Have you refused AI or tamoxifan with success? I dont wanna!

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Hi everybody, Ive had my surgery, radiation is done, no lymphedema to worry about, skin is all clear and I feel pretty good.  Here is my question.  I don't want to take the AI.  It can cause heart problems, osteoporosis, hot flashes that I already have from hell, weight gain that im already suffering from since I quit smoking and ate like a little pig after each radiation treatment for 3 weeks, oinkoink. My cancer was small, slow growing, ER/PR Her2 neg and my nodes were clear.  I really don't want to take this AI. Has anybody refused and been ok with it.Im pretty angry about this because I think its just going to ruin me.  Any ideas. Thanks,Jenny

Comments

  • Momine
    Momine Member Posts: 7,859
    edited January 2014

    I would suggest that you have your onc break down how much of a benefit you will have from the AI. If you decide the benefit is significant, then I would further suggest that you try it for 3 months. If the SEs are too much, you can always stop.

  • Susie123
    Susie123 Member Posts: 804
    edited January 2014

    Hi Jenny,

    My cancer was small, slow growing, with clear nodes as well. I did take the AI for a year but stopped due to side effects. Did I do it with success? I don't know. I'm 4 years out now, but since it is slow growing anyway that may just mean it hasn't had time to get big enough to be found yet, or it could mean its not coming back. From what I've been told, we know our chosen cancer treatment was successful when we die of something else. Since mine was er/pr positive I felt like I had to at least give it a chance. I did, but quality of life issues are important too, so when I stopped 4 years early I also chose not to beat myself up over my decision..right or wrong. My best to you as you make your decision.

  • ziggypop
    ziggypop Member Posts: 1,071
    edited January 2014

    Hi Jenny, I think Momine gave great advice. It's pretty rare for people to get all of the SEs of any drug, and some people don't get any. Are you getting hot flashes now because you are in a normal menopause - I ask because post-menopausal women actually gain bone density from Tamoxifen (one of the 'good' SEs). Really though, you want to consider first how much it lowers your risk. 

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited January 2014

    Yes. (In the beginning......)

    I refused the AI for the reasons you stated, and more. Reading the posts here on BCO terrified me!

    My IDC was 1.5mm and .5mm.

    I was post-menopausal and post-hysterectomy. There couldn't be any estrogen left in my system!

    But my MO set me straight on that. Even though my risk of recurrence was small, it wasn't zero, and all she wanted me to do was try.

    I stayed on Arimidex for a year, had SEs, and switched to Femara. So far, so good. None of the same SEs as on the Arimidex.

    Oh, and those horror stories? Yes, they are true for many women, but it is also true that MANY women have few or no SEs. They just don't post here. They are out living their lives.

    Like my mama always said, "Honey, you won't know until you try."

  • Kicks
    Kicks Member Posts: 4,131
    edited January 2014

    If you're Triple Negative ("ER/PR Her2 neg") why is an AI being suggested?  Normally AIs are given to those who are ER pos. not ER neg.

    I've been on letrozole (Femara) for almost 4 yrs with basically no SEs that can directly attributed to it.  Of the SE's you mentioned - no heart issues at all, no hot flashes (but then I never had any when I went through natural menopause in 1990), and no weight gain at all.  I had been osteopenia for many years before IBC DX and TX and have progressed in the last 4 yrs to osteoporosis.  I come from a VERY strong family history of osteoporosis so it was only a matter of time til it progressed to osteoporosis anyway.  So could the letrozole/Femara have made it progress faster - yes it's possible but it also possible that in that time frame it would have progressed anyway.  No way to know for sure.  After all I'm 67.

  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited January 2014

    Going on 4 years, all's well, no regrets. The decision to take or not take an AI or tamoxifen is personal and each of us must make the best decision for ourselves with the information available. 

    *edited to add that I am still pre-menopausal

  • moni731
    moni731 Member Posts: 293
    edited January 2014

    I refused Tam and AI, but as others have said, I won't know until I die of something else. I'm almost three years out and fine so far. I was also unable to complete chemo and did not do rads. My recurrence rate was calculated to be 35%. High yes, but QOL is more important to me. I guess any advice I can give would be as Blessings2011 said, try it and stop it you can't do it. Most importantly, I feel, is to be at peace with your decision.

  • Kicks
    Kicks Member Posts: 4,131
    edited January 2014

    Again I would ask - in the OP you said you were  ER/PR Her2 neg. - so why an estrogen blocker?

  • momand2kids
    momand2kids Member Posts: 1,508
    edited January 2014

    I am at the tail end of letrozole-- ends in May--- the side effects were manageable.  I had  a slow growing tumor-- I also had an onc who believed that of all the treatments, the AI was the most important for me.  I did it all, chemo, radiation and the AI.  I do not expect this bc to come back and I have been tempted to get off the AI, but I was able to manage the side effects.  I think trying it out is a good idea, but know that the first 6 months (like any drug) can be a challenge (or maybe not).  Takes the body some time to get used to it.  

    Best of luck.  it is a hard decision, but it is yours. 

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited January 2014

    Kicks, I think it is a typo. Her profile says ER+ PR+

  • Kicks
    Kicks Member Posts: 4,131
    edited January 2014

    My Bad!  I didn't check her Profile - just went off the PO.  So many newbies never bother to post anything on it.. 

    (reminder to self - update my Profile)

  • Jenny98223
    Jenny98223 Member Posts: 13
    edited January 2014

    hi kicks..thanks..i meant er pr+

  • Jenny98223
    Jenny98223 Member Posts: 13
    edited January 2014

    thank you all for the feedback.  I guess I will try the AI and see if I handle it. I had hysterectomy in 92, menopause about ten years ago but my body has forgotten that my flashes are supposed to be a thing of the past. I have degenerative  joint disease from my neck down and don't want anything put in me to make that worse because I just cant imagine worse then I live with day to day,  The AI also raises cholesterol and I haven't been able to get mine under control even after a 40 pound weight loss. I quit smoking 3 months ago after 47 years and have gained 15 pounds and now I have to get it off because my knees are shot and the AI may add weight to me. The AI also cause heart disease.Im only 59 years ago and that scares me. Im just going to whine about it all for a bit then get over it and deal with it. I appreciate you listening to my complaining. I hope all of you are doing well with your treatments and post treatments

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