1. < Breast Cancer

Tamoxifen input

Posted by lovethedesert @lovethedesert, Jan 24, 2021

Hi All, it seems I'm getting Tamoxifen thrown at me from every direction. I'm still reluctant due what I read as side effects, short history again, partial mastectomy, stage one, in October, margins clear, lymph nodes clear, 79 years old, single, reasonably healthy except for crummy knees! What's your input? My oncologist which I finally got to see definitely ruled out chemo, said didn't think radiation was necessary, but felt to be sure no cells escaped that Tamoxifen was indicated. HELP, I'm a Libra and find decisions hard without much pondering. Thank you all my Cancer survivor Sisters.

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dkcbc24 | @dkcbc24 | Jul 12 1:01pm
In reply to @brightside21 "Had both Letrozole & Tamoxifen & likewise very different experiences but both really bad. Tamoxifen caused..." + (show)
@brightside21

Had both Letrozole & Tamoxifen & likewise very different experiences but both really bad.
Tamoxifen caused significant head & eye pain & effected my vision plus the more usual menopause probs. As the head & sight problems got progressively worse I was taken off the Tamoxifen after only a two weeks. I was told these were rare sidc effects & the drug obviously was causing these extreme issues. I stopped & within 2days ALL the side effects went.
Next I was put on Letrozole & within a hour if taking I was having problems.
I preserved as I was told I had to stay on these.
3 days later I could barely get out of bed or function.
I stuck.with it & progressively felt like my brain was shutting down.
I asked you come off it & blankly told no. Give it more time.
I continued & literally felt like I was suffering dementia.
I decided to stop for a day & see what happened. I immediately felt a bit better & so stopped for 3 days & rhgn felt back to normal.
My breast care surgeon was frantic & aside I had to go back on them. So I did & so the brain cells feeling of deteriation & lack of cognitive function just daily git worse & worse.
I stopped driving as I was totally unable to. I stopped most daily activities as I could barely look after my self & eventually decided to stop the tables.
This is were I am now.
Do I have no QUALITY OF LIFE by tsking Letrozole or refuse the tablets & risk Cancer returning which could take my life ???

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Bless your heart! Would you feel comfortable getting a second opinion? I don't know if all insurance does this but you may be able to get a second opinion through their adjunct services.

Take good care!

REPLY
mchler73 | @mchler73 | Jul 12 1:33pm

@dkcbc24
Thank you for the information. I will ask my oncologist about that medication and also do some research. Keep you posted. Take care!

REPLY
bjohnson511 | @bjohnson511 | Jul 13 7:51am
In reply to @brightside21 "Had both Letrozole & Tamoxifen & likewise very different experiences but both really bad. Tamoxifen caused..." + (show)
@brightside21

Had both Letrozole & Tamoxifen & likewise very different experiences but both really bad.
Tamoxifen caused significant head & eye pain & effected my vision plus the more usual menopause probs. As the head & sight problems got progressively worse I was taken off the Tamoxifen after only a two weeks. I was told these were rare sidc effects & the drug obviously was causing these extreme issues. I stopped & within 2days ALL the side effects went.
Next I was put on Letrozole & within a hour if taking I was having problems.
I preserved as I was told I had to stay on these.
3 days later I could barely get out of bed or function.
I stuck.with it & progressively felt like my brain was shutting down.
I asked you come off it & blankly told no. Give it more time.
I continued & literally felt like I was suffering dementia.
I decided to stop for a day & see what happened. I immediately felt a bit better & so stopped for 3 days & rhgn felt back to normal.
My breast care surgeon was frantic & aside I had to go back on them. So I did & so the brain cells feeling of deteriation & lack of cognitive function just daily git worse & worse.
I stopped driving as I was totally unable to. I stopped most daily activities as I could barely look after my self & eventually decided to stop the tables.
This is were I am now.
Do I have no QUALITY OF LIFE by tsking Letrozole or refuse the tablets & risk Cancer returning which could take my life ???

Jump to this post

I’m going through issues with my pills as well! Took Anastrozole for 5 mos now have trigger thumb and my 2 baby fingers don’t work. Joint pain. Very painful. Now he wants me to take Tamoxifen. I just can’t decide to take it. So afraid of side effects. IDC, stage 1, lymph nodes clear. Thoughts?

REPLY
1 reply
christylv | @christylv | Jul 13 10:33am

When do side effects from Tamoxifen kick in? I just started mine a few days ago. The strange thing is, I use to have a lot of breast soreness and now the past few days my breast feel normal again. Weird! Can anyone relate or have had a similar experience? Thanks!

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sue417 | @sue417 | Jul 14 2:14pm
In reply to @lovethedesert "they ordered 20mg is there lower? I still haven't taken it, just so timid about starting...." + (show)
@lovethedesert

they ordered 20mg is there lower? I still haven't taken it, just so timid about starting. Would lower mg help?

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Hi
I have er pr positive stage 0. Clear nodes. I tried it for 6 days the side effects were immediate, fatigue, naseau, tge worst headache I have ever had. After speaking with both of my oncogists not doing it or AI-s . I already have osteopenia with a compression fracture. AI's have too many risks

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raebaby | @raebaby | Jul 14 3:37pm

I'm a Libra too. I'm 82. At 79 I had an estrogen positive tumor and a lumpectomy. Plus radiation for 6 weeks and chemo for a year. I didn't take Tamoxifen because I was so emotionally miserable during menopause. (I found myself sobbing at the time because my daughter didn't clean her room)and I learned after a recent blood test with my oncologist that he doesn't expect the cancer to come back.

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gegost1955 | @gegost1955 | Jul 15 3:25pm
In reply to @bjohnson511 "I’m going through issues with my pills as well! Took Anastrozole for 5 mos now have..." + (show)
@bjohnson511

I’m going through issues with my pills as well! Took Anastrozole for 5 mos now have trigger thumb and my 2 baby fingers don’t work. Joint pain. Very painful. Now he wants me to take Tamoxifen. I just can’t decide to take it. So afraid of side effects. IDC, stage 1, lymph nodes clear. Thoughts?

Jump to this post

I took Anastrozole for 1 1/2 year and could not walk or move my right side when I quit. Oncologist offered me Tamoxifen but I decided not to take it. Now after 8 weeks I feel a lot better. Still have some nerve pain in my legs and my right hand feels funny every so often. But all the other Sid effects are gone. No more cough, itchy eyes, I can sleep. So, … I will see what happens next, but the meds were too much and took all happiness.

REPLY
1 reply
sue417 | @sue417 | Jul 16 9:56pm
In reply to @gegost1955 "I took Anastrozole for 1 1/2 year and could not walk or move my right side..." + (show)
@gegost1955

I took Anastrozole for 1 1/2 year and could not walk or move my right side when I quit. Oncologist offered me Tamoxifen but I decided not to take it. Now after 8 weeks I feel a lot better. Still have some nerve pain in my legs and my right hand feels funny every so often. But all the other Sid effects are gone. No more cough, itchy eyes, I can sleep. So, … I will see what happens next, but the meds were too much and took all happiness.

Jump to this post

Hi
That's so horrible to hear. I am sorry i don't believe any medication that is suppose to prevent a recurrence but
destroys your quality of life and your body is a medication . In my mind it's big pharma making money period they play on fear to get you to take it. Just my opinion 🤷 I hope you feel better soon

REPLY
1 reply
catlover2020 | @catlover2020 | Jul 18 11:55am
In reply to @sue417 "Hi That's so horrible to hear. I am sorry i don't believe any medication that is..." + (show)
@sue417

Hi
That's so horrible to hear. I am sorry i don't believe any medication that is suppose to prevent a recurrence but
destroys your quality of life and your body is a medication . In my mind it's big pharma making money period they play on fear to get you to take it. Just my opinion 🤷 I hope you feel better soon

Jump to this post

I have 3 different arthritis and rethinking Tamoxifen. Breast removed and 2 lymph nodes tested from each side tested clear. 6 weeks out and feeling good. I'm 65 and not wanting any more pain. Degenerative disc in neck and many places in my back. Why should I mess with anything else?

REPLY
1 reply
sue417 | @sue417 | Jul 18 12:33pm
In reply to @catlover2020 "I have 3 different arthritis and rethinking Tamoxifen. Breast removed and 2 lymph nodes tested from..." + (show)
@catlover2020

I have 3 different arthritis and rethinking Tamoxifen. Breast removed and 2 lymph nodes tested from each side tested clear. 6 weeks out and feeling good. I'm 65 and not wanting any more pain. Degenerative disc in neck and many places in my back. Why should I mess with anything else?

Jump to this post

Hi
I get it. You have to do what you feel is right for you. It's all a learning curve. I wish you well.

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