Aramasin/Exemestane

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Maryellen6
Maryellen6 Member Posts: 17
edited June 2014 in Hormonal Therapy - Before, During, and After

Hello, I have tried all three aromatase inhibitors and hate them all. I had double mastectomy in 2013,stage 2b, invasive lobular carcinoma with 3 lymph nodes cancerous. I also had 8 rounds of chemo,no rads and am 66 so post menopausal.

I have had severe joint bone pain and fatique on all three drugs. I took a two week break between arimedex and famara to get the drug out ofy system. But after taking exemestane for two months I stopped 2 weeks ago and the side effects are not much better. I know the exemestane has steroids in it so don't know if that is the problem. 

Does anyone know how long exemestane stays in your system? I hate these drugs and am going to ask my oncologist if I can cut the dose in half  but he will probably say no. I am also going to see if he can test the estrogen levels in my body because I had a total hysterectomy 20 years ago.How much estrogen can there be really!

Thanks for your help. These drugs are awful!

Msry Ellen

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  • doxie
    doxie Member Posts: 1,455
    edited June 2014

    I am so sorry you are having so much trouble on the AIs.  Have you discussed with your MO taking Tamoxifen?  Unfortunately our bodies produce estrogen even though we are menopausal.  Fat and other tissue produces it.  It's important on AI to keep weight at a normal level.  

    Just a note, exemestane does not have steroids in it.  It is "steroidal-like" which is confusing.  

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  • Maryellen6
    Maryellen6 Member Posts: 17
    edited June 2014

    Hi Doxie...thanks for your response.

    Yes my MO and I discussed Tamoxifen but right after my tissue expanders were exchanged for the implants in Dec. I developed blood clots in my lungs and was hospitalized and am now on Coumadin. He didn't want me on Tamoxifan due to higher risk of blood clots.

    It just seems that the exemestane side effects are taking longer to go away than the other two drugs I tried. I find the AI drugs debilitating and I feel very tired and very old,like say 90. YUK!

    I wonder how many others out there cut their drug in half and if that helps. All of the women in my support group have similar issues with AI drugs.

    I am at a good weight,maybe just about 5 pounds above what I should be. And I walk,swim and do yoga. And I don't understand how every woman is put on the same dose regardless of age,height or  weight. Makes no sense to me.

    I say enough is enough after a double mastectomy, tissue expanders for 8 months, 8 rounds of chemo and pulmonary embolisms.

    Thx for your impute.

    Mary Ellen



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  • doxie
    doxie Member Posts: 1,455
    edited June 2014

    Clearly Tamoxifen is not for you.

    I too wonder about why the one size fits all with drugs.  I always feel I'm over medicated.  I'm short, fit and at a healthy BMI.

    Have you tried OTC NSAIDs for pain relief?  Aleve worked great for me until it caused nausea.  Some women find switching from generic AI to name brand helps.  Others go on specific anti depressants or anti-seisure drugs that work to calm pain.  Have you discussed these possibilities with your MO?

    I switched to Ruth's home remedy of golden raisins and gin.  Soak the raisins in gin for a couple of weeks, then take 8-9 raisins per day depending on size.  It's helped me with muscle pain, though not the pain from visibly swollen joints in my toes.  I also had to have a cortisone shot for intense pain and lack of function caused by trigger thumb.  

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited June 2014

    the golden raisins and gin sound really fine to me, hey tasty !

    I just ended my 5 years on aromasin the end of Jan, I really did not think I was having side effects during that time and made it through!   course I hung out in my gym, about 3 or 4 times a week until this past Oct when I retired and now hang there 5 times a week with lots of swimming in there

    I have noticed that my hi BP is lower, nicely lower and that my dang feet do not ache quite as much

    do not know if this is normal or not but is has been my history, good luck to you

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