Faslodex/Fulvestrant - how long on this treatment alone?

[Ntash01]

Hi all

I’m just trying to search how long some of you may have been on Faslodex for?Months/years/still going strong? Just to have these shots and nothing else is worrying atm after having a combination of dugs for quite a while.

Many seem to have found it a good treatment - 2 butt cheek shots and your good to go for the month and no pills. I had my first shots last week, after my run with Ibrance, letrozole and zoladex. Shots itself were ok (a truly wonderful nurse and fantastic advice from ladies on this site) also had zolendric acid same day - I was ill for 48 hours - I blame the IV treatment! It also felt like I had enhancements & felt a little more curvatious than usual..probs psychological!

Still upset at being off Ibrance, I’m sure it’s to do with NICE guidelines that changed Sept 2021, I’m still looking into that and when I’m assured it’s nothing to do with red tape, I shall feel so much better!

Thanks in advance all

N x

[Hidden]

Ntash, I have been on Faslodex and Ibrance since May 2018. Still here!😁 What do you mean about NICE guidelines that changed in September?All the best to you! Marjorie

[Ntash01 in reply to Hidden]

National Institute for Health and Care Excellence. Not 100% sure, but looking into it. I don’t understand why they have gotten rid of Ibrance from my treatment plan, it’s just been a shock, especially when progression was the indeterminate areas that was already there and no new spots! I was doing so well on it!

I’m hoping/praying you continue on this for many years to come & I do hope it’s treating you well… that’s important! You are not on Faslodex only as I am, this is my second line treatment and trying hard to understand this excrement I’m in!

If you don’t mind me asking….Where are your mets?

Tc N

That’s excellent news

[Hidden in reply to Ntash01]

Nash, to the bone in femur.

[Hidden]

Hi Ntash01,

I've been on Faslo for 37 months...but in combo with Ibrance, as a "second line" ("first and a half-line"?) after Ibrance + Letrozole for almost four years. My info might be relevant to you because since I "failed" in Ibrance + Letrozole forty-something months in, conventional wisdom might say the Ibrance failed along w/ the Let, but I persuaded my doc to let me remain on Ibrance while switching to Faslo....long story, let me know if you want details.

In any event, I'm pretty sure -- based on "failure" of Ibrance + Let -- that the Faslo has been working solo or only minimally boosted by Ibrance for the past 37 months...and counting...but also always feeling on the verge of a change...

I'll mention that I think there is someone in this community or the friend of someone in this community who had something like seven? nine? years of PFS on Faslo alone as a second line. After "failing" four (?) years in to a first line treatment...The anecdote is fuzzy (brain issues) but it def gave me some hope/confidence re: my second line, which has proven out...

Wishing you great success with your treatment...

Lynn

[Ntash01 in reply to Hidden]

Thank you!Interesting that you think Faslo has been working solo, my BC nurse tried to reassure me that this was a good treatment for me.

[PJBinMI]

I was diagnosed with MBC in early 2004, yes over 17 years ago, long before meds like Ibrance. Bone mets only. I got almost five years from first line Letrozole. (also on Zometa now

Xgeva for those) then over 9 years from Faslodex. I have known, face to face, other women who got more time from it than from their initial aromatase inhibitor, AI (Letrozole, Arimidex, Aromasin) I'd write more but I gotta leave for an appt my cardiologist made for me for testing....

[Ntash01 in reply to PJBinMI]

Thanks so much, and congrats on your 17 years, and many many more to come. It’s was a bit daunting to be told chemo pill after this treatment. I guess it’s a fear of the unknown and the feeling of doom.

I do hope your appointment went well… sending you some of my found positive vibes

[ScoutnFlower in reply to PJBinMI]

Thank you. 2007 for me, but in 2017 and 19 returned so now on Ibrance and Faslodex. I was wondering how long. thanks for sharing your insight. Be Well!!

[cpidacks]

I have been on Faslodex alone since March of 2019 as my first line of treatment. I have difficulty swallowing pills so my oncologist decided to try Faslodex alone. I have a tumor in my liver. My scans, which I have every 4 months, are stable. Liver function test is in the normal range and my tumor markers are also in the normal range. Minimal side effects from the shots - sometimes bruising, soreness and itching. Good luck to you and to all of us in our journey.

[Ntash01 in reply to cpidacks]

Thanks for your reply, such good news for me to know that you’ve been on this for over 2 years +. I haven’t been told about tumour markers, but I’m guessing it may not be used to gage what’s going on. Just felt strange to read everyone on Faslodex + other meds and I wasn’t! You have put my mind at ease.

Indeed…good luck to us all and long may we continue to do as well as can be expected and tolerate all that we endure with a smile. I pray with each and every challenge we grow stronger and still keep the faith.

N x