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 .

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Tamoxifen is not an aromatase inhibitor and is usually given to pre-menopausal women, with some exceptions when post-menopausal women have a reason to take it. Here is a list of aromatase inhibitors:
https://www.drugs.com/drug-class/aromatase-inhibitors.html

I hope you will try an AI. Some of us try different ones and different manufacturers. I ended up doing brand name letrozole (Femara) but most seem to do anastrazole. I and many I know did these meds without awful side effects. If you have first person relatives who died of cancer, and depending on the details of your cancer, and your Oncotype score risk, you might really benefit! Are you having genetic tests? (BRCA and others)

Members of this forum respect all choices of course, but I always feel better if people try a med and see how they react.

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I really agree, windyshores. I enjoy your sensible advice. You can't "try" surgery and see how you react--it will be a done deal by then. But medication is certainly something a person can try, and then stop. I've been on letrozole for almost 18 months with no side effects. I've come to accept that my medical choices will never be perfect, but can be conscientious and what works for me. And then I remember that really all life decisions are like that--buying a house, quitting a job, having kids--we can never see the future. So since I can't control outcomes, I just try and focus on having a good intention and authenticity.

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Initially I felt that I was just put on the “AI’s are the current guideline directed therapy for post menopause” flight, here’s your boarding pass (prescription) get on with it.

For me it was helpful to discuss all medication options and potential side effects vs benefits with my oncologist.

I have osteoporosis and high cholesterol, both can worsen with AI’s, but Tamoxifen may actually help prevent bone loss and it doesn’t affect cholesterol (but it can cause blood clots and uterine cancer among other side effects). I asked my oncologist to walk me through the benefits/side effects/risk of recurrence of each med, based specifically on me … my tumor characteristics, Oncotype, family history, osteoporosis, cholesterol, etc.
In conjunction with the oncologist I was able to make an informed decision to try Tam.
I took 20mg of Tam and after 6 weeks developed severe leg cramps, she lowered my dosage, and smooth sailing since.

I think windyshores and Miriam are spot on — try the meds, talk to your doctor, and change or stop if your quality of life tips out of balance.

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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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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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@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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It says anastrazole keeps fighting for fifteen years after completing five years of treatment go on internet

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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

Jump to this post

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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Having taken both an A.I. (Anastrozole, for 7 months) and Tamoxifen (for 5 months) before going off everything on Aug. 30, 2023, I can report that Tamoxifen is easier to tolerate and does less bad stuff to you in regards to your mental brain fog, teariness, etc. It isn't "good" because I was so fatigued that I could not stay up for more than 3 hours The main side effects were a constant urge to pee, when I took a lower dose (10 mg., every other day, 40 per week). I had such a bad time on Anastrozole that I told him I would try Tamoxifen, but I was going to tip toe into those waters. I was "okay" on 40 mg. a week (10 every other day). Everything from the waist down felt dry and itchy, but I could have stood it (although I didn't feel "normal"). The worst thing, at that point, was having to always be within 5 minutes of a bathroom. The feeling of an urgency to urinate was always there, even if it was bogus. However, on June 23rd my oncologist called me up and said I had to take 20 mg. daily (140 weekly) because the only clinical data they had that it worked was for that amount and my reliance on the 700 women in the Italian Women's Study was comparing apples to oranges, as their tumors had been "in situ" and mine had broken through, so I stepped up taking the 20 mg. pill daily. From that point on I had constant UTIs, the severe exhaustion I mentioned, which was debilitating, and the aforementioned constant urge to urinate. I did not have any "mental" side effects on Tamoxifen. Anastrozole for 7 months was a whole other thing. Teariness. Mood swings. Blurry vision. Insomnia, Excruciating back pain and pain in my frail left knee joint. Dry skin. Dry eyes. Vivid violent nightmares And then (9/15/2022) my fragile left knee joint gave up and quit working. I had to go to a joint pain clinic and have shots (32 ml of an anti-inflammatory; 6 ml of Durolane; Tramadol for pain). I was in a wheelchair from September 15 of 2022 until March of 2023 and quit taking Anastrozole, which was a tentative protection against a recurrence. However, apparently the trade-off was me not being able to walk myself to the bathroom or walk anywhere else and that trade was unacceptable to me. I did face decisions on what to do about my damaged knee. We were en route to Texas for the winter. The doctors in Illinois said they could give me an MRI to pin down exactly what had happened to my left knee, but then what? What did I want to do about it? It felt just like a meniscus tear and I was hobbling with a cane or being wheeled to my first post-operative mammogram on October 3rd (NED). I am now off all adjuvant therapy and have the opinion of 2 Texas oncologists that a woman who had been placed in a clinical trial for bad arthritis and had a badly damaged left knee joint was a bad candidate for A.I. drugs, since they are known to inflame previously injured or arthritic joints. It was, honestly, the worst pain I have ever endured in my then-76 years of life. I was denied an oncotype initially in Illinois ("You don't need one.") My Texas doctor got me my onco score and it is 29, which should have meant chemo at the outset. However, it was now 17 months past surgery. I had been off the Anastrozole for 9 months and was feeling normal again. I was talked into trying Tamoxifen and did so for 5 months. It is worth noting that, on March 7, my blood work before I got heavily into the Tamoxifen was normal. On Aug. 30, when I called in in distress and had further blood work, 10 things were not normal. If I had to select an A.I. drug to take and had any choice, I would ask for Exemestane, which seems to be tolerated better than the other 2. However, someone who was having regular and frequent MRIs of her left knee while in the MOST study from 1997 to 2020 should not have been given any of the 3 main A,I.'s. If you are a person with a family history of arthritis or any damaged joints, think long and hard before signing up for the pain you will experience taking an A.I. Tamoxifen is a better choice for an old person like me with a well-documented history of joint pain and issues.

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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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