Ibrance (Palbociclib)

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  • chicagoan
    chicagoan Posts: 1,438
    edited December 2025

    @cowgal I have not heard of that. I have been on Ibrance for over 9 years. I may be switching to Orserdu/Kisqali soon due to some progression that was found on an MRI in late August. The progession did not show up on my normal CT/bone scans but was found by an MRI for my hip.

  • brutersmom
    brutersmom Posts: 1,164

    cowgal. I have been on for 3 years and was told I would remain on it for as long as I didn't have evidence of toxicity or progression.

  • I was told that same thing. I've been on it for close to 5 years.

  • per ChatGPT

    Short answer: I’ve seen very few people taken off Ibrance solely because “it’s been too long.” That rumor pops up every couple of years and then quietly dies when you look for actual evidence.

    What’s actually known

    • Ibrance (palbociclib) does not have a defined maximum duration. In metastatic HR+ breast cancer, the rule is brutally simple: stay on it as long as it’s working and tolerable.
    • There are real patients on 7–10+ years of Ibrance. They exist. They’re usually boring case reports because boring equals stable disease.
    • Long-term follow-up from PALOMA trials and real-world cohorts has not shown cumulative organ toxicity that forces discontinuation at a set time.


    What can happen over long durations:
    People are sometimes taken off Ibrance after many years, but usually for one of these reasons:

    • Chronic cytopenias that stop recovering even with dose reductions (especially neutropenia or thrombocytopenia)
    • Recurrent infections that become unsafe
    • Quality-of-life erosion someone decides is no longer worth it
    • Very rarely, bone marrow fatigue where counts never bounce back

    That’s not “toxicity from being on it too long.” That’s individual tolerance hitting a wall.

    What I have not seen

    • No guideline saying “stop at 5, 6, 9, or 10 years”
    • No oncology consensus saying long-term CDK4/6 inhibitors are inherently dangerous
    • No data suggesting elective discontinuation while NEAD improves outcomes
  • cowgal
    cowgal Posts: 634

    Thanks everyone for the responses!

  • I will have been taking Ibrance 5 years come next month. I am stable.

    Shirley

  • @cowgal @sunshinedaydream @chicagoan @aimeeeee @brutersmom Ive been MIA. It's been a rough year, with viral, bacterial, fungal and microbial infections thanks to third parties. And yes, the toxicity levels of Ibrance seem to be knocking my Absolute Neutrophils right down but i velieve i had also let my guard down about masking and social distancing when in crowds, so that also worked against me. However, I also have an Oncologist who was completely dismissive of my incessant mentioning sharp pains in my affected breast. LOL!! I think I've been through the wringer this year. And then my dear brother died. At one point I was so low, I felt I wouldn't make it to the end of 2026!!! Which of course could be true of anybody, including people who do NOT have MBC. My head has been really messed up the last 2 months. Im currently on a fluconazole regime, in an effort to get rid of a nasty fungal infection., before reducing my Ibrance.

    @cowgal what youve just shared about someone that's NEAD being taken off Ibrance due to toxicity is confusing. Like you, I imagined that if a treatment is working, then one sticks with it. Which is what I've opted to do unless and until there's evidence of progression. Its a hard knock life, being MBC. We are confronted with very difficult, confusing options.

  • chicagoan
    chicagoan Posts: 1,438

    @Rosebessie Sorry you have had such a tough year. Prayers that 2026 will be a year of peace and good health.

  • cowgal
    cowgal Posts: 634

    Rosebessie - Praying that you have a much happier and better 2026.

  • Thanks a lot @cowgal and @chicagoan . I really need a break. Love and hugs 🫂 🤗 ❤️

  • sending everyone here a Happy New Year wish for good health and lots of love!

  • brutersmom
    brutersmom Posts: 1,164

    Rosebessie what a rough time. I hope everything is uphill from here and 2026 is a much better year.

  • brutersmom
    brutersmom Posts: 1,164

    My mets returned in November 2021 but weren't confirmed until January 3rd 2022. Tonight I decided to put my diagnosis, the results of my Guardant360, and the fact that I was NED into Chatgpt. Unlike google, the results were positive. I got a good explanation of Guardant360 as it relates to my diagnosis. Most of the time I feel like because I had a metastatic pleural effusion as a primary mets I get gloom and doom. Not the case this time with chatgpt. Definitely not cured but AI offered positive explanations put everything together.

  • @brutersmom thank you. I also pray 2026 brings positive developments. I'm happy ChatGPT gave you such encouraging feedback. 👌💕

    Wishing every a good crossover to 2026. Love and hugs

  • I just had my 21st Anniversary and 4th Anniversary of Stage 4. Am still around. Have almost lost count of Faslodex and Ibrance. It is @ 52 cycles . So stay strong, there is hope

  • bailey5
    bailey5 Posts: 30

    male breast:

    Congrats; I’m making a similar comment in hopes to give others inspiration to stay the course on I/F combo-therapy. I’m almost @ 16-year Cancerversary & in 9th year of stage 4! IK I’m very unusual & have gone thru the ambivalent feelings of this med regime helping me for “~20 months”. It was very tough to swallow with 2 young teens; that I likely would not see them graduate high school/college & all the things we endured/experienced t/o my cancer “journey” (absolutely hate that word & also October for it seems to trigger me).

    I’d love advice on two things related to job loss fueled relocation:

    1. The moving company hijacked my furniture on move day until the 1st extorted us for $5K upcharge (CA to FL); then Currently hijacked & are trying to extort us for “inflated storage costs for $6K for past 6 mos (we thought job search would not take 1+ years) & idk what price going forward will be. Do I:

    •release my 25+ years-collection of sentimental crap & release (refuse to pay) & become a minimalist & cut my losses? Or,
    •hire attorney; if yes how do I avoid that extortion/or even if they’re honest how do I control that cost; is consult free & do they give accurate estimates of cost so I can weigh the two options?

    Next topic we had no choice but to sell n move to Florida but I had to leave my dtr 27 yo behind in LA; my 24 yo son came to Fzl & has been “job-searching” rather stringing that along for 6 mos since we do not know where we will end up (we’re renting) buying a home since we’re awaiting a job offer for my 59 yo husband before buying a home. Problem with my dtr & I are that it is very difficult to go from seeing each other almost weekly to 3 wks last 8 mos? Which is prob about the same just now quality-time bs quantity-time & the time difference & surface topics of telephone conversations bs in-depth closeness we once shared. We talk less n less & stop planning visits unless I call & get airline tics which I’m running out of my own money to do that & she is on very tight budget. Idk if anyone has gone thru similar relationship changes whilst on I/F treatment which although ik im an anomaly with my NED time on I/F I cannot shake the “my days are numbered feeling”!

    Insomnia -any help I’m on gummies but cannot get FLORIDA med card to get the real “THC” ones & have exhausted use of narcotics almost to a fault I was taking too much & still wasn’t working-so I stopped that route completely & Benadryl adds to my “60 yo forgetfulness” so much so that I couldn’t remember 4-5 #’s & w/o it I can’t sleep so smtms I get exhausted & very irrationally emotional (spontaneous crying jags daily w/o situational cause)! Ugh!!

    Thanks for letting me vent & I’ve got bit of ADD so if my post is hard to follow my apologies. & thx in advance for your help (I’m not on this form often & hope (my minors failing) I remember to check back soon.
    you are all in my thoughts & prayers & I luv your insights/thoughts/stories & wish the best life for everyone that never wished to join this CA-club!

  • Rosebessie
    Rosebessie Posts: 173

    @bailey5 my name is Rose. Ive been on this platform about 3years. Allow me to be the devils advocate on the mstter of your moving costs.

    1. Don't worry about venting. We all do that. And what better place than here. I made a major move 27 years ago, and it turned out to be the WORST decision of my life. My quality of life plummeted, I lost my home, I couldn't get a job, and I've never recovered. I know your pain and anxiety. Ive come to realise thst the past is not yo be held onto. Tge future is what really matters.
    2. You are a role model in the world of MBC. Those 9 years you've survived on ibrance and letrozole are is like 30 years on a healthy person. I wish you many more years. I would say, don't worry about the future or the nedication becoming ineffective, live and enjoy each day as it comes because many people without MBC have passed in those 9 years. Enjoy your life.
    3. My 2 cents about your property in storage.…if you have the money, and the stuff has strong financial and sentimental value, tighten your belt and pay so you don't lose it. The longer you delay, the more expensive the storage gets. If you signed a delivery contract, getting lawyers will end up financially drowning you and you may still lose tge case eith legal costs on top. And if you really think about it, the moving company is actually incurring costs for as long as your property is in their storage. Finally if you take too long to get your stuff, it may start deteriorating and get spoilt. Also, you may choose to abandon your stuff and it eventually gets auctioned for being unclaimed or being in overdue storage. If the value doesn't offset ALL the movers costs, they can still sue you for the difference.
    4. Im sorry about the distance from your beloved daughter. That must be hard. Youre going through a very rough time.
    5. I'm sending best wishes, love, and hugs. 🫂❤️🤗🙏🏻💖
  • bailey5
    bailey5 Posts: 30

    rose:

    Thank you:

    Sorry about your never recovering; I feel that way; but I applaud your support/advice to me.

    Too funny, I feel all alone without one person. In the world who cares-it’s not a full-moon but having a huge pity day. Husband said I was a “rat-fink”for looking in his phone-not checking on his texts etc…just looking up the “sent box” he told me there was an email in it from a prospective employer.

    Now, I’m already feeling like crap Ibrance off week=typical for me. And we have shared a family email for 25 years-kids even used it at one point & yes had our passwords.
    nevertheless I got bit irrational as I’d had 2 Marguerite’s @ dinner (I typically have 1 drink per week if that. I had taken a whole Benadryl for sleep& it wasn’t workin. He also said I could leave if I wasn’t happy about him jot getting a job in over a year.

    I deleted the email app from phone; but smtms I don’t get insensitive ppl or DH’s; he new I wasn’t feeling well & I guess I’ve been cring on and off 24 hours now.

    I think husband & son are bit narcotic or have tendencies gaslight me & so they’ve kinda gone into cahoots and turned it all on me. I thought I was helping as there was a job related email he did not receive that was in our “junk folder”; wish I hadn’t said anything; but early days post surgery & when I got dx’d w/stage 4 I kinda had a pass; luv n caring kindness all around( but now since 2010’s initial diagnosis & 7+/- related surgeries the B Cataracts & B TKR surgeries all in course of two years-they were supreme caring for me.

    I guess since we’re all kinda down in dumps maybe they’re tired of being attentive to me cuz they hear NED & think-well I should go back to work (as Nurse); we’ll just bc you can doesn’t mean you should. I’ve been disable & moved around country for my 16th year RN!.
    is there I love em/I don’t luv em thread re: significant others—we used to laugh at everything all day everyday & DH approaching 60 PROB HAVING UIS 3rd midlife crisis-lol?
    well any other sites on here to just talk-about whatev—I do like the stage 4 only due to nature of death & dying. Sorry think I’m crashing-there may be a question in there if not I’ll review tomm & edit my post!

    Talk soon.

    Gd luck with dealing with ur issues if any. TBC…

  • brutersmom
    brutersmom Posts: 1,164

    Baily5. This disease sucks and sometimes brings out the worse in us and those around us. I hope things get better. My husband and I foster kittens and my husband got annoyed with me for moving the kitten create. He said they will get cold because of the air leak. The kittens wanted to look out the window. The door should be replaced but my husband gets mad every time I suggest he hire someone and get it replaced. Here is what I texted my daughter.

    "I wish I were a kitten. I tried to talk to your dad about getting the doors fixed and I am told I am exaggerating. I moved the kitten create to the door because they were trying to look out the widow and I am told there is to much cold air coming in the door and we need to put something there to block the air." (Its a french door, full glass.)

  • bailey5
    bailey5 Posts: 30

    Brutersmom:

    Awe. Thx for sharing. Sorry that occurred & the “I’m gonna call someone to replace…” typically works wonders; if not: “I called XYZ company to replace door & it only cost this much $xyz! It worked for his mom & grandmother who told me that secret.

    As we are currently entering our “late 50’s ” years; I found we started bickering. Now we lived in retirement community of homes & we also noticed that the main topic at dinner was discussing ailments-mostly the men; women wud discuss issues a bit but also had more to say about fun things. For me DH was still working; so we spent less time together.

    Fast forward a few years & into our “60-something” years & we relocated and moved across country in a car & hotels filled to & on roof w/our two doggies & had the time of our lives. Not much money due to his company laying him off. But almost no bickering occurred. Now it’s been a year since he’s home full-time & things are more intense. I think it’s misdirected anger due to his not finding employment like he thought he would have by now; but maybe I got judgemental & suspect that he didn’t want to work.
    Im ready to move on and by a house somewhere/anywhere in Florida & hes gd sitting in that & day trading which up to now has of our rent; but of course I worry about the theory “what goes up-must come down!”
    but if I catch myself with “bickering” with son or husband: I call out bickering & try to leave the room & tell them when the tone changes we can continue the discussion. It’s almost childlike game/rules; but it’s working.


    another thing they both do is speak very loudly & stand up whilst almost yelling at me& I do call that out & refuse to speak at that volume. Lastly I believe they’re both gaslighting at times. I circumvent w/my own tactics & smtms call it like it is! They also bully me a bit; thought that was for playgrounds & he’s very sensitive to that bc that was part of termination reason was “bullying” which is clearly tru at times; but not as often as other issues.

    Help!

    I’m major insomniac (any tips on that issue are welcome); so he has mornings to day-trade whilst I rest… & in afternoons we go hiking swimming movies etc & that helps in 1000 sf condo from a house=tight quarters; so allowing each other “alone time” works to lesson the tension.

    Back in the day we had other ways to relieve tension; but notsomuch since surgeries over the years we’ve just accepted that; but to be honest it’d be nice to try again (@sex) & I don’t know how to broach the subject & he doesn’t either. I figured once at new home with job then we could get back at least to that old routine & maybe the hiatus will have helped. He always said:

    “Quality vs quantity”& we found that to be true after say 5-10 years of narriage (esp w/small children around”


    also I seem to cry a lot; typically when I’m stressed & hit a wall; but it’s kinda spontaneous; full tears-notsomuch sobbing & might that be related to occasional Ativan us-I try to avoid Ativan at all; but past few days=brutal & it’s helping me sleep w/1/2 Benadryl for my allergies. But crying is almost hysterical & about 2-3 mos ago I feel I was close to whatever a breakdown feels like; but I used chat got for reality check vs going to ER & getting out on SSRIs or mood stabilizers…the side effects alone make that scary. But I was able to use techniques CHAT GOT told me about & it alienated that situation. It’s starting up again/maybe “seasonal affective disorder” or simply trying to run on 4-6 hours sleep when I’ve always been a 9-11 hr sleep person.,.

    Ok TMI. But hope I helped re: bickering/diversion & calling handyman!

    as if just having stage 4 isn’t enuf to deal with—I used to get a pass; which was nice-we’d say “oh beautiful process & help me anyway asked. Now notsomuch!


    As if dealing with stage 4 and CT’s and doctors and s/e’s wasn’t enough on our plates. Hoping for a better year in 2026. And that everyone here has a happy healthy new years!

    Thanks again for the venting,

    Thx:

    Kerry

  • Rosebessie
    Rosebessie Posts: 173

    *WHY CRYING IS GOOD FOR YOU*

    Do you sometimes allow yourself to have a good cry? Just bawling away without caring to look left and right to make sure you cannot be seen?

    Well, despite the many smiling selfies i share here, I also get weighed down and overwhelmed by my cancer journey.

    I'm NOT Superwoman.

    I'm m NOT strong.

    I'm just human.

    I'm just a woman with incurable cancer.

    I do HAVE feelings.

    And, when i get to that point.

    When i hit those times.

    I just sink and bawl my lungs out.

    *Emotional & Mental Benefits*

    1. Stress Relief: Crying helps expel stress hormones (like cortisol) and other chemicals, reducing emotional pressure.

    2. Mood Boost: It releases endorphins (natural painkillers) and oxytocin, promoting feelings of well-being and comfort.

    3. Emotional Processing: Crying is a vital way to express emotions (sadness, joy, anger) that are difficult to verbalize, aiding in healing and moving forward.

    4. Self-Soothing: The act of crying activates the parasympathetic nervous system, calming the body and lowering heart rate.

    *Physiological Benefits*

    1. Pain Relief: Endorphins released during crying act as natural pain relievers for both emotional and physical pain.

    2. Improved Breathing: The rhythmic inhales and long exhales (physiological sigh) during crying help regulate mood and stress.

    3. Detoxification: Emotional tears contain stress-related substances, effectively flushing them out of the body.

    4. Eye Health: Beyond emotional benefits, tears lubricate the eyes and contain antibacterial enzymes, keeping them healthy.

    *Social Benefits*

    1. Signals Need for Support: Crying signals to others that you need empathy and help, fostering connection and attachment.

    To those who care

    Somometimes when we meet,

    Yes, you can congratulate me for being strong.

    But honestly, im not strong.

    Sometimes,

    Just, Sometimes......

    Hold my hand,

    Walk with me,

    Because I need that physical support.

  • Rosebessie
    Rosebessie Posts: 173
    edited January 27

    @bailey5 thanks for your kind words.

    I've been feeling very low. Especially now that my PET-SCAN confirmed progression in that same ol breast. Fortunately its not in any other organ. But even so, the next step is obviously 2nd treatment line and maybe adjuvant treatment with it.

    Ive summarised my emotional rollercoaster above as i explain the importance of crying. I want to mentally depict the impact of MBC treatment

  • brutersmom
    brutersmom Posts: 1,164

    @Baily5. I would like to suggest something. Talk to you dr about your insomnia and mood. Aromatase inhibitors are brutal for me. I didn't sleep while on them. On a good night maybe 2 hours. I got horrible night sweats and my mood was awful. If I wasn't crying I wanted to hurt people. I was put on an antidepressant. It worked well but I kept needing to increase the dose until I turned into a walk zombie. I decided to switch oncology center for other reason and my new oncologist took ne off aromatase inhibitors and put me on Fulvestrant shots. Fir me that was a game changer. I don't like getting the shots but it gave me my life back. I can tolerate my husband's behavior better. He still stubborn and it is still annoying but I can deal with it better.

  • brutersmom
    brutersmom Posts: 1,164

    @Rosebessie sorry you are heading to your second line. That must be so hard. This disease just sucks.

  • Rosebessie
    Rosebessie Posts: 173
    edited January 27

    @brutersmom thanks for the encouragement. And yes, this disease sure sucks 😒

    So, ill most likely not be in the ibrance group once I move on to my 2nd line treatment. I'll miss this group . 😢😢