Ibrance/Arimidex stopped working 😥

After 11 months on Ibrance and Arimidex has stopped working. It came as a big shock as I feel the best I’ve felt since I was diagnosed in Feb 2021. I was HR +/HER2 - bone only with extensive bone Mets. My bone Mets appear to be progressing although it’s not clear from the reports if its mild, moderate or major progression. Also now have multiple spots in both lobes of the liver. Too many for localized treatment. Waiting for a PET scan, liver biopsy and molecular profiling to decide the next line of treatment.

It really is like going back to when you were first diagnosed. Panic and terror not knowing what will happen next. Would like to hear from anyone who had liver Mets after being bone only.

[hopenowandtomorrow]

Dear UKCAGirl: I’m sorry that you have this progression so soon! May the God of all comfort & wisdom give you both as you navigate the next treatment options. ❤️🙏❤️

[Dragonfly2]

Oh I feel for you! Im on the same protocol as you with a very similar diagnosis...I swear I imagine pain in my liver and get the sweats just thinking about it...will have scans coming up in about a month...all I can do is think positive and enjoy what I can do now. In the meantime Ive been dry for over a year and that has made a big difference in my health...even though I don't deny myself an occasional glass of wine when Im in the beginning week of my treatment. Best of luck and prayers that you navigate these next types of treatments...you haven't run out of road yet, dear. The journey is long!

[Contrarielle]

Aw, crap! Big hug and good luck!

[stardust1965]

I had progression after two and a half years on Ibrance and Letrozole last summer. My disease is still bone only but, like you say, it is terrifying and like being diagnosed all over again. Six months on and I have settled into my new treatment and my head has settled now too (until my next scan in a few weeks). Hopefully this is just a bump in the road for you too. There are many women on this board with liver mets who seem to be doing well. Good luck with the PET scan etc. Once you know those results and have a new plan of attack I hope you will feel more in control and the “free fall” feeling will stop.Sending you virtual hugs.

Vicki

[Hidden]

What a blow, especially when you have been feeling so well.There are a good few ladies on here with recent liver involvement. I am sure they will reply with their stories.

I hope your sadness and shock will settle quickly and you get started on another treatment asap

Clare

[Rubyjude]

As Clare above has suggested, I am one of those ladies! Bone only mets when started on Ibrance, letrozole and zometa in 2020. Progression just over a year later to 2 small spots in the liver. Bones still stable. Started on Faslodex 6 weeks ago and expect a scan in another 6 weeks to see if it is working i.e. that the liver spots have not grown further. Hearing the news that Ibrance had stopped working was a real shock as I had convinced myself that I would be one of those who would have it work for at least 5 years (the power of positive thinking!). Anyway, I had a wobble for about a week but then picked myself up, as there's nothing else you can do really. Anyway, I have found Faslodex+ zometa a perfect treatment so far - no side effects for me, no pain, no fatigue, the best I've felt since starting mbc treatment. Just the tediousness of having to go to the hospital every month for the injection (almost all my previous appointments whilst on Ibrance were virtual). Well, it will be the perfect treatment if it works! Good luck with whatever comes next. Judy

[Debbigbang]

I started this journey with bone and liver. I have been on ibrance/letrozole since July. Bones are stable, but liver isn't yet. I have a CT scan today to see if it has kicked in gear and stabilized. If it hasn't I will have to move to another treatment. Not going to lie, it is worrisome when these tumors hit the organs. There are some ladies on here with the same as meself kicking it for years on the same treatment. I used to get worried about EVERYTHING. I get tired of doing that. I am getting better little by little, it's a process lol. Stay positive !!

Deb ❤🙏

[mariootsi in reply to Debbigbang]

Deb, hopeful that your scan will be good. Please update us on results.

[mariootsi]

Just wanted to send hugs and support 🤗! It is scary to switch treatment, but it could be very successful. The unknown is always a curse for us. Damn cancer!

[life8888]

Hang in there! I was also diagnosed in Feb 2021, put on ibrance + Faslodex and then 3months later + lupron, then showed progression after six months. I had liver spots show up on the PET scan, but they disappeared on my last scan after ~3 months on xeloda. Stay strong and good luck!

[Sharon0122]

I’ve been on Ibrance and Amitdrex for going on three months now. I’m going next month for my first pet scan since being on it. A little nervous about it and and am doing radiation for the met that is in my T12. My hair is thinning and now my blood pressure is high hovering between 170-180. I do have insomnia also. Good luck and staying positive is the best they say you can do. Something which is very hard for me to do. Hugs!