Adding Ibrance to Letrozol after it s... - SHARE Metastatic ...

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Adding Ibrance to Letrozol after it stops working on its own..

TwithBC profile image
27 Replies

Hi! I have been on Letrozole only for 6 years and was NED for past 5 years. I’m getting a scan soon and was told that if there is progression one option is to add Ibrance — has anyone out here experienced this situation— that is, adding Ibrance to Letrozole after a long time on it alone…after progression on it? Interesting. Thank you for any sharing on this…

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TwithBC profile image
TwithBC
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27 Replies
Claireperth profile image
Claireperth

after Letrozole stopped working I took Ibranc for 9 months. It was great until it stopped working. After 4 months on a drug trial I am a lot worse. Waiting to see oncologist next week. I am not in a good place atm. Best of luck to you 🌸

TwithBC profile image
TwithBC in reply toClaireperth

dear woman, I am so so sorry. May the God of hope fill you with strength behind your own ability — and for all of us. My heart is with you today.

13plus profile image
13plus in reply toClaireperth

Sorry to hear that you’re not doing well Claire. It looks like my trial is not working for me either (they’re ordering new scans early) and I’ll have to switch drugs again

I’ll probably post about it soon

Claireperth profile image
Claireperth in reply to13plus

If you’ve read oncologist Dr David Chan’s very good advice/opinions you might have read his views on drug trials. There’s a 2% chance they might work! He was right about me!

Split profile image
Split in reply toClaireperth

I am reading this at the end of Septand can see that the trial you mentioned was not effective and after all not a good idea. So sorry about that Claire.

AvidBooklover profile image
AvidBooklover

When Letrozole stopped working for me, after 7 years after BC when MBC was found in my hip, I was put on Ibrance and Faslodex shots. The latter is because it was shown that the letrozole was not working any more. My BC and MBC is estrogen positive. I have been on this for more than 4 years now.

TwithBC profile image
TwithBC in reply toAvidBooklover

awesome! Thanks for sharing … I think this will be my next “go to”; thanks for sharing. (Love this group—I read a lot and learn, hardly ever post!)

Garden-Lady profile image
Garden-Lady

Yes, and it made the cancer regress again. There are different strengths and regimes, you may need to experiment a bit.

TwithBC profile image
TwithBC in reply toGarden-Lady

wow. That’s so great—I don’t fully understand Ibrance — it’s like it’s boosts the drug it’s paired with, I guess.. since I have been on Letrozole alone ans have gotten a response like those who have the combo—comfusing.

LDR1 profile image
LDR1 in reply toTwithBC

Hi TwithBC , Ibrance is a new kind of targeted drug (called a CDK4-6 Inhibitor) which helps destroy the cancer cells. It’s usually paired with an anti-hormonal drug (like Faslodex or Anastrozole) which lowers the amount of estrogen in your body - this helps because estrogen acts like a fuel to make cancer cells grow. So with this combination of drugs, you can think of one drug killing the cancer cells and the other starving them so they don’t grow back. Hope that helps 😊

TwithBC profile image
TwithBC in reply toLDR1

So with this combination of drugs, you can think of one drug killing the cancer cells and the other starving them so they don’t grow back. Hope that helps 😊. Totally helpful—thanks!

Mermaiden profile image
Mermaiden

I’m very glad that letrozole alone has worked so well for you for so long. When I’m going in for a routine scan, of course I try to prepare for what might occur, but I also try to project only the positive. My single metastasis to my sternum was discovered 5 years ago. I’ve been on Letrozole and Ibrance successfully for that length of time and hopefully for a long time to come! I hope your scan reveals no further progression! 🙏🏻

TwithBC profile image
TwithBC in reply toMermaiden

… you “caught me”; I’m a glass is half-empty kinda gal hahahaha…which hasn’t always benefitted me. Thank you and may your 5 years multiply with ease!

love2golfwell profile image
love2golfwell

That is great that you were able to remain NEAD for 5 years on Letrozole only. I started on Ibrance and Letrozole right after being diagnosed 2 1/2 years ago and have been NEAD on my last few scans. Is there is reason they think there might be progression? If you need to go on Ibrance, I have not had a lot of issues with it, and I have been on the maximum dose of 125 mg the entire time. The main one has been hair thinning, have lost some of the volume I used to have, but I still have hair. I just keep it cut short. Otherwise, I feel well and am very active. Try not to worry for now. Hoping your scan does not show any progression so you can continue on your current protocol. Sending you hugs and prayers.

Godbeforme profile image
Godbeforme

have there been any more studies done on letrozole cessation for 42 days and then it starts working again? I read a study about that before and it sounded promising ... haven't heard anymore about it lately, anyone? God bless you and heal us all in Jesus name, amen!

TwithBC profile image
TwithBC in reply toGodbeforme

I read that study, also!!! I sent to my oncologist but she never responded to it! I also read that’s tidy and made sense to me…

TwithBC profile image
TwithBC

no, no reason other than I’m a realist—and want to be prepared and this community teaches me so much firm everyone’s personal experience! So encouraging that you are not having much negative reactions to the maximum dose— I just learned that there is different doses — did you start out on maximum… (I didn’t know Ibrance can thin hair!) BEEEST to you for a looong NEAD journey!

NPmary profile image
NPmary

I dont understand continuing letrozole if it stopped working, my understanding is that standard of care would be switching to faslodex and possibly starting lbrance as well. I would ask your doc about their reasoning g or perhaps you misheard???6 years NED one med is Exceptional! Good for you.

TwithBC profile image
TwithBC in reply toNPmary

I agree …. And why I originally posted … totally agree; doesn’t make sense. I was thinking I just didn’t understand Ibrance …

NPmary profile image
NPmary in reply toTwithBC

Meant to say 7 years (not 6) NED! Amazing!Ibrance works differently than letrozole.Ibrance is CDK4/6 Inhibitor - it messes with the cancer cell wall Proteins. Letrozole is an aromatase inhibitor itinterferes with aromatase which is involved in producing estrogen. When letrozole fails people usually are put on faslodex which inhibits estrogen in a different way.

Wish you the best, Let us know how it goes.

🌺

TwithBC profile image
TwithBC in reply toNPmary

Thank you for explaining that!

13plus profile image
13plus

So it was great the Letrozole worked for you and for so long by itself. If they need to switch your protocol due to progression though, and put you on IBrance , it’s a bit strange to keep you on Letrozole. Normally if one drug fails they switch them. IBrance works best (that’s how it was designed) when it’s paired with one of the hormonal drugs so Faslodex would be a great alternative to Letrozole

TwithBC profile image
TwithBC in reply to13plus

I’m so thankful for this group — I agree. And I really feel Faodex is my next step… ‘a feel great about the decision. Thank you for taking the time to comment — so thankful.

wendle3007 profile image
wendle3007

I was put on letrozole and Ibrance at the same time. As others have said, Ibrance needs an AI to work well. Been on this combination for 18months and stable

TwithBC profile image
TwithBC

stable is goooood! :)

CyndiA profile image
CyndiA

I've been on both for 3 years. I went from progression to no evidence of Mets. I don't mind the Ibrance at all. The Letrozole is trying to kill me with side effects.

TwithBC profile image
TwithBC in reply toCyndiA

yeah been on Letrole almost 6 years — i went from 45 to 87 …I hope it’s not that that bad for you—I had some bad weeks and then the bone pain would vanish and then it was a week of odd muscle pain then — a month if no pain at all. Hope that it eases up for you. From what I read it really does over time.

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