Susie

[Likes]

Hello,

I have stage 4 breast cancer in my right lung and pleura.

I’m new to ibrance and fasodex and I’m having many side effects such as joint pain, hot flashes and cold chills, and mouth sores.

Does anyone know if these side effects get better with time?

[Hidden]

Hi Susie,

Welcome to the group but, as we always say, sorry you need to be here!

I think you'll find this site useful and helpful...great support and information.

I'm sorry that you're experiencing those side effects. I've been on that combo for about 20 months so far and haven't had any issues, so I can't directly answer your question, but I'm sure someone with better knowledge will respond. In the meantime, you might be able to find discussions about similar issues by using the search bar in the upper right. I know folks have shared remedies for mouth sores, etc., and I do seem to recall questions about whether side-effects get better over time.

Sorry I can't be more helpful!

Be well,

Lynn

[Likes in reply to Hidden]

Hi

I’m so glad you are doing well .

[Iwasborntodothis]

I am starting my 8th round.

I have mouth sores if I do not rinse after certain foods with some sort of mouthwash.

Hot flashes - yep but not too horrible and I can predict them now - like the one at 3:30 am

My hair is thinning but Biotin seems to help

I have food aversion around day 10 as well as an annoying dry cough - more like a throat clear need sort of "ahem"

This is a great site lots of love and support.

[Barbteeth]

Hi there

If you’re on the 125 mg dose you may benefit from a dose reduction ..worth asking your oncologist

For mouth sores the best mouthwash is mucosamin...it’s brilliant

I had acupuncture for my night sweats and it stopped them straight away so there are many things to try

I’m on a different set of drugs now as Ibrance stopped working...now I have different side effects..ugh!!.. what a life

All the best

Barb xx

[Karcia80 in reply to Barbteeth]

Hi. Could you tell me what you are taking now? Ibrance stop working for me😪

[Likes in reply to Karcia80]

100 mg ibrance and faslodex

[Barbteeth in reply to Karcia80]

Hi there

I’m now taking everolimus 7.5 mg ( started on 10 mg but asked for a dose reduction) with exemastane

I took Ibrance for 18 months but I think it stopped working after a year

Do you know what your next line of treatment will be yet?

Barb xx

[Likes in reply to Barbteeth]

Hi

I don’t know since u just started current rx in feb 2020.

[Likes in reply to Barbteeth]

So helpful thanks !

[SeattleMom]

Hello, Susie!

I've been on the Letrozole/Ibrance combo since November 2017. I can tell you that I had significant joint pain the first few months. It eventually subsided and then disappeared completely. Hopefully, many of your other side effects will diminish as well. God bless you!

Linda

[Maludagui in reply to SeattleMom]

🌺😍🎀

[Likes in reply to SeattleMom]

Thank you

[AuntyJane]

Sorry you are having issues but this is fairly common. Side effects seem to vary from person to person. Since last July I’ve been on Ibrance and Faslodex -dx lung nodules. I started Ibrance at 125mg, dropped to 100 and now at 75mg. Main side effect for me has been low neutrophils. Had bad mouth sores on125mg but did not have chills, hot flash or fatigue. Hair texture changed -feels thinner and more dry. I developed an annoying rash/intense itching which I still have despite lower dose. It comes and goes on various parts of my body -not sure if it’s eczema but I didn’t have it prior to Ibrance/Faslodex. Good luck!

[Iwasborntodothis in reply to AuntyJane]

Yes! I have random itchy skin too..right now between two fingers and with all this hand washing its awful

[Gwennie123]

Mine did after the first 3 months. From horrible to mild fatigue. Hang in there.

[Likes in reply to Gwennie123]

Thanks I’ll stay positive!!!!

[Rustysrah]

I’m interested to hear that joint pain gets better too - mine didn’t appear until about 3 months in (and my bc nurse said it was the faslodex.) I’m on the 100mg dose after the first cycle, because of my bloods, which went very low after just two weeks on the tablets so they stopped them. Pain is mostly in my hands which is hard as I can’t do some things - like sewing, knitting etc. Especially at the moment when we’re stuck at home - sigh!

Hot flushes, yes but I’m used to those after 9 years of tamoxifen.

Mouth sores have got better for me, I do sometimes get them later on in the cycle but not so bad.

My hair is still as thick as ever. I used to pay my hairdresser to thin it out, I wouldn’t mind a bit less🤣🤣

We’re all different, different reactions, different efficacy. We just have to go with what we’re given, and accept that it’s the price we pay for another few years....

[SunshineBoss]

Hi. I’ve been on both for almost a year. Still have hot flashes and my joint pain in my knees unfortunately has gotten worse because I exercise a lot. I don’t have mouth sores though. It may differ with everyone. Sorry you have to go through this.

[Likes in reply to SunshineBoss]

Thanks !

[hopenowandtomorrow]

Hi CIDE: I had mouth sores & I posted what helped me in a previous post: healthunlocked.com/share-me...

I took IBrance 125 for 8 months & have moved to 100 in the past 4 months. That has helped reduce my side effects.

All the best! ❤️🙏❤️

[mariootsi]

Susie, welcome! But so sorry you are here.

I find the Faslodex gives me body aches and the Ibrance 100mg causes fatigue and low plateletes.

[Likes in reply to mariootsi]

Ok good to know this thanks

[hdhonda]

Hi Cide,

Welcome to the board. I am on Ibrance (125mg./Letrozole. My main complaint is fatigue. I will start my 38th month Monday. Mine started in left breast in 2000 and returned in a little of the skin left from mastectomy in left breast. A lymph node from left breast crossed over and went to right lung in 2017. It was such a shock. I have remained stable since then. You will find everyone so nice. Blessings Hannah

[Likes in reply to hdhonda]

Wow you are doing well.

I was just diagnosed in January 2020. I was thinking of it as a death sentence!

After reading posts from thisgroup I feel better ! Thanks for the support!

[Kiera49]

I have been on Ibrance 125 mg, for about 14 months I do get hot flushes and sometimes pain in the arms but think that's down to letrozole and bone strengthener dont think I get any problems with Ibrance. Wish you all the best. Tracey xx

[Charlie_99]

I too have been on Ibrance and Faslodex with similar symptoms. It’s the Faslodex which is causing the joint pain and hot flashes (I’ve been on it by itself). My oncologist did reduce Ibrance down to 75mg which helped with stomach issues and fatigue. And I’ve reduced my Faslodex to half dose as well. Lower doses are better. But do find exercise and taking extra supplements helps with stomach and energy.

[Charlie_99 in reply to Charlie_99]

I also have mets to both lungs.

[Likes in reply to Charlie_99]

Hi

Thanks so much I’ll mention this to my oncologist next week.

[Likes]

Hi Sandra

I had a tough time with doctors these past few months but now I have one I like.

Surgery on lung and diagnosis prolonged for 3 months to finally find out I have MBC (stage 4 which is the same thing )I’m told in lung and lung pleura in February.

I’m praying theses meds will work but I really feel awful now

Thanks for your comments and I love this support group!

Susie

[Eliactida1955]

Sorry to hear that Cide but yes it will get better it took me several months almost a year before I felt better. I still have joint pain and hot flashes not as much but there. Hang in there as this medicine works it did for me . In 4 months of use everything was stable with only a left lymph node lightening up. Now there is nothing that is lightening with bone lesions to leg gone and right tumor of breast has disappeared. My left breast had three tumors which now are scar tissue. I haven’t had any surgery radiation or chemo iv. Praise the lord!! I wish the best for you too. We will get through this❤️🌹

[Likes]

Wow so great to hear the meds work! Good luck to you!

[blms]

Take the letrozole at night before bed. It does give you hot flashes but if taken at that time it doesn't seem to be so noticeable for me. The joint pain is also from the letrozole. I have found a really good CBD with terpenes that has helped dramatically for me.

[Paradise43]

I agree. Taking at bedtime works for me too. Try it 🤩