mouthwash made of liquid lidocaine, an anti-fungal, and mylanta saved my life, albeit only temporary relief, but relief nonetheless. Eventually, my oncologist agreed to try 100 mg Ibrance, and that helped but I was so grateful to finally be dropped to 75 mg and now I don’t need the mouthwash anymore at all. Good luck to you! I hope you can find some relief.

[sevoia]

I take my Ibrance with yogurt. I put a little yogurt on a spoon, add the Ibrance on top, then cover the Ibrance with more yogurt and swallow the entire thing. Then chase that with more yogurt. I buy the single serve size. I rarely get mouth sores anymore.

[Unicornuniverse in reply to sevoia]

that's a clever idea! I don't eat dairy so I wonder if would cork with coconut yogurt

[sevoia in reply to Unicornuniverse]

I am sure it would be fine. The idea is to cover the Ibrance so it does not touch your mouth.

[michelangelina]

I am also on Ibrance, and also struggled with mouth sores. What made the difference for me was taking zinc on a daily basis. I take zinc picolinate, 22 mg, which I buy on Amazon. I also rinse twice a day with a salt, baking soda and water rinse. I don't get sores much any more, but when I do I have a steroid paste--triamcinolone for dental use. It really helps them heal much faster.

[Unicornuniverse in reply to michelangelina]

thank you! do you rinse twice a day regardless if there's a sore or not as a preventative?

[michelangelina in reply to Unicornuniverse]

Yes, I do it every day as a preventative

[Trissh]

This has happened several times during my two years on Ibrance and Letrozole. As soon as I feel a tiny sore I start salt water rinses a few times a day and they have resolved quickly. --Trish

[Unicornuniverse in reply to Trissh]

ok i will try and be more diligent with salt water rinses, like a teaspoon to 8 oz? do you keep the cup around and use the same batch or make it up several times a day? thanks!

[Trissh in reply to Unicornuniverse]

I just keep some salt in the bathroom and Dixie cups... using very hot water and maybe 1/3 teaspoon salt.