Ibrance and Letrezole

[Frenchgirl69]

I have been on Ibrance and Letrezole since January of 2023. I have mets to my liver. The mets have shrunk and there are no new lesions, I am afraid the medication will stop working. I am afraid I won’t live lung with this disease.

[mkrienke55]

I have only been on Ibrance and Anastrozole for two months. Mets to bones. I am also scared. My dose is being lowered to 100 mg which I am nervous about as well.

[SpicyChick in reply to mkrienke55]

I had to be lowered to 100 mg Ibrance due to severe Neutropenia. I have survived 4 + years on that dose. My dx was mets to right lung. My Onc stated anything below that mg is not very effective. So perhaps you will also do well.

[mkrienke55 in reply to SpicyChick]

My absolute neutrophil count was . 9 after the week off. I am wondering if I was borderline.

[SpicyChick in reply to mkrienke55]

I am now on the end of my stint with Ibrance. Having started 1/2017 on the highest dose, 3 on/1 off, my neutrophils dipped to 0.7 a couple of times. Then to 100 mg for quite a while with 1 week off. Now I am 100 mg 3 on, 2 weeks off as my neutropenia still dips below 1.0. Ibrance plus Letrezole gave me many good years - 5 is good, very good.

I find worrying about the 'what if' or 'end' only makes the present miserable. Don't get me wrong, I get concerned about 'what if'. It's ok to be concerned - its normal. Just don't live in that state.

My worrying won't change my diagnosis. By empowering myself with everything at my disposal I put myself back in the driver seat, things like; herbal, supplemental, spiritual, physiological, psychological, and various alternative treatments in conjunction with conventional therapies (ie; Thai Chi, Chi Gong, acupuncture, meditation, sound therapy, get-into-nature therapy, etc) Oh and Don't forget good old girl friend therapy. :). When you are in the driver seat you're in control.

Lol, I didn't plan on this being a motivational moment. It just all spilled out. I hope it helped. (cue pom pom emoticon) 🎗️

[HawaiiLulu in reply to SpicyChick]

Very good advice on worrying about what if’s

Thank you 🌹

[kiwi67 in reply to SpicyChick]

Your motivational moment is just what I need to read. I've been on Ibrance and Fulvestrant for 4 months. I have mets in my spine, lungs, liver and 1 in my left temporal region outside my brain. I have my first CT this week to see how things are going so anxiety is increasing. I don't want to waste my time worrying but its dam difficult to stop the thoughts taking over. Your story of having 5 good years is inspirational. Many thanks.

[Ashtead2 in reply to kiwi67]

I hope your scan goes well. It's difficult not to worry which as you say is a waste of our precious time. I'm the same age as you and also have mets to lungs, liver and spine. I've been on Ibrance and Letrozole since De Novo Diagnosis a year ago this week. Only small shrinkage in tumours but no progression which is good. Best wishes.

[mkrienke55 in reply to SpicyChick]

Thank you! Worrying doesn’t help! I had 22 years since my treatment for my initial diagnosis. This last few months has been a roller coaster and I need to adjust to a new normal.

[SpicyChick]

I wrote a response to 'mkrienke55' that may address your concern. I hope it helps.

Prayers for longevity and courage to face the challenges bravely.

[Mumberly]

Spicy Chick said it all 😊. Excellent insight and advice.

I’m also on ibrance and letrozole, and have liver Mets that have shrunk. I’ve been on this medication combo for a year. Prior to that I had IV chemo and then a failed attempt with kisqali because of elevated liver counts.

The power of positive thinking goes a long way.

All the best

Kim

[NeverOutOfTheFight]

Sometimes the mental game is harder than the physical one. Although everyone's journey is different, there are many of us that are doing well. I have been on Ibrance since Oct 2018, had a ddl mastectomy in Sept 2019 and achieved NED by May of 2020. Through the grace of God, my latest scans are still clear. This April, I had built up an intolerance to Femera, so I took a short break and have switched to another brand. But, still doing well. My doctor gave me some great advice.. Everyone has a clock, we are just forced to think about ours. When it is your day, it is your day. He told me to do my best to not worry about and when the time comes for the tough discussion, we will have it. You are OK today, and probably will be OK tomorrow too. After that, no one is promised more time. Best of luck to you and prayers.

[Dragonfighter]

Hi, I am 64 and have been on ibrance and letrozole for just over 3 years. I had the same fears as you but am still doing well on these meds. My oncologist has assured me there are lots of other options when the meds stop working. I was panicked at first but am learning to live with uncertainty and enjoy the moment. Still have bad days but my doctors tell me to treat this as a chronic disease and I try to do that. My best wishes for you.

[Frenchgirl69]

I appreciate all the encouragement. My oncologist says that if Ibrance fails there are two other treatments including Enhertu.

[hurricaneheather]

i do my best to live in this moment because that is all i have; the past is a part of who i am, and i want a future. i remember 8 years ago when I was told “mBC treatment is for life.” i said, “ i’ll reevaluate that statement later. right now i accept this treatment, as i want to live.” i am still here, still on first line of treatment (lowest doses)and still NEAD (for 7 years). it took the first year to quiet the mind about the ‘what if’s’ and focus on the what is. attitude and gratitude are necessity for this mind-body, especially when i am having a challenging moment.

[embrace28]

Hello frenchgirl69, I am the same as you, liver mets and supraclavicular lymph nodes in 2018. After a year and half on Ibrance (Oct 2019), i received a clear scan. You will never know how each medicine will work. Keep your faith and just take each day as a grace. Will pray for you.

[Fiercelypink]

Hang in there! Have you seen the new research on AOH1996??

[Beryl71]

Just enjoy your current progress and live life to the full. None of us can predict the future. Good luck. X