Tamoxifen side effects in postmenopausal women

Posted by joyceelaine @joyceelaine, Nov 9 5:33am

I took letrozole for 5 years for E+ BC. Developed osteoporosis. It is 7 years later and I have a second BC. Dr wants me to take tamoxifen this time but the side effects terrify me. Any comments on side effects, especially losing teeth. Also, has anyone taken letrozole for more than 5 years and how did that go?

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Hi
I am post menopausal.
Diagnosed with DCIS ER/PR + HER2 - STAGE 0
Lumpectomy and sentinel node surgery. Doctor wanted me to try tamoxifen.I lasted two weeks. The side effects for me were horrible and life is too short. I discussed with my Dr's and they were OK with me not taking it.

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My experience- postmenopausal, 2 years on tamoxifen, ER/PR+ DCIS, taking 5 mg now. Tamoxifen has some problems but it can do some good things, too. It should not cause problems with your teeth. In fact, it supports bone health for postmenopausal women. If I’ve read the research right, it also is protective of the myelin sheath, the covering over our nerves. In postmenopausal women it can (but not always) act as an estrogen agonist in the body but not in the breasts. That means it provides estrogenic effects. It’s why it helps the bones. For me, that extra estrogen effect has completely reversed the terrible vaginal atrophy I had after menopause. I suspect it must be helping my hair and nails. My nails had gotten soft during menopause but are now strong.

Anytime estrogen is restricted our fat distribution begins to change. I believe it is with testosterone dominance we put on fat in a more male pattern, around our abdomen, beer gut style. That happens with AIs, too. I have not put on overall weight, but I do have a different type padding of fat from below my ribs to pubic bone area.

The concern for uterine cancer and deep vein thrombosis is real, but the added risk is low. Women need to consider their current risk level. No BRCA, no prior PCOS or thrombosis puts risk a bit lower.

On 5mg tamoxifen I have very mild side effects. No hot flashes, but if my body overheats like in a hot car or after exercise, it takes longer to cool off. My vaginal health is good. I no longer have eczema outbreaks as I did after menopause. My skin, hair and nails look pretty good. It’s difficult to tell if I’m having any drug related memory issues. I’m 70, so some forgetfulness is expected.
On 20 mg, I had headaches and noticeable brain fog. I had a brain MRI when all other causes of headaches were eliminated. The result was that it was most likely the tamoxifen causing the headaches. For me, the side effects started by 2 weeks and at 3 months there was another notable change, then it leveled off. I stayed on 20 mg for 6 months before I tried halving that amount to 10. Then doctor directed one month off. Then 5 mg. There is not as much research showing 5 works as well as 20, but some studies say it does. As more data is collected we’ll know more. Keeping my fingers crossed.

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I suggest you try it and see.
I could not take letrozole or exemestane. I have mild hot flashes on Tamoxifen. I take 20 mg a day.I am 77 and still able to tolerate it.
Everyone is different . I have been on it 9 months..
Good luck

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@triciaot

My experience- postmenopausal, 2 years on tamoxifen, ER/PR+ DCIS, taking 5 mg now. Tamoxifen has some problems but it can do some good things, too. It should not cause problems with your teeth. In fact, it supports bone health for postmenopausal women. If I’ve read the research right, it also is protective of the myelin sheath, the covering over our nerves. In postmenopausal women it can (but not always) act as an estrogen agonist in the body but not in the breasts. That means it provides estrogenic effects. It’s why it helps the bones. For me, that extra estrogen effect has completely reversed the terrible vaginal atrophy I had after menopause. I suspect it must be helping my hair and nails. My nails had gotten soft during menopause but are now strong.

Anytime estrogen is restricted our fat distribution begins to change. I believe it is with testosterone dominance we put on fat in a more male pattern, around our abdomen, beer gut style. That happens with AIs, too. I have not put on overall weight, but I do have a different type padding of fat from below my ribs to pubic bone area.

The concern for uterine cancer and deep vein thrombosis is real, but the added risk is low. Women need to consider their current risk level. No BRCA, no prior PCOS or thrombosis puts risk a bit lower.

On 5mg tamoxifen I have very mild side effects. No hot flashes, but if my body overheats like in a hot car or after exercise, it takes longer to cool off. My vaginal health is good. I no longer have eczema outbreaks as I did after menopause. My skin, hair and nails look pretty good. It’s difficult to tell if I’m having any drug related memory issues. I’m 70, so some forgetfulness is expected.
On 20 mg, I had headaches and noticeable brain fog. I had a brain MRI when all other causes of headaches were eliminated. The result was that it was most likely the tamoxifen causing the headaches. For me, the side effects started by 2 weeks and at 3 months there was another notable change, then it leveled off. I stayed on 20 mg for 6 months before I tried halving that amount to 10. Then doctor directed one month off. Then 5 mg. There is not as much research showing 5 works as well as 20, but some studies say it does. As more data is collected we’ll know more. Keeping my fingers crossed.

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I can only take 5 mg. of Tamoxifen. I supplement with Turkey Tail mushroom powder. I have read that 2 to 4 grams is good. Two grams is usually equivalent to 1 teaspoon of the powder. You can read information on Mayo clinic, pubmed. Also, http://www.huffpost.com/entry/mushrooms-cancer

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@sue417

Hi
I am post menopausal.
Diagnosed with DCIS ER/PR + HER2 - STAGE 0
Lumpectomy and sentinel node surgery. Doctor wanted me to try tamoxifen.I lasted two weeks. The side effects for me were horrible and life is too short. I discussed with my Dr's and they were OK with me not taking it.

Jump to this post

There is a study that shows a 2nd cancer comes after tamoxifen. I wasn't willing to take tamoxifen.
Google for yourself

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Everyone is different of course but I stopped taking Tamoxifen after about 9 months. I was on 5 mg a day after I was diagnosed with ADH and a lumpectomy. One of my ovaries became enlarged and I developed a polyp on my uterus that was hyperplasia. While there was no way to know for sure if Tamoxifen caused this, I wasn't comfortable continuing to take it. After an unrelated surgery this week, I'm going to try Raloxifene. It's not considered to be quite as effective as Tamoxifen but that's where I am.

Sending you a hug! Best of luck!

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I'm almost 3 years out of my HER2 positive breast cancer treatment. I had a lumpectomy ,chemo and radiation. I did not want to take Tamoxifen and my doctors said that was okay. Blood tests have shown I'm doing fine at 83.

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