Just diagnosed, questions about aromitase inhibitors

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munchiesmom
munchiesmom Member Posts: 1
edited August 2018 in Just Diagnosed

Biopsy came back today... doc said its a low grade breast cancer which is favorable, hormone positive, low division rate, HR2 negative. Meeting with surgeon beginning of August. Doc said will take aromatase inhibitors after surgery. I've been reading about these inhibitors and don't like what I'm reading about the side effects. I'm now researching what happens if I don't take them, and looking into alternative things. Does anyone have experience with these aromatase inhibitors? Are their women here who have decided not to take them and why? Is anyone using alternative medicine and what has been your experience?

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  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2018

    Every med has side effects. I took Tamoxifen because I was borderline osteoporosis but I did start with Arimidex. The problem with Arimidex is it attacks the bones so my MO switched me to Tamoxifen. I did have joint pain and difficulty concentrating at times. I do know women who had debilitating side effects do every woman is different.

    I also know someone who started taking them and quit when the SEs got to be too painful. She is 10 years out from her DX. She also had a MX.

    There are a number of drugs your doctor can prescribe if the SEs are intolerable.

    Frankly I was afraid not to take them but it’s your call. Discuss your concerns with your doctor and know despite what your doctor advises the decision is yours. Your life, your body.

    Good luck whatever you decide.

    Diane
  • Runrcrb
    Runrcrb Member Posts: 577
    edited July 2018

    Muchiesmom,

    Dont make a decision based solely on what you read online. Even on these threads you will see more of the negative than positive. Women with little or no side effects rarely post about it.

    Get your full diagnosis and talk to your doctors about everything they recommend. Ask about the pros and cons, long and short term risks,etc.

    I’m on an AI and am managing side effects. Regardless of your decision, if you don’t already, start exercising. Exercise will help you through the treatments and the afterwards.

    There is a thread called Doing Well on Aromatase Inhibitors- check it out

  • Ingerp
    Ingerp Member Posts: 2,624
    edited July 2018

    Just wanted to chime in that at my last follow-up with my BS we started talking general treatment stuff. He is a HUGE believer in AIs. In fact, he said if it were a family member who was refusing to take one, he'd grind it up and put it in her oatmeal. This isn't even his area of treatment, but he knows the research, knows the probabilities, and with that one sentence completely convinced me I have to take them when it's time.

  • dtad
    dtad Member Posts: 2,323
    edited July 2018

    Munchiesmom...to answer your question, yes there are those that refuse to take them. I'm one of them. I do several things to lower my estrogen naturally. Its a very personal decision and I'm not trying to influence you either way. Good luck in your decision making.

  • letsgogolf
    letsgogolf Member Posts: 263
    edited July 2018

    munchiesmom I have been taking an aromatase inhibitor for over a year and my sister has taken the same for over 3 years. Neither of us have any side effects. Many people handle these drugs without an issue. I think we just hear from the ones who have issues, honestly.

  • Denise-G
    Denise-G Member Posts: 1,777
    edited July 2018

    munchiesmom - I am a HUGE believer in Aromatase Inhibitor drugs. My sister and I are both on them - me for 6 years, she for 2.5 years. We have joint pain sometimes - winter is the worst. BUT all things considered, it is worth it. We thank God every time we swallow the pill that it cuts our risk for recurrence. GOOD LUCK!

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited July 2018

    I have to admit, when i heard about all the possible side effects i was very tempted to just turn them down. Well, until my MO showed me that my risk of recurrence without the AI was >30%!!! I decided REAL QUICK to take my chances.

    I've been on Femara (letrozole) for 2-1/2 years now with ZERO side effects. Zero. If the time comes that I have severe side effects I'll have to do some serious consideration. But i am so glad that i didn't let random internet strangers talk me out of trying this life-saving drug.

  • Polly413
    Polly413 Member Posts: 124
    edited July 2018

    I was very hesitant about Ai's also as I believe I got breast cancer from 10 years of hormone replacement pills and went deaf in my 20's from antibiotics give to me when I was a little child -- i.e., I avoid drugs as much as I can. But with BC, my breast surgeon, and both my MO's (from different cancer centers) told me that of the 3 post surgery recommendations for me : chemo, radiation and AI's, the most important one for me was AI's. That was very persuasive. What finally did the trick was that it made sense to me that starting it did not commit me to anything: I could stop taking the AI if the SE's were unbearable. So I started letrozole in mid Feb of this year and I have only had some mild joint and muscle pain that comes and goes and is relieved to some extent by the supplement turmeric. And I am 73 (and already was getting some stiffness from arthritis prior to dx) and according to the insert with the drug, older patients like me should expect the worse SE's. So if you are younger, you may have no SE's at all. lt can't hurt to try the AI. You can always quit. Good luck with your decision. Polly

  • Lea7777
    Lea7777 Member Posts: 274
    edited July 2018

    munchiesmom - There are 3 AIs to give a try. If you cannot tolerate the side effects of #1, stop it and try the next one. I have been unsuccessful with 2 of the AIs, but am glad I tried them. Have not yet started a 3rd. SEs were very, very different for each of the 2 AIs with me, indicating they affect you (or at least me) differently. So SEs also can vary greatly or be absent with one of the AIs.

    Aspirin is a natural AI and studies show it can reduce BC by 16%. I drink decaf Brassica green tea with TrueBroc to help. I don't think either of those offer anywhere near the risk reduction of AIs.

    Pages and pages of women doing ok on AIs, as evidenced here: https://community.breastcancer.org/forum/78/topics...

    This thread on reducing the SEs of AIs might also be of interest: https://community.breastcancer.org/forum/78/topics...

    The above thread strays to the subject of prunes and Theodore Roosevelt National Park of all things, and here's a tidbit on the steel cut oats that are also mentioned. I have discovered shredded wheat without sugar has even more fiber and whole grain than steel cut oats without the cooking hassle. Maybe everyone already knew that.

    Very best of luck to you, Munchiesmom, with your chemoprevention decisions and treatment. This is a very informative and helpful site to help make sense of difficult times.

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

    I had side effects with both anastrozole and exemestane. Different ones, exemestane I had weight gain and eye issues. Anastrozole I had very severe joint pain. I have been off at least 2 years but still have joint pain not nearly as bad.

  • knittingPT
    knittingPT Member Posts: 156
    edited August 2018

    I just wanted to give you a "happy" story about AIs. I have been taking letrozole since 2015 and have had very little side effects. I do have occasional joint stiffness/pain that wasn't there pre-cancer but it is manageable! Everybody's body responds differently and many people do well on these medications. You won't know until you try. The most important thing is to be honest with your provider so they can help you manage. I know people who had horrible side effects with letrozole but did great on other drugs and vice versa. Each of us is different.

  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited August 2018

    I've been on Femara for 6 years and I hope I'm on it for another 60 or so. It's a very, very powerful weapon in the arsenal to keep the beast chained up in the cave. In the first few months I noticed some pain and stiffness in my hands and other joints, but either that's gone or I've just gotten used to it. Exercise helps a lot.

  • sweetp6217
    sweetp6217 Member Posts: 365
    edited August 2018

    I'm on my 4th month of Letrozole and I have to wonder if I'm one of the few that is still working full time. I thought that getting through the last two TCH sessions/six weeks was bad, but the fact that things aren't improving are bumming me out. I probably wasted my time doing PT for 12 appointments along with all the exercise that came with it (at home). My back is worse than it's ever been, not to mention localized neuropathy of the feet. They keep telling me that with each treatment I get, side effects will happen, but the cure and the hope of no recurrence makes it all worthwhile.

    There, I said it and of course, no two people are alike, so I hope and pray that no one else has SE that last.

    Hugs

  • DebAL
    DebAL Member Posts: 877
    edited August 2018

    munch, your decision. ( aren't we all just "over" making decisions?!) What you read can be very scary. It comes down to what you believe is best risk vs benefit. As we have said a million times no matter what we do and until there is a cure, this disease can come back. Make the decision that will free your mind with the least worry possible.

    I've been on AI for 2 months. Still early. Hot flash or 2 every night but no worse than with chemo. Sure joints hurt a little but I'm not sure if it's normal aches and pains I would have anyway, is it the med, or because I'm exercising so much. Not sure but considering stopping it. I feel really good!

    Best wishes. Go with your gut and your decision should lead you to the least amount of worry possible

  • DebAL
    DebAL Member Posts: 877
    edited August 2018

    meant "Not" considering stopping it in the above post

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited August 2018

    Readers, please be aware of constant "phishing" campaigns, when specific open ended questions are asked, especially by a new person on their first post. This has been happening alot in 2018. We are being targeted by marketing persons for data research. If something seems out of place, report it to the mods.

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