How long have you been on Ibrance and Letrozole?

[DDIL1]

I am ER/PR+ Her- lobular with bone Mets and lymph. Just checking to see how long people have been on Ibrance and Letrozole before it stopped?

[Hidden]

I was on Ibrance and Arimidex (an aromatase inhibitor the same as Letrasol) for 11 months before it failed. I was diagnosed as de novo with extensive bone only mets. After 11 months I had progression to the liver. Fingers crossed that you get longer 🤞🏻

[DDIL1 in reply to Hidden]

What did you go on now?

[Hidden in reply to DDIL1]

I enrolled in a clinical study for an oral SERD (oral version of a drug very similar to Faslodex). I’m randomized to treatment with the oral SERD and ribociclib (Kisqali). I didn’t want to go straight to Faslodex plus I feel as though I’m doing my bit to save women's butts in the future!

[Hidden]

Hi DDIL1 - I was on that combo for 3.5 years....switched from Ibrance + Letrozole to Ibrance + Faslo at that time due to a couple of "new" bone mets. I do regret this to this day because I know now that this does not necessarily warrant a change...

...since that time, I've been on current treatment ( as noted: Ibrance + Faslodex) for 3.7 years. Still bone only, still feeling great, e.g. no pain, no issues....

I hope the same for you...

Best,

Lynn

[Buffwright]

I was on it from May ‘16 til March ‘20. I had Mets to bone and lung

[DDIL1 in reply to Buffwright]

That’s a pretty good run. What are you on now? Hope you’re doing well.

[Teddielottie]

I have been on that combo since Dec 2017 and still ‘stable’ on it now in 2022 . It was only approved here in the U.K. by NICE Nov that year (prior to that it was available here through trials ). I believe in the U.S. it has been around for 7 years, so there might be people on it longer there . It has worked well for me so far , and I have tolerated any side effects . Wish the same for you x

[Beryl71]

Since May 2020, tumour markers still going down from 435- 70. Qualified as stable at last scan. But I think it's individual. Best to get on with life and wait and see. Positive mindset helps I think! X

[8576]

this combination failed after one try but Verzenio and Tamoxifen, although showed a slight increase in the first round, was successful on the second. I think it would have succeeded also if given another try.

Cheers, June S.

[Shelly1009]

Same dx as you with Mets to my peritoneum. I only got about 10 months out of ibrance before I became symptomatic again. Going strong on xeloda since Feb 2021.

[FredaBlogg]

Hello!I have been on Ibrance and Letrazole since August 2020. Last scan was “stable” . I hope this helps. Xx

[DDIL1]

Thank you all for your response. It really is a crap shoot. I really appreciate the feedback

[mariootsi]

It's just so individualized how long it lasts! I wish you a long run!

[KimberlyB40]

Hi! 41 with extensive bone mets. I've been on letrozole and ibrance wine March of 2021 with minimal side effects and great response. After just 6 months my scans show no evidence of active disease. Wishing u a long run with this combo!

[love2golfwell]

I also was diagnosed with lobular bone mets only in October of 2020 and have been on Ibrance 125mg and Letrozole since that diagnosis. So far stable. Hoping for many more years as side effects have been minimal. In addition to women on this site who have been on it over 5 years, I know other women who were also stable on it for over 5 years. Sending hugs and wishes for long-term use for you with stable scans.

[DDIL1]

Thank you this gives me hope

[Kateds]

On Ibrance and letrozole for 5 and a half years. Still stable. Biggest side effects are from the letrozole, all muscular pain and joint pains controlled through exercise and pain meds. Very happy for stable disease. Diagnosed in 2016 with de novo Mets to liver.

Kate from Alabama

[DDIL1 in reply to Kateds]

Thank you. I’m on month 2 and pray I’ll get the same results. I know we are all different but hope and science is all we have

[Rona777 in reply to Kateds]

Hi Kate,I take Ibrance + Faslodex for 6 months now. Feeling very good. no side effects.

I friend of mine takes letrozole and suffers from horrible muscular pain and joint pains. It is known that Letrozole creates Osteoporosis. Should you ask your Oncologist to give you Faslodex. For success it is also very important to change diet and watch what you eat.

I have changed to a Keto diet. since I have started it, about 2.5 months ago most of the tumors have shrunk.

[Kateds in reply to Rona777]

I have thought about it and my oncologist has mentioned it. I just don’t want to abandon something that’s working. Worth the discomfort. Kate

[DDIL1]

Are you Lobular or ductual cancer?

[Cureforever]

Hi. I was on Ibrance and examestane for 1.5 years, then on ibrance and Faslodex for 0.5 years. Most women here are on ibrance and letrozole. I do not know why my MO gave me that combo. I am on Xeloda now. Good luck Marina

[Totheriver]

I have been on letrozole and Ibrance since May, 2019 and all my scans are stable.

[DDIL1]

Thank you!

[Shar313]

I’ve been on Letrozole and Ibrance since January 2019 with minimal side effects. Hope you have a long run. ❤️Sharon

[hurricaneheather]

mets to right pleura and pleural effusion dx July 2015. pluerodesis July 2015. treatment Aug 2015: Ibrance, Letrozole (Anastrozole), and Lupron (Zoladex). still on first line of treatment, 6.8 years later; (change of med, same class). stable/NEAD since March 2016.

[Kateds]

I am ductal. Very fortunate, I know, to still be here. I pray you will have a good response. My original liver lesion was 11.5 cm. With some smaller friends. Now all have shrunk and been inactive since 2016!

Kate from Alabama

[jersey-jazz in reply to Kateds]

That's wonderful! Long may it and you last!

[Kateds in reply to jersey-jazz]

Thank you, Jersey-jazz!

[Verbena1]

ER/PR/Her2+ - I was on Ibrance and Faslodex for close to a year; just came off both, however I knew they weren’t working 6 mo ago. Had tons of stabbing pain in my back, under arm and chest and knew breast mass was growing… scans confirmed lesion on spine…Just started Enhertu (forgot the name!) a week ago and although it does make me nauseous, it reduced the ridiculous pain by at least 30% or more in that short time. My oncologist has been telling me about it for months; he said that it’s a very good drug and he was absolutely right.

After I’m stable again I’m planning to go on fenben and possibly Valasta. Not sure if this is accurate yet but apparently fenben kills cancer stem cells. Anecdotally I know it helps with pain and for me, shrinking the mass - unfortunately it shot up my liver enzymes so I had to stop for now.

There are so many women I’m seeing (on some other boards online) discussing Valasta’s ability to help with pain as well.

[PJBinMI]

I was diagnosed way before meds like Ibrance. Also E+ and bone mets only, no earlier diagnosis. I got almost five years from Letrozole and then over 9 years from Faslodex. I have known other metsters who have gotten more time from Faslodex than they did from an initial AI like Letrozole. I'm now at 18 years with MBC and am on just third line treatment with Exemestane. Some of us with bone mets do well for years,not that it is all easy!

[Katie9898 in reply to PJBinMI]

That really gives me hope, as I am a newbie on Ibrance and Letrozole. Thanks for sharing!

[PJBinMI in reply to Katie9898]

Thank you! It's nice to be able to give hope to other metsters. I wish everyone with this rotten lousy cancer could do well for a long long time! I feel especially sad for the mothers who still have children who need their mommies!