Can I Refuse Arimidex?

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Anonymous
Anonymous Member Posts: 1,376
edited June 2014 in Stage III Breast Cancer

I finshed chemo in Sept, on rads now and am supposed to start Arimidex when rads are finished.  Would it be too risky If I just decided not to take it?  Or is it imperative I do to prevent a recurrence?  I am really torn about this. Undecided

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  • lovemyfamilysomuch
    lovemyfamilysomuch Member Posts: 1,585
    edited November 2009

    Congrats on almost being done!  I was scared to start Arimidex, but it is going well.  Some stiffness in joints and hands, but not bad.  And, it keeps the beast away!! Do it!! In sisterhood, xo

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  • lexislove
    lexislove Member Posts: 2,645
    edited November 2009

    Shana,

    I have read that Tamoxifen can cut recurrence in ER+ bc by about 50%. the Ai's are suppose to be just as good, if not better.

    If you are scared to take it because of side effects, you can at least try it. If the se's are so bad, switch to a different AI. Remember, everyone has different se's. You may be able to tolerate it fine.

    I think it is too risky NOT to take something. JMO of course.

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  • everyminute
    everyminute Member Posts: 1,805
    edited November 2009

    In my opinion, it is too risky.  I take tamox, had the tamox metabolizing test and am an extensive metabolizer and you couldnt pay me not to take something. 

    My side effects are minimal and I have also had a hysterectomy, for the record :-)

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  • SoCalLisa
    SoCalLisa Member Posts: 13,961
    edited November 2009

    Of course you can refuse Arimidex...but is it wise...I think not...

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  • weesa
    weesa Member Posts: 707
    edited November 2009

    Shanagirl, I AM SURE BY NOW YOU ARE TOTALLY ROYALLY FED UP WITH TREATMENT.

    My random thoughts:

    I for one will vote that you do an AI. But let me ask you a question-- are you highly er and pr positive? I see you are Grade 1, and some researchers would say chemo probably had only a slight benefit for you. Rads is for local recurrence and you need to do something to protect yourself systemically. Especially if your stats are high for Er and Pr positive.

    And how do you define risk? Only God really knows if you could skip the AI's.

    My onc kept telling me the AI's were going to be the most important part of my treatment, and my diagnosis was similar to yours except I am grade 2. Anyway I struggled with the AI's for six years and so glad I did. When I get freaked out (yes, it still happens after 7 years) I look at the stats for women who do hormonals, especially stage 3 ers and think I gave this sucker a good shot.

    AI's really sucked big time for me, but there are plenty of women out there who have breezed thru them. How do you know which you will be? Don't wimp out! The good women here at this forum will help you get thru them and out the other end.

    You have done so much to insure your survival, I would hate to see you blow the last round. BTW, many women here are freaked out when they have to stop the AI's--they give you an added sense of protection.

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  • BonnieK
    BonnieK Member Posts: 655
    edited November 2009

    You can refuse Arimidex, but that would be risky.  I've been taking Arimidex since mid-March and the side effects aren't bad -- some joint stiffness at times and dry skin.  Our DX's are similar, and my oncologist said this drug will reduce my chances of a recurrence by 40-50%, so it was not much of a decision for me.  Good luck with whatever you decide.

    Bonnie

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  • Celtic_Spirit
    Celtic_Spirit Member Posts: 748
    edited November 2009

    I would butter my bread with tamoxifen if I could.

    From everything I've read, tamoxifen and the AIs are the most important part of a hormone-positive woman's treatment plan. While the side effects from an AI may or may not be sucky for you, I think the side effects from a recurrence would be worse. Just my opinion.

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  • pj12
    pj12 Member Posts: 25,402
    edited November 2009

    I consider Arimidex the most important part of my treatment, more so than surgery even.  But I am 99% ER+.  Maybe if that number were lower I would feel differently.  I am handling it well, some se's but nothing too bad.  Also the se's are not dangerous, more QOL issues.

    Think about it carefully.

    Good luck 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2009

    Ok I'm going to try the Arimidex.  You ladies have convinced me.  I am 99% ER+ so I won't take any chances. 

    Weesa    you said (Rads is for local recurrence and you need to do something to protect yourself systemically. Especially if your stats are high for Er and Pr positive)  That was enough to really make me decide to take the Arimidex.  Thank you hon!!  And thank you everyone,  I know i can refuse but now I don't want to refuse.

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  • Bugs
    Bugs Member Posts: 1,719
    edited November 2009

    Shana,

    I'm so glad you decided to give it a try.  Antihormonals are so important to us.  I'm on tamoxifan and I have very few SE's.  My onc plans on keeping me on tamoxifan til my 5th year then putting me on an AI for 5 years.  I'm all for that.  I loved Celtic's "I would butter my bread with it if I could" LOL

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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited November 2009

    Please don't. As a stage IIIer you need to hit the beast with everything.

    I got a good 3 years on Femara

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  • lovemyfamilysomuch
    lovemyfamilysomuch Member Posts: 1,585
    edited November 2009

    Butter my bread indeed LOL

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  • weesa
    weesa Member Posts: 707
    edited November 2009

    The collective wisdom of the tribe has voted...and it's unanimous.You are fortunate to have such a high er positiveness--99%. Now, Shanagirl, capitalize on this freebie gift from your pathology.

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited November 2009

    My comments are going to be a bit redundant now, as it looks like the question has been well answered. I am on Arimidex and it is not too bad, really. I am stiff if I sit too long, I get hot flashes, I am a little achey. Beats being dead though.

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited November 2009

    I agree with what everyone else has said about taking arimidex.  I have been on Arimidex now for 4 years and the only se that I have is hot flashes. 

    I love the comment on "butter my bread with it if I could" 

    Hugs

    Laura

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  • Cat1
    Cat1 Member Posts: 147
    edited November 2009

    I'll have to agree with everyone, I started Arimidex about 2 weeks ago and the sides aren't to bad.  A few aches but nothing major.  Definately stiff if you sit too long.  My onc said I could stop taking it once I have my ovaries taken out.  Don't know if they would be your case but I'm going to have it done after my reconstruction in March.  Best of luck on the sides.

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  • LittleC
    LittleC Member Posts: 151
    edited November 2009

    It is a personal decision.  I for one, am taking mine! 

    I'm glad to see you decided to give it a try!

     Kerry  aaaaaha ha ha ha       you cracked me up!

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  • Pure
    Pure Member Posts: 1,796
    edited November 2009

    butter my bread -put it on my ice cream- I am going on tamoxfin the day after I finsh chemo. No  down time for me.....  Give me it all....Have you ever noticed that many stage 2 have reoccurences and didn't do full treatment for some reason-I would take very thing and more.

    I also highly suggest just doing what you can to offset any side effects with nurtrition and yoga etc.

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  • LittleC
    LittleC Member Posts: 151
    edited November 2009

    PureE - I've entertained the same notion of reoccurance.

    sherriG - she sure does

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  • debisongbird
    debisongbird Member Posts: 275
    edited November 2009

    I haven't read all the other posts, but there are 3 AI's you could try. And if they bother you too much you could still use tamoxifin instead.

    The AI's are: Aromasin, Arimidex & Femara. They are all basically the same. I am on Aromasin, which does't give me too much trouble. But you could try one and then switch and keep switching til you found one you were comfortable with. My Onc told me the AI's don't have any impact on whether you live longer, but only on getting reoccurance. If I were you (I'm not) - I'd go for it. Better to be uncomfortable than to go through this shit again. Love and hugs, DB

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited November 2009
    Aww guys, you have put a smile on  my face! Laughing
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2011

    You guys are all so wonderful.   Girls Rule And I love the "butter my bread" advice.  I feel good about deciding to go on it.  I didn't realize how important it was systemically.  That's my big fear now.  Thanks girlgirfriends! 




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  • MammaB
    MammaB Member Posts: 4
    edited December 2010

    Not to persuade you but I have had nothing but trouble on Arimidex. Swollen joints,stiffness, trigger finger in both thumbs, severe hot flashes with night sweats. and now Cataracks that they are saying are from this AL. I would do Chemo again before I would do this to my body!  Not had much success with my onc.Everyone has to decide for themselves. I want quality life!! 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2010

    Hi everyone !  Yes, everybody has the right to refuse ANY treatment, hormonal or otherwise.  I am on Tamox for another year, and I'm very anxious and worried about taking AI's.  Have heard lots of women have severe joint pain and stiffness, so it is worth it?  What are the stats as to benefit of AI's??  Also, I know AI's will weaken bones, so then they put women on bone meds like Boniva and Fosamax.  And even those are a nightmare from the reviews I've read.  No one wants recurrence of any kind, but I don't want to feel the bone pains either.  So what do we do?

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  • jenni__ca
    jenni__ca Member Posts: 461
    edited December 2010

    also - if you are having bad side effects on arimidex ask your onc about taking a different AI - i'm one of the lucky ones - very few and mild side effects and going on 6 years on arimidex -

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2010

    Jenni_ca:  Geez, how many years are you to take arimidex?  did you start out on Tamoxifen?

     Shelly

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  • lago
    lago Member Posts: 17,186
    edited December 2010

    I will be put on arimidex after chemo. Yes I too am more scared of this then chemo but I am going to try. I expected chemo to be hell… ends up I am having an easier time than most. I just hope the same goes with arimidex.

    I do hear that the first 1-3 months can be the toughest if you get SE but many times they subside once your body gets used to them.

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  • jenni__ca
    jenni__ca Member Posts: 461
    edited December 2010

    shelly - since i was double negative (only ER+ but PR- and HER2- and post meno) - my onc started me out on arimidex ... my tumor was very large (they took out over 7 cm during lumpectomy and found almost that much after mast) he is being pretty conservative .... the two side effects i might have are stiff joints and anxiety but since i had arthristis for decades before and who doesn't get anxiety after bc??? i couldn't even say those are due to the arimidex ....

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2011

    I have been ok on it.  The terrible bone pain has lessened, which is a relief.  I have virtually no appetite, and so have not been really good about eating as healthy as I had been.  To be honest, though, Sherri,  I am just a little nervous about not being on the Arimidex.  I guess I felt like that was more of a "firewall" against recurrence or mets.

    image

    Barb

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  • allalone
    allalone Member Posts: 448
    edited January 2011
    Shanagirl : My AI script will remain in the kitchen drawer until my team can explain why I should take it if I can stop it as soon as I get SEs.
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