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side effects: arimidex or ibrance?

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good evening and Beltane greetings 💖 tonight's question is: if you are experiencing se's and are taking one or more drugs, how do you establish which one is causing the effects? i've been taking arimidex & ibrance just since dec 2021 and have crashed in the last few weeks - can't get out of bed. unacceptable as i work. i've spent time reading the incredibly helpful threads for both meds but can't quite shake out how to pinpoint to even know how to approach next steps. i've already been battling fatigue & pain with fibromyalgia for years, sucks royally. PS you guys continue to blow my mind the more i read about your experiences. seriously.

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  • aprilgirl1
    aprilgirl1 Member Posts: 769
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    Hi Edge of no return, is it fatigue or joint pain or a combination of both? One thing you could try is talking to your oncologist about switching from arimidex to femara - I am not a doctor but when I took femara I remember my oncologist telling me I could switch to arimidex if I felt like I had too many side effects from femara. I believe they are both aromatase inhibitors. What is the dose of Ibrance? If you are on 125mg you can ask to lower the dose to 100mg. I would try switching the arimidex for femara first so you can see if that helps. I have found when I am trying to pinpoint a cause for discomfort to only change one thing at a time. Give it a month and see if it is better. Hope you get some relief. Please call or send a message to your oncology team tomorrow am, ok? Let us know how it goes!

  • edge_of_no_return
    edge_of_no_return Member Posts: 42
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    aprilgirl1 - thank you so much for your input 💖 last week i made the decision to stop both meds and to forgo any kind of treatment that is systemic. i've been fighting crushing fatigue and pain for years (from a variety of maladies, "fibromyalgia" being one) and just before the mets dx, was *just* starting to feel like a normal person. i was wary starting the meds, terrified of the se's, beyond depressed thinking i was going to go right back into that f*ing hole of struggling & drowning: days on end in bed, garbage piling up, laundry maybe once a month, wearing dirty clothes to work 3 days in a row. etc etc blah blah blah. it appears that my profile might just be oligometastases & i'm looking into clinical trials in the event i am eligible. i don't have fam, hubs or children and have been very clear w my mo (who is not thrilled right now) that i want quality of life over quantity. TMI i'm sure but at the moment, i feel free as a bird knowing i'm done with poisons. i'm a huge oddball out in left field, but there you have it. apologies for the long spill. hugging you as a stage 4 mets sister.

  • sondraf
    sondraf Member Posts: 1,604
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    How oglio are we talking here and where? We have the outlier ladies like exbrnxgrl and DivineMrsM who have only been on AIs for the last decade or so (the latter on arimidex itself before progression).

    I say this wondering if the Ibrance is the problem and if you are super limited in the number of spots you have, if meeting your onc half way with radiation + AI maintenance would do it. I do wonder if they are jumping the gun to Ibrance too quickly for some of us, but there is just no data yet for various prescription pathways. Have you been able to try different generics of the AI? I know that some for me (including the name brand!) give me awful joint and foot pain and others dont at all.

    You do have a complex situation and unfortunately the oncologist can only manage what they know. But we all understand here, in ways lots of medical professionals cant, that there is a real fine balance to be struck between quality and quantity of life and that balance is different for every person and should be respected.

  • amontro
    amontro Member Posts: 185
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    edge -

    Fancy meeting you here!

    I know for a fact how arimidex has affected me. I was on a long car trip with a friend driving and I realized I had not taken my arimidex for the day. I took the one pill only and within 10 minutes I began sweating profusely and feeling lousy. So that is a definite with me.

    I believe arimidex is the culprit that gives me aches and pains (muscles and bones) on and off in different parts of my body, but I can't prove it. No more long car trips for me. Not because of the arimidex; I just can't.

    Take care,

    Anna

  • edge_of_no_return
    edge_of_no_return Member Posts: 42
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    good morning friends. sondraf - excellent questions all, thank you!. right now, i have one vertebrae definitely "involved", and we are watching a spot on a rib and possibly one lung - both are being referred to as "indeterminate". *one* vertebrae - i'm very lucky at the moment. i have not tried any generic versions of either drug and i do understand from reading others' experiences that that can make all the difference in the world. i've experienced those kinds of nuances with other meds i've been taking for decades. i do not wish to try anything else, which may be a foolish decision. i do also know that my one bone met could turn into a lot and then it might be a game of whack-a-mole. my issue is not so much with pain but with fatigue. with the fibro i've had both for several years; these meds exacerbated both symptoms but it's the crushing fatigue that is a deal breaker. i've missed a couple of days of work already which is where i have to draw the line for myself. just sucks! i'm wondering if other members of our community are already on a path similar to mine? i will start a new topic & find out.

    Anna - well fancy meeting you here too! i really appreciate all of the info you continue to share. how is your jaw doing???

  • sondraf
    sondraf Member Posts: 1,604
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    Its got to be the Ibrance (has no generic) - what do your neutrophil counts look like? I struggled for months with low counts in the 0.7-0.9 range and finally 75 worked great for me for the one month I was on until I scanned and had progression. Now Lynparza doesn't affect my counts nearly as much (2.7 this week!) and I feel so much better from a fatigue standpoint.

    I do know there was one member who posted in the holistic thread - she totally walked her own path and went her own way for many many years, concerned just as you are about quality of life and she owned that it was different and why that was. And it worked for her for a long time until eventually she ended up on Ibrance/AI as the cancer growth was impacting her quite a bit and she recognized that was the time for her to go to conventional treatment. I wish I could remember her name now, I dont think she has posted in some time even before the IT migration. She also had extensive knowledge of alternative therapies and one hell of a dedicated regimen.

    I dont know of anyone using radiotherapy and the whack a mole approach as a sole primary care pathway - your body can only take so much radiation and to so many areas. I just had an area zapped that was very close to an area done two years ago and that took considerable planning and risk assessment. I also cant imagine insurance companies would be fully on board with authorizing the approach without some form of systemic treatment.

    You could ask your MO to take a month off Ibrance as a trial and see if that makes a fundamental difference to the fatigue, while continuing the AI (or trying a different one) and discussing radiotherapy for the one spot.

    Edit: the user was pipers_dream. Here is her thread (her last posts sound very much like your thinking):

    https://community.breastcancer.org/forum/121/topic...

    She hasn't signed on in a long time, but you may try messaging her and see if there is a response.


  • edge_of_no_return
    edge_of_no_return Member Posts: 42
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    sondraf - i thank you immensely for the detailed response. i feel dumb that i don't know what neutrophil is so i will check that out. and yep the thought of my insurance getting wicky if i don't toe the line is important; i opted out of meds after my lumpectomy and that was 5 years ago. i see my mo on 6/1 and that's on my list of talking points. i see the ro to get me set up for rads and will start in June for 5 sessions back-to-back. he's voiced extreme concern over my desire to skip the meds. this is all very unnerving; if i could work from home for a year would that be enough time to work through other meds to see what the results would be both in terms of se's and effectiveness? i would think not. a hundred thanks also for finding pipers_dream's thread for me. i'll check it out - this is all reconnaissance and data-gathering at this point.

    EDIT / UPDATE: neutrophil count - last labs in February showed my absolute wbc to be very good. grateful for that. thank you for sharing this granular terminology with me.