Afinitor (everolimus) with Faslodex (fulvestrant) combo

[Jonesburger]

Hi everyone,

I will be starting the Everolimus and Faslodex combo this week after Arimidex combo with Ibrance stopped working after 20 months.

I’ve seen a lot of posts mentioning the Everolimus in combo with Exemestane but not Everolimus in combo with Faslodex. Has anyone taken this combo and if so, are you on 10mg for Fulvestrant? Can you share your side effects?

The side effects of Everolimus sound terrible. I tolerated Ibrance very well so am hoping I can tolerate Everolimus similarly.

Thanks so much for any info you can share.

[Barbteeth]

Hi there

I’m on everolimus and exemastane and like you I was dreading hideous side effects

I started on the highest dose of everolimus 10 mg but I was fatigued on that dose so requested a lower dose...now on 7.5 mg

I must say I have no mouth sores or bad skin reactions apart from slightly drier skin so have been using Elizabeth Arden 8 hr cream which is miraculous

I have worse side effects from all the pain meds I take than from the everolimus...try to keep an open mind re side effects as sometimes you can make yourself think you have them...positive thinking here!! And you hopefully will be pleasantly surprised...I find little difference between that and Ibrance...I’m anaemic but I was on Ibrance as well

Good luck and keep in touch

Barb xx

[Jonesburger in reply to Barbteeth]

Thank you, Barb. Hopefully I’ll have minimal side affects like you. I’ll let you know how it goes for me. I took the Foundation One genomic test and based on my gene’s, Everolimus was recommended for me.

[Barbteeth in reply to Jonesburger]

I’ve never had or been offered the gene test...maybe I should ask about that

I’m hoping you’re ok on everolimus...if you are started on the high dose then at least you know you can have it lowered...apparently it works just as well so I don’t understand the policy of giving higher doses if the patients quality of life is poor...same with ibrance...hardly anyone can tolerate the highest dose

Good luck

Barb xx

[Barbteeth]

Hi there

I was thinking about you the other day and wondering how you’re managing on the everolimus ...I hope your side effects are manageable...although I have a lot of pain from my bone mets ....some days I’m sure it’s less than when I was in the Ibrance letrazole combo...I know lots of ladies blame letrazole for increased pain...I’m just trying to look for the silver lining here!!

Barb xx

[Jonesburger in reply to Barbteeth]

Hi Barb, thanks for checking in. Prior to starting Everolimus, I asked my Onc if I could start at the lower dosage due to my fear of the side effects. She agreed to prescribe a lower dosage if I really wanted that, but because I fared pretty well with Ibrance (100mg) she felt that I could handle Everolimus at 10mg. So I agreed to give Everolimus 10mg a try.

I'm now on my second cycle and so far so good. I've been swishing with Dexamethiasome (5ML) twice a day since I started Everolimus so I think that's prevented me from having mouth sores. I also use Biotin toothpaste (a hold over from my chemo days) so I think the lack of alcohol in the toothpaste helps to prevent mouth sore/dryness.

The only side affect that I've noticed was the occasional small rash (pea - dime size) above my left brow which goes away after a few days of using Clindamycin Phosphate gel (1%) that my Onc prescribed for the rash. I find the rash comes up if I've been out in the sun without a hat.

I'm still able to work full time (from home), exercise, cook meals for the family, and have had no noticeable changes to my appetite (except I'm craving more desserts but it could be due to being bored at home).

My treatment is Everoliums 10mg + Faslodex and Xgeva every 4 weeks. I'm also taking Calcium and vitamin D supplements. I have scans in June to see if this treatment is working for me. Hopefully my mets will still be in the bones with no progression.

[Barbteeth in reply to Jonesburger]

Hi

So pleased you’re getting on well with your everolimus...I’ve just recovered from horrible cold sores but I did stake myself out in the sun when we had lovely weather so I’m blaming that...it’s very easy to assume it’s the drug whenever something flares up when often it’s coincidence

I’m impressed with you taking the 10 mg dose as not many ladies tolerate that...and working as well!!!

I’m having a scan Monday and see my oncologist on Wednesday next week so I’m building up to the usual panic as I really want this treatment to work for a while longer

What a life

Barb xx

[Barbteeth]

Thanks Sandra

I’m just so tired of it all...the last six months have been so uncertain...the change in meds the gall bladder op and the big rise in markers last month...I sort of feel like I’m on a downward spiral.....

Sorry for moaning...I do hope your scan is a good one ...they certainly are worrying times and we just have to live with them

Barb xx

[Mustangs2022]

Good morning. I am currently on Afinitor and Faslodex. I was on Ibrance and Faslodex for about a year for metastasized breast cancer to the bone. My scan showed it wasn't working as well as Doctor wanted so he switched me to the Afinitor. I have been on the 10mg for about 6 weeks. I am using the dexamethasone mouthwash, but I still get a few mouth sores. Food doesn't taste good - mostly a metallic taste. I'm also get leg cramps and muscle spasms, but not sure if that's from the Afinitor. I see the doctor next week, and I'm going to ask him to lower the strength. I'm supposed to have a scan in December to see if this combo is working. Best wishes on your treatment.