Aromasin

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Changed
Changed Member Posts: 7
edited October 2018 in IDC (Invasive Ductal Carcinoma)

Hi Ladies. Well here it is. I am 3 years out from B mastectomy and TAH for IDC and DCIS. Intermediate oncotype but choose not to do chemo. Foolish or not, the window is closed. I have ad ADE on all 3 the the Ai I have had so far... Tamoxifen - crippling joint pain and COLD as ice, lasted 2 weeks. Arimidex: Headaches, joint pain, cold as ice water. Femara: lasted the longest but suffered with joint pain, severe headache which increased to everyday. I actually thought I had a brain tumor. I was actually thinking it would be better to die. Lots of work, specialists, tests and turned out it was the drug. Now off this for 2 months and feeling better, more myself, but know I need to start aromasin. I am terrified of having similar side effects. Terrified of headaches again. Any one out there have words of wisdom?

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  • Lea7777
    Lea7777 Member Posts: 274
    edited May 2018

    May not be that helpful of words of wisdom, but if Aromasin has side effects, could you try Evista?

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  • Meow13
    Meow13 Member Posts: 4,859
    edited May 2018

    Well, I can relate to headache, eye sinus problems on exemestane generic aromasin. My joint pain worsened over the year and a half I was taking anastrozole. Never tried tamoxifen or letrozole. There may be others, what does your mo have to say? Is there something that can relirve your headaches while doing AIs?

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  • Changed
    Changed Member Posts: 7
    edited May 2018

    You know, I had that same question! I got a blank stare and no real answer from my oncologist. I may research this more. Thank you.

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  • Changed
    Changed Member Posts: 7
    edited May 2018

    I tried so many things for the headache including migraine meds like imitrex, narcotics (yuck), herb/vitamins and even B complex infusion, diet restrictions and logging to see what triggers I could find. Personally I think it is the lack of estrogen causing them. I am sorry you have found joint pain too. I have had some relief with turmeric 1200mg a day with that but it took about 3 months to decrease the pain. It is nice not to be alone.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited May 2018

    Changed, I believe it, the only relirf I got was getting off the drugs. Some mentioned claritin for the joint paint I never tried it.

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  • KRWS
    KRWS Member Posts: 4
    edited May 2018

    I took anastrozole for ~7 months and carpal tunnel pain & finger numbness was awful.along with shoulder & neck pain Had a 3 week break then dr started me on exemestane. Have been on it for 5 months.Side effects of muscle & joint pain are still there but at a lower intensity, a bit more tolerable Trying to exercise & stretching which is supposed to help. It's tough most days but I am moving better now. So good luck but keep moving

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  • Changed
    Changed Member Posts: 7
    edited May 2018

    Thank you fro the feedback KRWS. It is at least encouraging to know. I have found help in general with turmeric too while taking the AI. Getting braver....

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  • Changed
    Changed Member Posts: 7
    edited May 2018

    Meow 13, I am so sorry you had to get off of everything. It is a hard choice and one few outsiders understand. I am a person of faith and find that only true acceptable is unearthly or through experience. Thank you ladies for your help in this struggle.


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  • KRWS
    KRWS Member Posts: 4
    edited October 2018

    hi Changed

    It’s been a while since I’ve been on here. Sorry to hear your side effects are not great. It turns out all AIs pretty much result in the same effects but just different intensities. So this past summer I’ve had hip bursitis in right hip (thankfully not both!) couldn’t walk ( you know do the weight bearing exercise!) for several weeks but went to PT and did all the exercises & it slowly got better. Back to walking the dog 2 miles a day.

    Something you might find helpful is yoga but you need to find the right instructor. So one who understands your issues and starts you out gently. Been dong it for over a month now and what a difference. The slow stretching helps so much with the joint pain. But now I have a new annoying pain my ankles ache when I get up in the morning & occasionally through out the day. If i sit down & put my feet up for a bit it helps but I can’t do this all day! My yoga lady is trying to find the right move to help but it comes & goes. I thought I was crazy about this ankle pain but I read somewhere else that it’s a side effect. Made me feel better I’m not alone.

    Talks to my oncologist who understands. She said I have to find the right amount of exercise. Not too much not too little. Joint pain has slowly gotten better but new one like my ankles crop up.

    FeEl better & know you are not alone

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