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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@jane2024

Hi I started Tamoxifen on May 10th this year. It has worked ok so far. I noticed some light bleeding today. Is that normal? I had thought there would be no more period when you are on Tamoxifen. Thanks for any insight.

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I'm about to start Tamoxifen 20 mg. Bleeding? Menopause 20 years ago. Is bleeding going to come back?

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@jane2024

Hi I started Tamoxifen on May 10th this year. It has worked ok so far. I noticed some light bleeding today. Is that normal? I had thought there would be no more period when you are on Tamoxifen. Thanks for any insight.

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@jane2024
I was told some people may continue to have a period while taking it and others may not.
I started Tamoxifen and after having irregular bleeding (twice a month) and also pelvic pain, my Gynecologist did a pelvic ultrasound and I had a uterine fibroid, a large cyst on my left ovary and my uterine lining was a bit thickened.
I am now 3 weeks out after having a total hysterectomy.
If you feel the bleeding is something new, definitely wouldn’t hurt to ask your Gynecologist.

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@mchler73

@jane2024
I was told some people may continue to have a period while taking it and others may not.
I started Tamoxifen and after having irregular bleeding (twice a month) and also pelvic pain, my Gynecologist did a pelvic ultrasound and I had a uterine fibroid, a large cyst on my left ovary and my uterine lining was a bit thickened.
I am now 3 weeks out after having a total hysterectomy.
If you feel the bleeding is something new, definitely wouldn’t hurt to ask your Gynecologist.

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Thanks. I will do so.

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@jane2024

Hi I started Tamoxifen on May 10th this year. It has worked ok so far. I noticed some light bleeding today. Is that normal? I had thought there would be no more period when you are on Tamoxifen. Thanks for any insight.

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Hello, I had breast cancer surgery in January 2000 at the age of 42. It was estrone receptive. Stage 2. Lymph node negative. Had chemo and radiation. I was on tamoxifen for 5 years. They tested me for estrogen before hand and I didn't have any. I was very leery about Tamoxifen because of the side effects. I finally went on it and I started bleeding after about two months. When I went back to the Oncologist they tested me again because they were gonna put me on another newer drug for woman that were still producing estrogen. As the chemo shut down my ovaries I was not. I went back on the tamoxifen. The bleeding did stop. I didn't have any other problems with it. Other than extreme hot flashes!! That has been 24 years ago now! Hope you do well.

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Thanks very much for sharing. This is very helpful. Have a great day.

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@mchler73

@jane2024
I was told some people may continue to have a period while taking it and others may not.
I started Tamoxifen and after having irregular bleeding (twice a month) and also pelvic pain, my Gynecologist did a pelvic ultrasound and I had a uterine fibroid, a large cyst on my left ovary and my uterine lining was a bit thickened.
I am now 3 weeks out after having a total hysterectomy.
If you feel the bleeding is something new, definitely wouldn’t hurt to ask your Gynecologist.

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I had a very similar experience to yours with cyst, thickened uterus, and hysterectomy after taking Tamoxifen half dose for about six months. I also gained a fatty liver among other issues. Did your gynecologist recommend resuming Tamoxifen? After this experience, I'm hesitant to restart it. I hope your recovery is going well!

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@dkcbc24

I had a very similar experience to yours with cyst, thickened uterus, and hysterectomy after taking Tamoxifen half dose for about six months. I also gained a fatty liver among other issues. Did your gynecologist recommend resuming Tamoxifen? After this experience, I'm hesitant to restart it. I hope your recovery is going well!

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My Oncologist had me go off of it for a week before and a week after the hysterectomy surgery and now he wants me to continue taking it until my next appointment and check my bloodwork. It sounded like once those results were back and if I am in “surgery induced menopause”, he wants to switch me to Letrozole. So I’m just kind of waiting for that appointment. I’m not sure which is worse, Tamoxifen or Letrozole. Tamoxifen side effects have been rough, especially emotionally.
Did your doc say anything about switching meds after your hysterectomy?
Thank you! I am finally starting to feel like I’m on the mend from the hysterectomy.

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@mchler73

My Oncologist had me go off of it for a week before and a week after the hysterectomy surgery and now he wants me to continue taking it until my next appointment and check my bloodwork. It sounded like once those results were back and if I am in “surgery induced menopause”, he wants to switch me to Letrozole. So I’m just kind of waiting for that appointment. I’m not sure which is worse, Tamoxifen or Letrozole. Tamoxifen side effects have been rough, especially emotionally.
Did your doc say anything about switching meds after your hysterectomy?
Thank you! I am finally starting to feel like I’m on the mend from the hysterectomy.

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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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@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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@brightside21
My oncologist said the Letrozole should not cause the moodiness or emotional roller coaster, but I have read some people say that it does. I already have brain fog from the Tamoxifen but it sounds like it was much worse for you on Letrozole. Was that the main side effect for you?

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@mchler73

My Oncologist had me go off of it for a week before and a week after the hysterectomy surgery and now he wants me to continue taking it until my next appointment and check my bloodwork. It sounded like once those results were back and if I am in “surgery induced menopause”, he wants to switch me to Letrozole. So I’m just kind of waiting for that appointment. I’m not sure which is worse, Tamoxifen or Letrozole. Tamoxifen side effects have been rough, especially emotionally.
Did your doc say anything about switching meds after your hysterectomy?
Thank you! I am finally starting to feel like I’m on the mend from the hysterectomy.

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I've received a couple of second opinions and both docs have said, it's really up to me. One suggested trying Raloxifene instead. I've not heard/read much about Letrozole but I will do some research there. I'm going to Texas next week for a consultation. I had totally unrelated type of cancer 24 years ago and the radiation side effects have shown up in the last few years. I am dealing with those and of course, happy to be here. But I'm not sure I'm up for more issues like I experienced with Tamoxifen. I am going to ask about a mastectomy. I know it's not ideal but I'm super sensitive to drugs and have family history of strokes/aneurysms so the meds worry me since blood clots are a side effect of Tamoxifen.
I'm so glad you are feeling better! Would love to hear what you end up doing.

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