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physically depressed due to ai & OS shot?

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after changing AI from letrozole to anastrozole I had I initially thought the side effects were more tolerable. However, it’s been about 9 months and I feel that robbing my body if every scrap of estrogen has brought me into an odd depression which seems purely physically and mental. I have zero motivation or energy to do anything. And I don’t seem to care either. I am tired to my bones as though I’m 40 years older. This is not me. I keep skipping my meds and when I do, I can actually some things done. Example - skipped Friday pill and Saturday I cleared out my garage. I then did absolutely nothing for the remaining 8 hours of the day ( the same zero energy or motivation) but at least I was better for a few hours.

I’m really struggling on this treatment. My cancer was 99% hormone positive so I feel it’s important to keep going. But I’m struggling hard and maybe only taking the pills 80% of the time now. I feel like I’m a 90 year old lady who just has no life left inside to do anything. It’s taken my vitality, my sexual health, my ambition. And seems to be getting worse. I’ve been laying in bed for 2hours and can’t find the energy to get out of bed. What the hell has happened to me?

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  • gailmary
    gailmary Member Posts: 436
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    lady, Good for you for continuing on treatment. Very important. sorry to break it to you but what you are experiencing is fairly mormal, to be expected even. Hope it doesn't metastasize. It gets worse then.

    Probably a good idea to get a prescription for antidepressant.

  • spookiesmom
    spookiesmom Member Posts: 8,178
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    Agree with Gailmary. Also check your B12 levels. Mine was low, I’d just sit, stare at the floor, thinking of all the stuff I SHOULD be doing. But didn’t.

  • elainetherese
    elainetherese Member Posts: 1,628
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    Yup, depression/fatigue on AI+ OS is totally normal. My MO prescribed a low dose of Celexa (SSRI), and I felt better almost immediately. After six years, I weaned myself off of the Celexa, and now I feel normal, finishing my eighth year of Zoladex + Aromasin. (Two more years! Two more years!)

  • wondering44
    wondering44 Member Posts: 261
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    I had the same problem on Zoladex and Letrozole. It was absolutely miserable. I was prescribed Effexor to help. I complained/bitched until I was switched to Exemestane. So far, I only have the joint aches and am back to my old self without taking the Effexor. I understand the Effexor is quite useful but takes a couple of weeks with fatigue to see a difference. I am hopeful the luck stays with the new AI without Effexor. I don't know how you have managed it as long as you have. You are a beast to stick it out like that.

    You are not alone in your depression or lack if interest in doing anything except sitting around thinking about what you should be doing. It is pretty miserable crap IMO.

  • quietgirl
    quietgirl Member Posts: 165
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    I am struggling right now to find the right words. I’m sorry you are feeling this way just doesn’t seem to cover it. The goal of the meds is to lower your estrogen but of course low estrogen can affect so many areas of your body and how you function. Depending on how your meds effect you, the skipping a day and feeling a bit better might be part psychological and not your body surging with more estrogen.
    My oncologist talks a lot about quality of life when it comes to taking meds and I feel it’s important that each of us find our own balance. If meds were a guaranteed why to prevent reoccurrence then it might be easier to deal with the effects but since they are not 100% it becomes a balance

    You( physical and mental ) have been through a lot. We all have when we are in treatment. And so much focus is often on the physical that often the mental side gets lumped with it. I would definitely talk to your oncologist on two levels first if she can put you in contact with a therapist and counselor to deal with the mental/emotional stress you are under (maybe meds would help maybe someone helping you craft a game plan for how to deal with the bad days maybe just having someone who you can say this sucks just another set of ears who can help you get through and who has experience dealing with cancer patients). On the second level just talking to the oncologist about what you are taking and whether there are alternatives in terms of meds or dosage because you have to be able to live a life while you reduce your chances of a reoccurrence not just exist ). And there might not be another option which goes back to the therapist because we need to be able to live our best life’s that doesn’t mean that side effects become instantly better, it doesn’t necessarily mean we instantly stop taking a med but it’s about making informed choices and finding ways to have joy in our life and getting help from a professional can be life changing


    I say all that. And it still sucks what you are experiencing. No matter what the reason or cause the whole situation just is another thing that zaps the energy right out of you and I truly wish you weren’t experiencing it right now.

  • laughinggull
    laughinggull Member Posts: 516
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    Hi ladyc2020,

    Depression is a very serious health concern, and if I were in your shoes, I would inmediately seek help. Psychiatrists are the experts on depression, so I would try to get a referral asap; talk to your primary doctor and discuss your symptoms; if you cannot get an appointment soon, your primary can probably give you antidepressant medication until you see a psychiatrist.

    I would also try to think of things that give you joy (or used to) and try to incorporate them in your daily life, in baby steps as you find manageable. Also fresh air, exercise (outdoors much better), connect with others....all these things help with depression.

    What you are describing is not normal at all in my experience; even if some find it normal, that is not a reason for you to not seek the help you need, and instead resign yourself to a life of endless gloom. I got my ovaries removed and started on AI at 48, and I am now 53, so I am five years down the no-estrogen road. My life is full of activity, including daily physical activity, joy and connections -although I do have side effects from the AIs, of course. Please seek help!

    Much love to you Heart

    LaughingGull

  • lillyishere
    lillyishere Member Posts: 773
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    Ladyc, I am sorry to tell you but what are you experiencing is a new normal for most of us. I have been in your shoes and OS was brutal. Please try to come up with other alternatives. I'm sharing my case: I removed the ovaries in order to stop lupron shots. It helped. I also moved from letrozole to exemestane, big help. I can say that after 3.5 years, I feel better than OS+letrozole time. Also, vitamin D and a multivitamin may fill in the gaps your body needs. Daily yoga has been so helpful to keep my body and mind sane :). Talk to your doctor about what can you do to help yourself in a healthy way without adding other meds to your liver.

  • ladyc2020
    ladyc2020 Member Posts: 87
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    gailmary - for sure I am grateful that I am not stage 4. That’s why I keep taking it. I know my complaints are pretty pathetic. Just really struggling to keep taking them due to side effects. I am going to ask about lab work as last years I had high calcium. I wonder if this is why it seems as though it is worse than ever (as in have no energy to fix dinner, breakfast, chores, work, write an email that requires no typos) ) let alone exercise. (Almost 2 years on AI and ovarian suppression now). I don’t think ssri’s work for me - had used a couple of decade ago with post portum depression and could hardly function from feeling high as a kite and dizzy all day.

  • scaredme
    scaredme Member Posts: 65
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    Correct me if I'm wrong, but I think that I remember you from babycenter.com since we were diagnosed around the same time (tomtomsmom.. lol).

    That said, I am so sorry that you are feeling this way. I have been on Lupron shots and Letrozole for 18+ months and it definitely is a tough course. The thing that I think that has really countered side effects is walking every day. I honestly find much more joint discomfort if I am unable to walk on certain days, so I know that it is related. I also take a low dose of Celexa for anxiety which could also be helping things along.

    My biggest complaints about the Letrozole has been sexual side effects and weight gain. I try not to think about the fact that my Oncologist wants me on this drug for 8.5+ more years! I have recently had some success in reversing the weight gain with careful dieting and avoiding all sweets which has made me feel better about myself again.

    I had significant lymph node involvement and a large tumor so quitting is not an option for me, but perhaps it is for you. There is also one other AI that you could try to see if it makes a difference. Best of luck to you.





  • gailmary
    gailmary Member Posts: 436
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    LadyC, NO, I don't think they are pathetic complaints. Even those chronic low level pains can really wear on you after a while, combine with the worry or depression. Yuk.

    Maybe take solace in the fact that our bodies are constantly changing.

    I complained to my primary doc yesterday and I got kinda chewed out for my Pathetic complaints. No he was not going to change my blood pressure medicine just cause I now have constant thirst and constipation since starting it. And no my coughing can't be from lung mets or BP meds. Must be acid indigestion. Unrelated. And so what if I don't want or enjoy loving dh anymore.

    Time for a new doc, ya think? The side effects just pile up. SE from meds for SE from meds for SE. And no chemo, just hormone blockers. Those trans people haven't got a clue what they are in for. They must be keeping a smidgen of estrogen going to prevent this scenario.

  • salamandra
    salamandra Member Posts: 745
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    From what you write, it sounds (maybe?) like fatigue more than depression.

    Tamoxifen totally wiped me out. I got referred to a psychiatrist and we actually tried the med they give to people to narcolepsy to try to get some energy back. It didn't work for me, but apparently it does for others so it could be worth a try seeing what your clinic's psychiatric team has to offer.

    I ended up find a different med that worked better for me (toremifene) but I consider myself really lucky. I do know people who really give every med a fair shot and their body just won't take it.

    FWIW, your stats look similar to mine. I had pretty much come to the conclusion that if my choices were tamoxifen or nothing, I would do nothing and hope for the best. I could not live my life that way, I could not keep a job, I could not support myself. So it's not pathetic at all.

  • ladyc2020
    ladyc2020 Member Posts: 87
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    hey everyone, really appreciate all the responses. I thought I sent a long reply last week but turns out I didn’t submit.

    Definitely feels more like extreme fatigue than depression. Will look at getting lab work. Am taking all sorts of vitamins already including b12.

    Tomtom- yes it’s me ☺️☺️💕💕💕

    Cant take tamoxifen.

    Im grateful for all of you and your care and insight. So sorry I didn’t reply individually and I apologize for this short response.



  • ladyc2020
    ladyc2020 Member Posts: 87
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    • I’m currently reading this book. Very interesting. Fully aware that I would take all the drugs to extend my life however, if stage 4.


    image

  • gailmary
    gailmary Member Posts: 436
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    just read a blurb about low thyroid. No wonder I'm so miserable. My thyroid levels ARE LOW. Check that out too maybe.

  • ladyc2020
    ladyc2020 Member Posts: 87
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    gailmary- oh gosh sorry to hear that. What’s the next step for you? And yeah, I do wonder if that’s why I have zero energy… next appointment is Feb 13th and will be asking

  • harley07
    harley07 Member Posts: 303
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    @ladyc - just started reading the same book. About a quarter of the way through. I don’t agree with everything she’s written but most of it seems to align with my thoughts on the healthcare industry.

    I hope you get a quick and productive resolution to your fatigue.

  • nanpr0995
    nanpr0995 Member Posts: 1
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    I know this is an old post. I’m new here. Having really bad depression and anxiety. Almost 2 years post treatment. Was on tamoxifen and had very severe mental health issues. Now on anastrozole and having same anxiety and depression. Planning on taking a break from it to see if it helps. Also been on various antidepressants and none of them are helping. I can’t living like this anymore and don’t know what to do. I don’t do anything but stay in my house. Have no energy to get things done or motivation. I don’t know if I can last another 3 years on the AI. I am losing my mind. I have no life. I’m too anxious to go out. People have said it is menopause plus the hormone blocker. This doesn’t really make me feel any better. I don’t know what to do anymore.

  • bchmom03
    bchmom03 Member Posts: 10
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    Can you find an integrative oncologist or a functional medicine dr? I know it is all so hard. I am 63, had DCIS low grade in rt breast, found during a breast reduction and ILC stage 1 grade 1, 4mm in size, ER+ and Prog+, her 2 -. Nodes negative. The ILC Was found in left breast when I had a Double mastectomy 5/2023. My recent mammogram before reduction was NORMAL. I already had a decreased quality of life related to the awful Pelvic Mesh disaster that was used in me for a low bladder in 2009. Have severe nerve damage in pelvis and other issues, painful sex, etc. I am refusing to take any AI med or tamoxifen. I have no Chronic health issues other than pelvic mesh injury and now this BC out of the blue. I have had depression and anxiety off and on since my surgical menopause at 46 yrs old. Was on a little amt of bio-identical hormones, which helped greatly. I cannot stop the vaginal estriol since it helps keep the vaginal scarring softer and we can have brief sex. My oncoDX type score was 15, Ki67 was 8. CA 27.29 marker test was 9. My med onc is not happy with me, but the odds he gave me is that with an AI my chance of NO recurrence is 96%, without the AI my chance of NO recurrence is 94%. I am not going to risk the severe side effects for 2%. Makes no sense. He recently said maybe 10% chance it could recur! Really pushing those meds. I feel for any woman who has to make the decision to take these meds. Maybe one day the medical researchers will find diff meds to help? I am doing natural supplements for now. Praying a lot and trying to find joy again. I went to cancermath.com and did the risk calculators. They helped me get some perspective. I pray you can find a good doctor to help you through all this. I do so much research on my own. Youtube has a lot of helpful info. This site does too. God bless.

  • moderators
    moderators Posts: 8,184
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    We're so sorry to hear that you're struggling, @nanpr0995, we know it's incredibly difficult. Prioritizing and managed your mental health can be so hard in the best of circumstances, but especially when you're in treatment and on medications that take such a toll. Bchmom03 had some wonderful suggestions, but it's so important to find a mental health professional who can work in tandem with your oncology team to try and find the balance that works best for you and doesn't impact your mental health and quality of life. We're all here for you, and we hope you get some relief soon.

    The Mods