AIs, Brain Function and Mental Illness - Opting Out of Pills?

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cuddyclothes
cuddyclothes Member Posts: 160
edited March 2016 in Hormonal Therapy - Before, During, and After

I've thought a lot about taking aromatase inhibitors. I mean A LOT a lot. Another thread I posted on was extremely helpful.

My prognosis is "excellent". My Oncotype score is 3. With pills, 3.5% risk of recurrence; without, 7%. I've been on a f*ckton of medications over the years. The side effects have ALWAYS slammed me against the wall. More than one doctor has remarked on my "exquisite sensitivity" (I kid you not, that's the medical phrase). My side effects have side effects. My MO would prefer I would take AIs, but isn't pushing it.

Reading up on these drugs (on medical websites), I've become less convinced they are for me. Then I went to the American Cancer Society's website and saw this:

http://blogs.cancer.org/expertvoices/2015/10/27/do...

My brain is already compromised. I've had some mini-strokes, cerebellar atrophy due to alcoholism which in turn has given me ataxia, and I'm manic-depressive. I have memory problems, fatigue, and have been hospitalized a few times. Somehow this doesn't feel right.

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  • shelleym1
    shelleym1 Member Posts: 298
    edited January 2016

    This is just me....if that were my Oncotype score I wouldn't take any of this crap. Unfortunately, mine was a 15 which makes my recurrence score 20% WITHOUT Tamoxifen. It is 10% with Tamoxifen. So I truly feel like I don't have a choice. If I were you, I would say hell no.

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  • GypsySue
    GypsySue Member Posts: 17
    edited January 2016

    Shelly!

    Thanks for posting this very interesting blog! Last July, I had my onc to switch me from Femara to Tamoxifen due to bone loss. He was reluctant...wanted me to get Zometa (bisphosphonate) infusions. But he complied and I now take Tamoxifen. This blog makes me feel better about my decision. I wish the author would elaborate about the effect of Tamoxifen on the brain. Being stage 4 already, absolute or relative risk is not relevant for me.


    Best Wishes!

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  • Kicks
    Kicks Member Posts: 4,131
    edited January 2016

    Well - I am ADD life long (yes females - even when 'old ' can be ADD) and SAD ( Seasonal Affective Disorder) for about 15 yrs when DXd IBC. As far as I know nothing has changerd - at least according to Hubby and Son.

    We all go into ttreatments with whole life experience with already ssues. The 'baggage' we bring (and continue to follow) does. It is not fair (at least to me) to 'blame' every issue on Chemo or AIs, especially when using mind altering 'meds'.

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  • cuddyclothes
    cuddyclothes Member Posts: 160
    edited January 2016

    I don't know what you mean by 'blaming' everything on meds.

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  • marijen
    marijen Member Posts: 3,731
    edited January 2016

    Cuddyclothes - excellent article, thank you. I saved it. I will cc my MO at the appropriate time. thx

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  • windingshores
    windingshores Member Posts: 704
    edited January 2016

    Just want to make sure that anyone reading this notices that cuddyclothes has a very low Oncotype score, and so does the wife of the neuroendocrinologist on the link. In fact, her risk is 2% with and 4% without AI's and many of use might reconsider meds with risks that low.

    Most of us have higher risks.

    My own feeling- just me- was that I would try Femara first and if it had effects I could not tolerate, I would not take it. I just didn't want to abstain because of any feelings, I wanted to see a definite reason not to take them.

    As it turns out, I am still on Femara and almost done my first year. I can get off or switch to Tamoxifen at anytime. I don't think this needs to be a black and white kind of decision.

    If your Oncotype is super low, or if you have low grade DCIS and no invasive, then it seems like a consideration of not taking meds is very reasonable and maybe even healthier. Otherwise, I think it is risky not to at least try.





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  • CAMommy
    CAMommy Member Posts: 437
    edited January 2016

    I'm not in the same group because I have DCIS but I have tried both tamoxifen and Femara and they are terrible for me. I see my MO tomorrow. I know he will want to try another med but I just can't get a handle on if it's worth it. If I had more advanced disease with a high risk of recurrence I would totally take them with other meds for the side effects. But I'm not crazy about taking more drugs, with more side effects to handle the side effects of tam or AI. My risk of recurrence of either DCIS IBC is about 14% with tam or AI it is 9%. Risk of IBC is 7% without and 4.5% with meds.

    I already had my ovaries removed and I have a family history of no recurrences after IBC.

    I too am exquisitely sensitive to medications, all meds. I get side effects, and allergic reactions.

    So I'm leaning towards not taking them, but I did try, and I tried hard to take them. I'll see what DR MO says tomorrow.

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  • cuddyclothes
    cuddyclothes Member Posts: 160
    edited January 2016

    Marijen, thanks! windingshore, that is a very good point. I'll go up and highlight it, because it's an important part of the decision process. CAMommy, I'm sorry you're having that experience.

    The hardest part is my husband freaking out. His mother died of metastatic breast cancer (at 84, after having it twice many years before that). That only happened two years ago.

    GypsySue, I LOVE YOUR QUOTE!

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited January 2016

    Hi CAMommy:

    Being sensitive to many drugs, you may be interested in the discussion at page 249 near the end of this thread regarding Femara where ChiSandy, Ellelou, and others discuss the very different sets of inactive ingredients from different generic manufacturers of Femara.

    https://community.breastcancer.org/forum/78/topics...

    I would only use drugs I could get from my pharmacy in the U.S. (and never an on-line pharmacy from another country).

    BarredOwl


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  • CAMommy
    CAMommy Member Posts: 437
    edited January 2016

    thanks Barred Owl. I do have the Teva generic of Femara which is supposed to have the least side effects. I don't think my side effects are so much the med as it is the lack of estrogen. Except I think I'm allergic to tamoxifen. I believe I had a delayed allergic reaction when I wound up with unexplained Anaphlaxis and angeoedema of the tongue and wound up in the ER a few months ago after taking tamoxifen for a few weeks. ER doc said it was most likely medication induced.

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  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited January 2016

    cuddyclothes - Sorry this is so long.

    After a bilateral mastectomy for multi-focal IDC in 2011, I thought I was out of the woods when the final path report came back showing no node involvement, clear margins, and nothing on my chest wall. I'd managed to dodge both chemo and rads.

    So I was surprised when my MO told me to pick up my Rx for Arimidex. I thought I wouldn't need anything at all. She replied that even though my risk for recurrence had proven to be very small (1.5 MM tumors, no Oncotype test) I WAS 100% ER positive, and since my risk was not zero percent, she had to do her job and try to protect me the best she could.

    I did my research and kicked and screamed and whined about all the side effects I read about. But I also spent a LOT of time here on BCO listening to other sisters describe their experience on AIs, and how they managed to reduce or live with any side effects. I figured I owed myself a chance to find out if I could tolerate them. I had great BCO cheerleaders!

    I took Arimidex for a year, until the side effects became life threatening. The MO took me off it immediately, and gave me a two-month drug holiday. In the meantime, I had - at her suggestion - lost the extra 60 pounds I was carrying around. (Even thought I was post-menopausal and had a hysterectomy, estrogen is manufactured in belly fat.)

    After being off Arimidex for two months, every single side effect disappeared. Then the MO told me to go get my Rx for Femara. Rats! Thought I was off the hook again! Well, it's pretty well documented that if one drug doesn't set well with you, another one might. So I spent the next six months on Femara. Sadly, the same side effects came back.

    My next choice was Tamoxifen, and after much research, reading, discussion, and prayer, I made the decision to stop the AIs completely. I did this with the full blessing of the MO, who told me that given my specific diagnosis, it was not worth it to lose my quality of life. She said that I was one of only a handful of BC patients that she felt comfortable telling it was O.K. to stop the drugs.

    Am I worried? No. I feel great being off the AIs, and the truth is that there is not one single thing any of us can do to prevent a local or distant recurrence. Some of us ARE at a much greater risk than others. That's very important to consider.

    Ultimately, we need to listen to our doctors, seriously consider their advice, eat right, move, stay healthy, but other than that, there are no guarantees.

    Wishing you the best....

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  • cuddyclothes
    cuddyclothes Member Posts: 160
    edited January 2016

    Thanks, Blessings2011. When I picked up my clonazepam yesterday, I was also given a bottle of anastrozole. I tossed into my "pharmacy", the basket where I keep all of my drugs.

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  • hamfam
    hamfam Member Posts: 11
    edited January 2016

    That is an excellent article. I just had an oophorectomy and my doctor is debating whether I need any meds at all now (after 2 years on Tamoxifen). I was nervous about stopping meds, but this information has put my mind at ease. Thanks for sharing!!

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  • movingsoccermom
    movingsoccermom Member Posts: 225
    edited March 2016

    I tried Anastrozole for 10 days and ended up with practically every side effect, including uncontrollable, extreme headaches. I stopped then, and after consulting with my MO, won't be taking any others. Not enough benefit for me against the stunning and debilitating side effects.

    Best to everyone.

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