Ibrance and faslodex no longer working

[Shafight]

I’ve been on Ibrance and faslodex for 15 mo. Everything was going great and I had few side effects, no back pain. Then I got Covid. Back pain started creeping up on me. My last PET scan showed Mets spreading and growing larger. One in my liver. Please tell me what meds I can try next. I’m 72 and I don’t want chemo!

[stardust1965]

Sorry you have had Covid and progression. I’m currently on Capecitabine (Xeloda) which is an oral chemotherapy. It is the most effective treatment I’ve been on, with no side effects. We are all different but perhaps it would work well for you too. Changing treatments can be scary but there will be another treatment for you that will help.

[Shafight in reply to stardust1965]

Thank you so much. You give me hope. What else have you tried

[stardust1965 in reply to Shafight]

If you click on my profile it’s all there. But basically Ibrance & Letrozole for 2.5 years until July 2021 then Exemestane & Everolimus (lots of side effects) then Fulvestrant and since May I’ve been on Capecitabine. It’s working well atm. My next line will probably be IV chemotherapy.

[Hidden in reply to stardust1965]

Do you mind sharing side effects and how long you were on examestame and everolimus? My dr wants me on that next if my scans show progression. I don’t seem to hear much about that combo. Most seem to go to faslodex after first line treatment fails.

Were you on a high dose?

Thanks,

Mandy

[stardust1965 in reply to Hidden]

I don’t mind sharing 😊 I was on Exemestane and Everolimus for six months. I can’t remember the dose but it wasn’t high. Scan showed treatment wasn’t working so I switched to Fulvestrant (Faslodex). A scan four months later showed continued progression so in May I switched again to Capecitabine (Xeloda). My lifestyle dictated treatment sequence really as I wanted longer periods between hospital appointments. Everyone is different but my side effects from E&E were tummy upsets and I lost my sense of taste. All food tasted of either cardboard or metal, couldn’t even enjoy an occasional glass of wine. I felt nauseous after eating and lost weight and couldn’t enjoy food. My nails became painful and brittle. They cracked vertically from the top to halfway down my nails and caught on everything. I generally felt unwell. My nails are back to normal now and I can eat a normal diet. My sense of taste and enjoyment of food returned within a week or two of stopping the treatment!

Remember we all get different side effects so you may not get them/any. I haven’t on Capecitabine 😊

[Hidden in reply to stardust1965]

Thanks for sharing! That sounds awful. Xeloda is working well for you?

[stardust1965 in reply to Hidden]

Yes, last scan showed its working well.

[Shafight in reply to stardust1965]

Thank you. I hope your current meds keep working!

[kearnan in reply to stardust1965]

Reading your responses makes me feel a little more optimistic. I had kind of given up. I will try it and if I can't handle the side effects (I live alone and do not want an aide). I can still clean, go shopping for myself, do my own laundry, etc.

I just did not want to be on a new med that was going to make me so fatigued that I could not do anything. It made no sense. Thank you for sharing. It does make a difference!

[kearnan in reply to stardust1965]

Really. I have the breast cancer in my lungs, spine and now my liver which it seems to be spreading rapidly. The tamoxifen and afinitor that she had me on for two months did not work. The cancer continued to grow in my liver.

She told me (I did ask though) that without treatment I would have about 4-6 months left and even with this new treatment Xeloda, that if it does not work, I would then subtract the time I was on it.

I was about to stop all treatment but now that I read your message, I feel a sliver of hope. May I ask what dosage you are on, how many pills a day and if you have any weeks off?

She wants to prescribe me 8 300 mg. pills a day, to take 4 in the am and 4 in the pm and taking the pills for one week and then on week without. This gives me hope that I did not have a few minutes ago. She is calling me within 1/2 hour. I am just curious to know how you were prescribed it since you mention no side effects.

Congrats for you.

[stardust1965 in reply to kearnan]

I take five pills in the morning and five at night. I think it is based on weight. I am on a three week cycle of two weeks on then one week off. I haven’t got the tablets atm so can’t recall the dose. I just check I take three large pink tablets and two small pink tablets. Perhaps aiming off your oncologists time frame might be useful. There are “average” statistics but since when have we women on here ever been “average”?!

[8576]

I don't want IV Chemo either. I have taken oral chemo. Right now I am on my last choice of Verzenio. It works very well for me. Best wishes,

Cheers, June S.

[KMBL_]

I switched from Ibrance and Letrozole to Xeloda and Faslodex. I do have some fatigue and minor hand/foot issues, but it’s working for me. If you do go on Xeloda, please watch your folic intake. That’s what causes the hand and foot issues.

[Shafight in reply to KMBL_]

Do you mean I need folic supplements?

[KMBL_ in reply to Shafight]

Sorry, no, you’ll need to stay away from them. They cause the hand and foot syndrome. Foods like spinach and others that have folic acid will need to be limited.

[Shafight in reply to KMBL_]

Thank you so much. Please remind me and all of us. No spinach!

[stardust1965 in reply to Shafight]

Yikes just read this. I’ve been happily munching my way through a fresh delicious bag of spinach this week! Thanks for the heads up. 🙏🏻

[Pbsoup in reply to KMBL_]

Sorry to jump in but this is not the case for everyone. I eat greens galore and have only mild HFS. My two cents is folic is in so many healthy foods, and we need all the micro=nutrients we can get to keep our body fit to fight. My advice is to see how it goes, and if the HFS is unbearable, then look at cutting folate--I am not saying it isn't a "thing" for some of us...but I wouldn't jump to this without seeing how you respond first. Maybe don't take a multi vitamin with folate, but as mom said "eat your greens!"

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[KMBL_ in reply to Pbsoup]

I think you wanted to let stardust know this. She may not see this because you replied to my post. I’m so glad you’re able to eat folic, and I agree, try it and see if it creates a problem.

[U2Rocks]

Every time I express my fears of Ibrance stopping to work, my oncologist holds my hand and says, “ I have lots of drugs to try and new ones coming out all the time. “

[Fiercefighter13]

My doctor switched me from Ibrance and Letrozole to Verzenio and Fulvestrant. So far, seems to be working like a charm! Good luck and I hope you find the right medicine that gives you many years of relief!! Take care!