Ibrance & fulventral injections. - SHARE Metastatic ...

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Ibrance & fulventral injections.

marianne88 profile image
14 Replies

Hi ladies. Just wondering how long the above meds have worked for you for MBC? I have been on them for 4 years and I am starting to get anxiety that they won’t work much longer. Thoughts? Thanks. Marian e

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marianne88 profile image
marianne88
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14 Replies
Mimiholl profile image
Mimiholl

I have been on Ibrance 125 and letrozole for almost 5 years and I have the same fears, that suddenly the meds will stop working. I’m always looking to see if there’s others out there who have been on them for more years than me. I know everyone is different but I’m hoping to have a really long run. If you look back on my earlier posts you can read about my “detour” .Stay healthy,

Mimi( Marianne)

NPmary profile image
NPmary in reply toMimiholl

I have been thinking a king ibrance and lettrozole for 4 years as nd 3 months and have the same hope. Wi as h you the best.

Mimiholl profile image
Mimiholl in reply toNPmary

That’s wonderful I’m glad there are more of us in this longevity clubMimi

DorisGarrett profile image
DorisGarrett in reply toMimiholl

I’ve been on Ibrance and Letrozole for 6 and 1/2 years. Also Xgeva too. But as of this week had to stop due to a femur fracture caused by the prolonged use of Xgeva.

Flag1947 profile image
Flag1947 in reply toDorisGarrett

They put me on a blood thinner when I was hospitalized for blood clots in both lungs (same time they upgraded to stage 4 MBC. Told me I would probably be on them for life. ) I took them for 6 months and then took myself off of them. That was a year and a half ago with no significant affects. You have to be your own advocate with all these new medicines and their "side effects" when mixing others into your current regimen.

Klamato profile image
Klamato in reply toDorisGarrett

Doris, I have been on Xgeva for more than 3 years and in the past 18 months, have broken TWO femur bones! My doc NEVER mentioned that the first break was caused by Xgeva and continued to give these injections to me and thus 18 months later another femur break!! This is terrible! What I was told that Xgeva is suppose to protect my bones and instead I had to endure two major surgeries and months of pain and recovery with months of therapy! It’s important to be your own advocate!!! Kathy

bubblystream profile image
bubblystream in reply toMimiholl

That combination worked for me for 4.5 years. I was on it 6 more months until scans showed progression into my liver from my bones. Really almost 5 years. But my tumor markers started to go up steadily after the 4.5 years point. My dr always waits till scans show progression. If your tumor markers are steady then don't worry about it. There is other stuff to put you on that works. I am on Piqray now. It is working. I am stable again. :-)

TE53_67 profile image
TE53_67

I have been on 3 weeks on and 2 weeks off 75mg Ibrance since August 2018 :) with zoladex injections and letrozole :) x

Gingerann1 profile image
Gingerann1

Hi Marianne! I have been on this combo for a year now with no progression but personally know someone who was on for 6 yrs before having to add another drug due to bone mets. My oncologist said he has had several patients on for 8 years before having to make a change when I asked that question. Hope this is helpful. Stay strong! Lin

marianne88 profile image
marianne88 in reply toGingerann1

Thank you so much. Makes me feel so much better 💕

Mimiholl profile image
Mimiholl in reply tomarianne88

I second that thanks so much for all replies. I’ve recently had my dose lowered to 100 in hopes this will help my blood issues. I’ve been on xegeva monthly shots for almost 5 years too. I do have full body bone scans and full ct scans every 6 months. Happy healthy New Year

Mimi(Marianne)

marianne88 profile image
marianne88 in reply toMimiholl

💕

mariootsi profile image
mariootsi

I have been on them for 3 years. I'm praying for more time just like you! Have my scan in January. I think everyone is different, so, hard to say how long it will last. I feel the same anxiety with every scan! Crazy!

Epinto profile image
Epinto

Hi there. I have been on ibrance 125 and faslidex coming up to six years this may. I also always wonder how long my luck will run out!

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