Will my body go back to "normal" after 5 years on AIs?

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SoLinda
SoLinda Member Posts: 120
edited June 2014 in Hormonal Therapy - Before, During, and After

I am so hoping that I will "only" have to take AI's for a total of 5 years and that I will be able to stop taking various medications. Since the whole battle began, I started taking Atenolol for arrhythmia, Warfarin (Marevan) for blood coagulation (had a pulmonary embolism after my second round of chemo), Ezetrole for extremely high cholesterol (I cannot take any kind of statin as they turned my eyes completely yellow and my joints refused to work - please don't even get me started on how awful they made me feel) ...  I now have osteopenia, my hair is falling out and I am walking around like someone who is 200 years old.  Yup, I feel special ...

I exercise and eat extremely healthily and I am not overweight.  Still, my cholesterol keeps going up and up.  It will be five years in June, 2016 that I will have been taking an AI (I took Anastrozole for 2 years and then was switched to Femara). Does anyone know if when I stop taking Femara if my cholesterol, heart - arrthymia, blood, bones, joints and hair will go back to normal? I am taking warfarin as a precautionary measure due to the fact that AI's and Tamoxifin increase the chance of deep vein thrombosis, etc. Apparently, I will be taken off warfarin when my AI torture is finished.

I really am quite worried about the out of control cholesterol - Ezetrole only brought my levels down by 10% ...

Is it worth continuing taking Letrozole if my cholesterol is so out of control and there are so many other side effects? I just don't know anymore and it seems that if cancer doesn't return because of the Letrozole, heart problems will be the next battle ...  I have read that AI's don't really increase overall survival rates because they are so hard on the heart ...  Sorry, I know I am not explaining properly!!!

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  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2014

    can you change from letrozole to a different AI? I did and cholesterol and bp is better on exemestane......

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  • Lou10
    Lou10 Member Posts: 332
    edited May 2014

    I feel your pain. May be a good idea to try exemestane if you've already tried the other two AIs. I think I read somewhere that exemestane is better for cholesterol but I may be wrong as the AIs have abducted my brain.

    Whether the benefit of taking an AI outweighs the risk depends on your cancer risk as well as other health risks (having said that, it all seems to be a bit of a crapshoot!) Did your cancer spread to the lymph nodes or was it contained in the breast? How strong are your estrogen receptors? Do you have other risk factors for a cardiovascular event? Have you raised these issues with your doc?

    Good luck.

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  • SoLinda
    SoLinda Member Posts: 120
    edited May 2014

    Lily55 - excellent suggestion, thank you! When I return to the onc. for check-up in September, I will ask about being switched to the remaining AI ...  I am so tempted to stop taking AIs altogether, but even the merest suggestion of this to any drs. makes their eyes bug out, ha ha!

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  • SoLinda
    SoLinda Member Posts: 120
    edited May 2014

    Lou10 - I hear you - AIs abducted my brain some time ago, ha ha!  I will try and do as much research as possible before I mention anything to my drs. in September which is when I return for my bi-annual check-up.  I have to go as prepared as possible because the first onc. told me that AI's absolutely don't increase cholesterol (can you hear me laughing?).  He left and was replaced by another onc. who put me on Letrozole because it was possible I would have less side effects with that.  I am experiencing the same side effects on Letrozole as Anastrozole and if anything, the hot flashes are now of the nuclear reactor type ...  However, I digress - what is really worrying me is my cholesterol (which I now take Ezetrole-Zetia) and the possibility of blood clots and the lovely arrhythmia.  In answer to your question, the estrogen receptors were 60% and the progesterone were 80%.  The cancer hadn't spread to the lymph nodes, but was found in in two separate areas of my left breast.  One had spread to the ducts and was stage 2, and the other was in situ and I was never given a stage of that one.  It's a case of damned if I do, damned if I don't ...  A crapshoot!  I keep raising these issues, but nothing much happens!  My dream is that I make it through 5 years of AIs and then never have to take the other meds. again ...  All the best to you!

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