Ibrance/Faslodex stopped working - SHARE Metastatic ...

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Ibrance/Faslodex stopped working

lynnhbtb profile image
8 Replies

Got PET/CT results last week that showed new liver mets, about four of them. Previously I had full treatment response 3 months ago. This is the first sign of progression to the liver. Prior it was to bones. I've been stage IV from original diagnosis in 2012. I started taking Ibrance/Faslodex in January/February. My dr. had me stop taking both and is recommending infusion chemotherapy (ugh!). I meet with the nurse practitioner today to go over recommended treatment. I guess this is pretty serious, but I don't feel awful.

Anyone else on a chemo regimen for liver mets? What's your experience? Any thoughts or experience from anyone about trying clinical trial in immunotherapy? Thanks for your feedback.

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lynnhbtb
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Snowcone16 profile image
Snowcone16

I was diagnosed January 2018 w Mets to bones. After 4 months on Ibrance, letrozole, I had progression to liver. 10 spots. Too small to biopsy. I am on afinitor and exastamene for a month now. I suspect it’s not working from the look of a met on my scalp. Last tune dr said one more pill option then maybe IV chemo. I went for a second opinion. They agreed w approach and mentioned xeloda too when afinitor fails.

Dianne417 profile image
Dianne417

Dear Lynnhbtb,

I am so sorry to hear that your current drug regimen has stopped working and that your cancer has now progressed to your liver, after what sounds like a full remission just three months ago. I can appreciate how discouraging this is, especially after you've had such a good run.

Before moving on to infusion chemo, I would check to see if there are any trials for which you would be a suitable candidate. This might be the perfect moment to try something like this. You always want to make sure that you're still in relatively good shape when you enter a trial, and it sounds like this is the case for you.

As I'm sure you know, immunotherapy is often not a free lunch and can have some long-lasting, detrimental side effects, even if it stops your cancer, which is not a small "if." I would explore all options before choosing immunotherapy, but that's just my personal opinion, based on what I've read.

I, too, was diagnosed with de novo MBC in December 2016 and have been in temporary remission for almost a year and a half. I've been continuing to do well on my Ibrance (100 mg) and Letrozole regimen, but when this begins to fail, a medical oncologist I consulted with at Dana-Farber suggested that I have my local medical oncologist contact her regarding possible trials for me. I am holding that as a shiny thing in my back pocket, but am hoping to stay on my current regimen as long as possible.

My thoughts are with you. I hope you will find the next best treatment that's suitable for you and that it will be successful.

lynnhbtb profile image
lynnhbtb in reply toDianne417

Thanks for your reply Dianne. This is tricky stuff. I appreciate your comments about immunotherapy. My doc is looking into trials for me as well. Not sure about particulars. I'm supposed to start regular chemo very soon, probably this week. So glad your treatment is working. I hope it continues and you don't have to pull out the shiny thing in your pocket. :-) hugs, Lynn

Dianne417 profile image
Dianne417 in reply tolynnhbtb

Dear Lynn,

One step at a time. I'm sure your doctor is eager to begin attacking the lesions in your liver. I hope that infusion chemo will work for you. Please keep us posted on your progress and thank you for your kind words.

All best,

Dianne

SeattleMom profile image
SeattleMom

Hi, Lynn.

You don't mention what your treatment protocol was in 2012; were you on that same treatment until starting on the Ibrance/letrozole combo several months ago?

Many prayers for you as you begin a new treatment; I hope you receive some useful replies from other women here who are being treated for liver mets.

All best wishes and prayers,

Linda

lynnhbtb profile image
lynnhbtb in reply toSeattleMom

Thanks, Linda. In 2012, I did neoadjuvent chemo prior to mastectomy TAC, then radiation. Then tamoxifen until I had a reaction. Then recurrence last year, cyberknife radiation to C6 spine. Then faslodex and Ibrance starting first of 2018 and now chemo scheduled again. Yes, I will check the boards for info on liver mets. You know, it's a delicate balance about too much vs. not enough information. :-) Thanks again! Good thoughts to you.

SeattleMom profile image
SeattleMom

You're right about that "need to know" conundrum. Sometimes too many of the studies and statistics can drive you crazy. For all of us, just the continuing availability of viable options keeps hope alive. God bless you, Lynn, and may He shine His healing light on you for many years to come! XXOO Linda

Sugarbaker60 profile image
Sugarbaker60

You are my shero! Eight years on Ibrance and Faslodex. I was planning my funeral when they told me I was stage four back in Oct 2020....and now I pray for the cure and believe we are closer every minute! You never know who you are going to help by sharing! We should write a loosely written book of “Tips for Tits”. (Or the loss of them). I find more help here than my team of doctors will ever share with me! I am so grateful I found y’all! That’s southern for all of you guys!!!! Peace be w us all as a new week begins.❤️

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