Tamoxifen and anastrozole

Posted by freebird67 @freebird67, Mar 26 10:00am

Hi all,
I have a question about these AI. I'm pretty much at the beginning of this journey, just had a lumpectomy and now waiting to start radiation. My oncologist said that I will go on a AI but did not specify which one yet. I know most of you ladies are on or have been on them so I would like to know , did they change you mentally and how did you cope with them ? I already know that they will physically 😒 I believe he wants to do this because my mother and 2 sisters had breast cancer and past away.
I lead a pretty active life at the age of 67, gardening, canning, chickens and several hobbies. I know this is long winded but this really concerns me and thinking of refusing them. Your input would be greatly appreciated .

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@einnoc

I would also add that my bone density declined from osteopaenia levels to osteoporosis. Because I am also a Type II diabetic, I had bone scans in 2017, 2019 and 2022 in May, which, I should mention, was 4 months after my Illinois oncologist put me on Anastrozole. My bone density was -1.4T at the outset and is now -2.2T. I will have another bone density test in May, 2 years since the last one, because Medicare will only pay for one every 2 years. Tamoxifen does not attack bone density. The A.I. pills do,. If an older "mature" person with arthritis takes the A.I. pills, it is almost a guarantee that they will have a decline in their bone density, but that is not true of Tamoxifen, so, for me, knowing what I know now and having experienced hell on Anastrozole, I would hold out for Exemestane (which is formulated differently from the other 2 that are recommended of the A.I. world) and/or I would take Tamoxifen, not the A.I. pills. If you don't have any arthritis (or any damaged joints...I had a bicycle injury to my left knee that was severe and a left elbow dislocated during volleyball), you might escape the horrific pain that had me up at 4 a.m. rummaging for some sort of pain reliever. Nothing really helped and nobody seemed to care that I was suffering a great deal. I even almost took the Oxycontin left over from my root canal in 2020, but I was fearful of doing that, too. It was awful. I still cannot stand or walk for very long, because of my time on Anastrozole. I have to brace my left knee to make it through the grocery store, for instance. I am semi-crippled for life.

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Oh my !! Bless your heart !
Thank you for your honest testimony. This is actually what I'm worried about. I have degenerative disk disease ,osteo, high blood pressure, up and down cholesterol. And have had a stroke. I went through menopause a few years ago and the vaginal dryness just about drove me insane ! Last week I had my
Lumpectomy , the dye they shot in me set me back in the vaginal issue. So between my other health issues and the set back I just don't know if I just want to for go it or not. I'm 67 and I think ......let me live as well as I can now. I decided a long time go after I saw what my mother and my sisters have gone through with breast cancer that I would decide for me whats best for me, I have been researching these meds and I just haven't made up my mind yet, none of it looks promising. Maybe if I were younger. I would rather live now.
You have given me a lot to think about. I know everyone is different but also not different.
Again thank you for telling me your journey. And I hope God blesses you with peace.

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@nanna1948

I was on anastrazole for five years no big deal. Exercised every morning to keep the body moving. I took it at night so any tired was easy to deal with. Some hair loss. Covered it up with color correct powder from Amazon. All in all I did fine. Doctor will decide for you. Just do it they say it stays in your body fircten years more of protection from this ugly disease. Worth it

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Would you be able to share how much hair loss? I'm super worried about the hair loss aspect of this?

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Nothing major heir loss just dimecreceding in where impart my hair. I use seche powder to cover it up. My daughter thought it was a great cover up. Take the anastrazole nothing is worth shorten your life and future is worth the hair loss. After five years you will find me and hug me. Good luck

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@nanna1948

Nothing major heir loss just dimecreceding in where impart my hair. I use seche powder to cover it up. My daughter thought it was a great cover up. Take the anastrazole nothing is worth shorten your life and future is worth the hair loss. After five years you will find me and hug me. Good luck

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I read anastrazole stays in your system and keeps working to fight off cancer for several years after you stop st five years

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Again many of us did not suffer these awful side effects. It is always hard to read about someone's suffering, and I have a hard time with most medications (and foods). But letrozole was okay for me- and for the friends I know who took an AI. I just hope that people at least try it. And since these are meds that affect hormones, side effects change over time and sometimes ease (sometimes not).

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@freebird67

Oh my !! Bless your heart !
Thank you for your honest testimony. This is actually what I'm worried about. I have degenerative disk disease ,osteo, high blood pressure, up and down cholesterol. And have had a stroke. I went through menopause a few years ago and the vaginal dryness just about drove me insane ! Last week I had my
Lumpectomy , the dye they shot in me set me back in the vaginal issue. So between my other health issues and the set back I just don't know if I just want to for go it or not. I'm 67 and I think ......let me live as well as I can now. I decided a long time go after I saw what my mother and my sisters have gone through with breast cancer that I would decide for me whats best for me, I have been researching these meds and I just haven't made up my mind yet, none of it looks promising. Maybe if I were younger. I would rather live now.
You have given me a lot to think about. I know everyone is different but also not different.
Again thank you for telling me your journey. And I hope God blesses you with peace.

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Freebird, we all react differently, but ask yourself if a 76-year-old patient is going to be as "hale and hearty" as, say, my nephew's 40 year old wife, who was put on exactly the same drug and dosage as me for the same b.c. diagnosis? It does not compute that a "mature" (oh, okay: old) person is going to do as well on these toxic substances as some others who are 20, 30 or 40 years younger. I had a decision facing me regarding "to radiate or not to radiate, that is the question." When my tumor was discovered by a good radiologist on Dec. 7, 2021, I asked her what she thought my prognosis was, and she said, "You're going to be fine. You did everything right." She was referencing my faithful annual mammograms. She suggested that I'd have a lumpectomy (which I did on 1/27/2022) and radiation. The Illinois doctor (who only saw me 2x in 8 months) prescribed 33 radiation sessions and I had been tattooed for same and was scheduled to start them in 3 days when I (belatedly) went to Iowa City to the University Hospitals and Clinics, roughly an hour and a half away, and got a second opinion. The Dr. there (who is now my only Midwestern oncologist) said, "If you had had your surgery here, we would not have radiated you." When I asked why (or why not) he said, "Because you're a woman in your 70s." (They pretty much write you off after 69; he also said, "Cancer isn't going to kill you. Something else will kill you first." And he has seen me 3 times but has never examined my breasts at all.) So, I had to go back to my home area in the Illinois Quad Cities and figure out whether to go forward with the radiation sessions or not. I contacted Dr. Goswami, who had been so encouraging and compassionate (she works in Iowa) and, even though she was not working on my case any more, as I had had to move to the Illinois side of the river closer to my home in order to commute a shorter distance for radiation, even though that hospital has been on my "do not use" list since 2018. She called me 3 times and we talked about it and I went through with the radiation because I suspected that things would not go well with the pills. And, indeed, they did not. I did try for a full year to adjust to and learn to tolerate both Anastrozole (7 months) and Tamoxifen (5 months) especially when my Texas oncologist fought to get me the oncotype that my Illinois oncologist refused to order ("You don't need one"). My oncotype score is 29, obtained 17 months too late to guide my treatment at the time. My odds of a recurrence with my 95% positive tumor is 36% if I don't take Tamoxifen for 5 years and 18% if I do. I am counting on my radiation to help protect me from a recurrence. I cannot tolerate the A.I. pills at all because of the excruciating joint pain from it. I cannot tolerate Tamoxifen because of the debilitating fatigue and the non-stop UTIs. When you are diabetic and old, a UTI infection that goes on forever is nothing to sneeze at! I had one about 5 days before New Year's Eve this year that went on forever. I took 2 strong antibiotics. Did nothing but did cause a fungal infection, which I learned can happen if you take strong antibiotics. So, I can't win for losing. I would definitely hold out for Tamoxifen, only if I had ANY bone issues, as it sounds like you have, as it was the better of the two, but, at my age, I'm not going to be told I have to take Tamoxifen until I'm 88 years old! Think about it! It is true that my mom lived to be 96, but still---- And I'm not going to be stuck in a wheelchair as a "preventative" to a possible recurrence, semi-crippled and unable to even take myself to the bathroom. Here is an article that I hope gets all of us some relief from recurrence apprehension, if the powers that be move on it fast. It is a way to determine if any cells are lying dormant in our bodies and to eliminate them, but it is in its infancy.https://www.icr.ac.uk/news-archive/research-uncovers-how-to-target-sleeping-breast-cancer-cells-and-prevent-relapse?fbclid=IwAR30J3Q-rBjOi2h653iqloUDgUD-2TV6B9qUjB2G1uLrSk2Mnxb12SCW4OY_aem_Ac_UcOuM91zMYSJF2X-kEA47-wtYrIKVQjcqT08TocMmdZp6Z-yVPtB2EKZR2x9liFgCGfYbeVjOTOcI-CDMi9za

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@windyshores

@nanna1948 where did you read that anastrozole stays in your body for 10 years? I have never heard that. I am interested since I am at year 9 from diagnosis!

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I read on internet after completing full treatment of five years on anastrazole it continues working for ten more years go on internet you need to follow full five year treatment for this success

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I had a partial mastectomy in September 2023. Surgery went well. finished 4 weeks of radiation and I did well thru that too. Then time for Anastrozole....started with headaches which did eventually subside. The mood swings, severe exhaustion, sleepless nights and joint pain are horrible. My dr is working with me to get me on meds to try to soften the affect but to be honest I don't know if you can counteract these side effects. I am now on two-week rest from the medication just to see if it's the meds causing these results, but I am sure it is. Please if anyone can give me any suggestions, I'm up for them. Good luck to you all on your journey....

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@sanantoniomimi

You are spot on about being your own best advocate.
Nobody knows your body like you do. The days of jumping when the physician says jump are over. We are all so much more educated about procedures and medications that it is best to work in concert with your doctor.
I wish you the best in your journey.
I felt blindsided when told I had breast cancer as I had no family history at all of the disease. It had been an easy journey until I recently lost my hair. We are still trying to determine what meds caused that to happen after 2.5 years.

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Which AI are you on? Strange to lose hair so late, I’m sorry you are going through this.

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@freebird67

Thank you ladies for your input. I most likely will try. I plan on arming myself with
information on most given drugs, there benifets and side effects. For me I guess with seeing what my siblings went through, it concern me a great deal. I believe knowledge is power and I must be my own advocate for quality of life. I see my oncologist the first week of April, I will see what his thoughts are and go from there.
Thanks again

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Freebies, I’m totally with you and it’s hard to get the system to discuss trade-offs and percentages of YOUR risk when the momentum is about “following the standards of care” even if some of them reduce risk minimally and the treatments can be brutal. I’m 58 - and with low risk of recurrence with just surgery, I don’t take radiation and AI side effects lightly. Like you, I’ll likely try the AIs, but I’m not going to give up who I am for an extra 2-3% of reduced risk.

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