Femara, I dont think I can do this anymore.

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CidneyI
CidneyI Member Posts: 79
edited December 2016 in Hormonal Therapy - Before, During, and After

I have been on Femara for about a year now and my quality of life is cr@p.

I am so tired of my body not being able to regulate temperature, I go from broiling to freezing, nothing in between. I constantly sleep in a pool of sweat. The joint pain is getting worse every day, I feel like an 80 year old woman. I am 53 and use to be really active, now it hurts to get up from the couch. I have a dr apt next week about the pain in my feet. The physical stuff is hard to deal with but the most concerning is how I feel mentally. I think I am on the edge of depression. I am not sad or feel pity, I just have feelings of not caring about anything anymore. I don't care how I look, I don't care if I see my friends, I don't care to do any of my favorite activities. The things I am doing now is like just going through the motions because I don't want anyone to know what I don't feel. My short term memory is getting terrible. OH, I really hate the feeling I have just before an African heat flash comes on - its hard to explain, its like I have these angry feelings for a few seconds and then BAM, I am drenched in sweat. Those angry feelings go away but I hate when it happens.

I suppose I need to decide for myself what is important - getting through the next three years feeling like this or stop taking the medication and roll the dice so to speak. I talked to my dr and she said I need to be on Femara or Tamoxifen, chose my poision. I tried Tamoxfen as well, not any better.

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  • Lily55
    Lily55 Member Posts: 3,534
    edited December 2016

    Edited to clarify - I had breathlessness so bad I was sent for urgent tests on my heart, I struggled to get out of a chair as my joints were so stiff, I felt REALLY old and horrible on Femara but after lots of strugge and hassle and an unsympathetic Doctor I changed to Aromasin (this is an option for you too), it works in a different way and although I have side effects they are a lot less than when I was on Femara and emotionally I am a lot better. May I suggest you ask your Doctor if you can try this but if you do make sure you have a month of taking nothing before you start a new medication.

    According to the private Oncologist I saw Aromasin Works differently to both Arimidex and Femara.  I tried Arimidex too and that was awful for me whereas Aromasin is a lot better, in fact I would say my problems really originate from lack of oestrogen on Aromasin rather than from the drug itself, if you see the difference.......its hard to explain.

    Hope this helps......

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  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited December 2016

    You have done 2 years of therapy and it is behind you. What else can you do to lower your odds of recurrence? Hysterectomy/oophorectomy? Ovarian suppression shots? Can you take an SSRI for the next 3 years to get over the hump? There has to be alternatives. You can take any ssri with the AI's, not tamoxifen. Maybe you need a drug vacation to clear your head and make decisions.

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  • Jackster51
    Jackster51 Member Posts: 357
    edited December 2016

    My sister had to stop Femara for same reasons you mention. It had actually reduced her to having to use a walker to get around from the joint pain. She only lasted a few months on it before being switched ... to I think Aromasin as mentioned above. Definately worth investigating. I hope you find some relief soon.

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  • cive
    cive Member Posts: 709
    edited December 2016

    You are exactly correct about your thermostat being broken, that is what lack of estrogen causes, so at least you know it is working. Aromasin and Arimidex also suppress estrogen so you may find it doesn't help the thermostat thing, but perhaps you would tolerate one of them better than the Femara.

    I take one of the old tricyclic antidepressants, nortriptylene, since as well as being an anti-depressant it helps with sleep disturbances and neuropathy, which may be the problem with your foot pain.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2016

    Hi!

    Hormonal changes have always affected me mentally. I hate that! I take Aromasin, and it made me feel moody after a few weeks. My oncologist prescribed Celexa, and I've been fine ever since. I never thought I'd take an SSRI, but I was diagnosed at Stage IIIA, and I really want to do all I can to prevent a recurrence. Best wishes!

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  • gab34
    gab34 Member Posts: 5
    edited December 2016

    This is my first post here so hope I am doing it correctly.  I just started on Arimidex and already having side effects, similar to some of the ones you are experiencing.  I was on Tamoxifen for a time with side effects, so after a break I have started Arimidex.  I have tiredness, weakness, dizziness, and diahrea (sp) just want to sleep.  Memory is not good  But also seem to be losing interest in doing daily tasks, no interest in going out and so on.  I have always enjoyed reading, but I noticed after radiation I lost interest - at times seem to lack concentration.  Wondering if my system is just adjusting to the medication.  I am beginning to wonder about stopping medication and take my chances.

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  • CCS648
    CCS648 Member Posts: 41
    edited December 2016

    I am so with you. My Onc started me with exemestane (Aromasin) because he said that's got the least physical impact. But my feet hurt so bad in the mornings for a long time. I've been on it now for almost 2 years, but in the last couple of months my feet have improved tremendously, I have no idea why. I still have the joint pain, though. The anger that comes out of nowhere, the apathy, and the memory issues are very frustrating. I've been seeing a therapist that specializes in PTSD for the anger, and I think that's helping a bit, at least in terms of making me think before I spit out nasty words. My GP prescribed bupropion (Wellbutrin) (I asked for it because of the least propensity for weight gain) for me, and recently upped the dose, which has helped a bit with the apathy.

    I'm terrified of it coming back, so I will put up with a lot to make it work. In your shoes, I'd ask for Aromasin and some anti-depressants. I also find that walking a great deal helps the feet, as long as I'm wearing good shoes.

    I feel for you, and hope things improve.

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  • kbram
    kbram Member Posts: 185
    edited December 2016

    When I was on aromasin, my oncologist prescribed an anti-inflammatory called diclofenac.  It did wonders for  my joint pain!  I was able to make it thru five years of aromasin.  My oncologist said it was more important to take five years of aromasin than the consequences of taking an anti-inflammatory on a daily basis.  Please look into it for yourselves.

    Kathy

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  • CidneyI
    CidneyI Member Posts: 79
    edited December 2016

    Thank you so much for all of your replies.

    Its only been a week since I stopped taking Femara and I have to say I am starting to feel improvement. My joints still hurt but not as bad. I am beginning to feel better mentally, I am starting to FEEL as opposed to feeling like a rock. I am not a 100% being back to normal but enough to tell a difference in a good way.

    I see my oncologist in Feb. I will ask him if he can change up my meds and try what you ladies have suggested. I cant deal with the joint pain any longer as I start training in Feb for the AVON 39 mile walk. That walk is very important to me personally and for my health. I know my oncologist is not going to be too happy with me when I arrive at his office to tell him I have been off my meds since med Dec.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited December 2016

    The British have a study going which looks at cycling AI therapy with three month drug holidays. There is a theory that, if hormone driven cancer cells are given the opportunity to start growing during the anti-estrogen 'vacation', resumption of treatment will knock them down and deter metatasis (this is an oversimplification): so, Cidney is correct in her plan to let her doctor know how she is doing and consider trying one of the other agents, probably exemestane since it has a different chemistry than letrozole/anastrozole. Good luck on training for the walk!

    kbram and others who may use NSAIDs long term should be aware of potential kidney damage. Be sure your organ function is being watched or a nephrologist could be in your future...

    gab, your post was fine. Good for you in recognizing the benefit of coming here to share. Think about what the others mention in terms of getting relief via a prescription for psychotropic medication. Taking another pill might not be your preference but neither was getting this nasty disease. Hang in there. Your health is worth it.

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  • MARIONSGIRL
    MARIONSGIRL Member Posts: 59
    edited December 2016

    I was on Aromasin from March 2016 until September 2016 and started having terrible back pain so my oncologist switched me to Femara. I only lasted two months on it as the side effects were worse. I went back on Aromasin and feel much better. I also take Effexor an anti-depressant to help with the hot flashes and my moods. My oncologist feels I should take it for 10 years.

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  • Lucy26
    Lucy26 Member Posts: 2
    edited December 2016

    I have been taking Arimidex (Anastrazole) for almost 5 years and was so looking forward to being able to stop it very soon. My SE's didn't really show up until after the first year, but I have many of the same symptoms described by others here (fatigue, lack of energy/interest, joint pain, and general lethargy, etc.). At my last Dr. visit, my oncologist said that new studies show that I should take this drug for 10 years instead of only 5. I am so disappointed, and I'm not sure what to do. Mt cancer was advanced stage 3, with all of the 19 removed lymph nodes testing positive. I had dense dose chemo and radiation. All my Doctors suggest that I should continue taking the drug. My oncologist said that I could try not taking it for 30 days, but that she thinks it would be foolish to stop completely. If I stop for 30 days and find myself feeling better, I think it might be much harder to begin taking it again. Has anyone else been in this situation, and how did you handle it?

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  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2016

    Lucy, next time you see your doctor can you ask him/her where is the evidence 10 years on AI is needed for prevention? I know AI is used for stage 4 as long as it works.

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  • Lucy26
    Lucy26 Member Posts: 2
    edited December 2016

    Thank you Meow13 - I see my Doctor in Mid-January, and I will ask for more details.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2016

    The reason I ask is I have a good friend who is stage 3 really aggressive tumors lots and lots of nodes. She is over 20 years out and she is being told 5 years AI.

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2016

    Lucy, and Meow,

    We thought perhaps this article from the main Breastcancer.org site's Research News would be helpful:

    Updated ASCO Guidelines Recommend Adjuvant Hormonal Therapy for 10 Years Instead of 5

    We hope this helps and please let us know how the conversation goes with your doctor. Of course, if you have any questions or need support in the meantime, we're all here for you! Welcome, Lucy!

    --The Mods

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited December 2016

    I was told at the beginning 4 years ago I would be on the devil pill 10 years. My MO also say "you may get some joint pain". Silly doc!! He told me then to take 1200 mg calcium and 5000 vit D3, daily. I did, but stopped for a few months. Never again. I hurt so bad all over I thought I was heading for a wheelchair.

    Ask your doc if you can take them. Might really help

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  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2016

    Thanks mods and kb870 it confirms what I've seen 5 years only with AI, 10 years with tamoxifen or a mix wiith AI drugs. I feel better my onco is saying I am good and done with AI.

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  • tangandchris
    tangandchris Member Posts: 1,855
    edited December 2016

    It'll be a year for me in Feb and my pains are getting worse. I have taken 2 breaks and have told myself both times that I'm not taking it again...then I get scared and start again. I have been seeing a pain managment doctor because of this issue. I had some existing arthritis problems that have been made a 100xs worse by this medication. I now am being sent to a knee doctor because recent scans of my knees show some serious problems. I'm going to be 43 in Janurary and I feel so much older. I do see MO in FEB and we are gonna have to figure something out. The pain is bad, but I'm also dealing with the night sweats, tempature changes, brain fog and fatigue.

    I'm grateful to be here after dx of stage 3, but this is no way to live you know? My family is wondering wth is going on with me and I am too! Is this from chemo also? My body is just in terrible shape.

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