1. < Breast Cancer

Taking Tamoxifen long term, between 5-10 years after breast cancer.

Posted by veden66 @veden66, May 8, 2023

Hi. I'm coming up on my 5th year anniversary of being cancer free and taking Tamoxifen. I had invasive ductal carcinoma. Lumpectomy followed by radiation. I had two lymph nodes with isolated tumor cells but tested negative for cancer. I've had zero side affects from taking the medication. I've found a few studies that show there is a long term benefit past the 10 year mark for staying on tamoxifen. I'm interested if people are staying on tamoxifen past the 5 year mark.

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vsunshine18 | @vsunshine18 | May 19, 2023

Originally started on Letrozole. Horrible side effects with arthritic type symptoms. Switched to its sister and still the same issue. Last result was tamifen. Still on low dose currently an no real significant side effects. Better than nothing.

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Mentor
Chris, Volunteer Mentor | @auntieoakley | May 19, 2023
In reply to @clo1977 "I had to decrease from 20mg to 10mg Tamoxifen. I have triple positive DCIS with microinvasion...." + (show)
@clo1977

I had to decrease from 20mg to 10mg Tamoxifen. I have triple positive DCIS with microinvasion. I had a mastectomy no lymph node involvement. But the side effect for me have been dizziness, anxiety, brain fog, and heavy menstrual flow. I took myself off completely for 3 weeks and felt normal. Oncologist says I need to get back to the 20mg. I feel like this is not quality of life. I am having a tough time being on this medicine. It seems like everyone here tolerated it well.

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If these issues continue, I would advocate to try a different medication.
“If your quality of life is one you cannot abide, then why would you continue to fight this”.
That is the argument I would use, we each have to make our own decision based on our own reactions, but I have definitely fought for medication changes when things were truly awful.
Are you comfortable giving this a try, and if it continues asking to try something different?

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colely | @colely | May 20, 2023
In reply to @clo1977 "I had to decrease from 20mg to 10mg Tamoxifen. I have triple positive DCIS with microinvasion...." + (show)
@clo1977

I had to decrease from 20mg to 10mg Tamoxifen. I have triple positive DCIS with microinvasion. I had a mastectomy no lymph node involvement. But the side effect for me have been dizziness, anxiety, brain fog, and heavy menstrual flow. I took myself off completely for 3 weeks and felt normal. Oncologist says I need to get back to the 20mg. I feel like this is not quality of life. I am having a tough time being on this medicine. It seems like everyone here tolerated it well.

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Hello. I had most of the symptoms you had on Tamoxifen. I went down to 10 MG. but now I have gallstones, so I can't continue. I have osteoporosis, so only Tamoxifen is bone protective. There are clinical trials for 2 natural substances. One is Turkey Tail Mushrooms. 3 grams a day, ( at least). The other is Indole-3-Carbinol. I take 200mg, but may double it. J have no side effects, and I know they are being looked into by legitimate researchers. Turkey Tail has been used, by doctors in Japan, for decades. It is for you to read about these supplements, and make your own decisions, of course, but these seem to be the natural way to help keep breast cancer from returning.

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1 reply
kimmycorvette1 | @kimmycorvette1 | May 21, 2023

I didnt take it. I refused pills, chemo, radiation and glad I did. I just had surgery. My tumor was very big- 94 mm.

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1 reply
coldia | @coldia | May 21, 2023
In reply to @colely "Hello. I had most of the symptoms you had on Tamoxifen. I went down to 10..." + (show)
@colely

Hello. I had most of the symptoms you had on Tamoxifen. I went down to 10 MG. but now I have gallstones, so I can't continue. I have osteoporosis, so only Tamoxifen is bone protective. There are clinical trials for 2 natural substances. One is Turkey Tail Mushrooms. 3 grams a day, ( at least). The other is Indole-3-Carbinol. I take 200mg, but may double it. J have no side effects, and I know they are being looked into by legitimate researchers. Turkey Tail has been used, by doctors in Japan, for decades. It is for you to read about these supplements, and make your own decisions, of course, but these seem to be the natural way to help keep breast cancer from returning.

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Hello, your post was so very helpful. I took Tamoxifen for 3 years 20 years ago but stopped after I started having joint pain. I recently had another lumpectomy and the Dr. wants me to start on AI’s (which I’ve decided not to since I have osteoporosis) or Tamoxifen. I thought about going back on that for awhile to see how I do. I was also looking for natural ways to help prevent my breast cancer from returning. I feel like I am “rolling the dice”when it comes to all the side effects these drugs can cause. Do you have a website that you go to for information on what brands of Turkey Tail and Indole-3-Carbinol that are reputable. There are so many choices out there in the “vitamin world” and it can be so confusing.

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1 reply
colely | @colely | May 21, 2023
In reply to @coldia "Hello, your post was so very helpful. I took Tamoxifen for 3 years 20 years ago..." + (show)
@coldia

Hello, your post was so very helpful. I took Tamoxifen for 3 years 20 years ago but stopped after I started having joint pain. I recently had another lumpectomy and the Dr. wants me to start on AI’s (which I’ve decided not to since I have osteoporosis) or Tamoxifen. I thought about going back on that for awhile to see how I do. I was also looking for natural ways to help prevent my breast cancer from returning. I feel like I am “rolling the dice”when it comes to all the side effects these drugs can cause. Do you have a website that you go to for information on what brands of Turkey Tail and Indole-3-Carbinol that are reputable. There are so many choices out there in the “vitamin world” and it can be so confusing.

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I use OM Turkey Tail. And Indole-3-Carbinol, NOW brand. You never want any supplements made in China. Dr. Sherry Rogers has tested supplements from her online store, called N.E.E.D.S. She is an Environmental Health doctor. Both she, and the doctors at The Environmental Health Center, in Dallas Texas, test for estrogen- mimicking chemicals. They are the ones causing the rising rates of breast cancer. I was exposed to high levels of Chlordane as an adolescent, and tested for abnormally high levels at age 42. I am saving up my money to be retested. There is a sauna protocol, to detox, at Dallas but I never tried it.

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2 replies
coldia | @coldia | May 21, 2023
In reply to @colely "I use OM Turkey Tail. And Indole-3-Carbinol, NOW brand. You never want any supplements made in..." + (show)
@colely

I use OM Turkey Tail. And Indole-3-Carbinol, NOW brand. You never want any supplements made in China. Dr. Sherry Rogers has tested supplements from her online store, called N.E.E.D.S. She is an Environmental Health doctor. Both she, and the doctors at The Environmental Health Center, in Dallas Texas, test for estrogen- mimicking chemicals. They are the ones causing the rising rates of breast cancer. I was exposed to high levels of Chlordane as an adolescent, and tested for abnormally high levels at age 42. I am saving up my money to be retested. There is a sauna protocol, to detox, at Dallas but I never tried it.

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Thank you so much for the helpful information😊

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veden66 | @veden66 | May 21, 2023
In reply to @jdriver "I have been on Tamoxifen for almost 10 years now. Never had any side effects. Guess..." + (show)
@jdriver

I have been on Tamoxifen for almost 10 years now. Never had any side effects. Guess I am one of the lucky ones. Everyone reacts differently but I would probably say if you can tolerate it, take it ! Also my bone scan says I have no osteoporosis and I will be 72 this year. It was my understanding that the Tamoxifen helps bone density.

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That's great. I hope my doctor will keep me on Tamoxifen for another 5 years. Thank you!

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faith2023 | @faith2023 | May 21, 2023
In reply to @colely "I use OM Turkey Tail. And Indole-3-Carbinol, NOW brand. You never want any supplements made in..." + (show)
@colely

I use OM Turkey Tail. And Indole-3-Carbinol, NOW brand. You never want any supplements made in China. Dr. Sherry Rogers has tested supplements from her online store, called N.E.E.D.S. She is an Environmental Health doctor. Both she, and the doctors at The Environmental Health Center, in Dallas Texas, test for estrogen- mimicking chemicals. They are the ones causing the rising rates of breast cancer. I was exposed to high levels of Chlordane as an adolescent, and tested for abnormally high levels at age 42. I am saving up my money to be retested. There is a sauna protocol, to detox, at Dallas but I never tried it.

Jump to this post

Oh my God! Thanks so much for sharing this excellent information. I definitely will be looking into this.
Sincerely,
Faith2023/21 May 2023

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joiful | @joiful | May 22, 2023

My current big concern is bone thinning as a result of taking Letrozole. My latest bone density test showed some thinning in my pelvic bone. My oncologist strongly recommends Prolia shots every six months.

What I’ve learned about the side effects of Prolia from research and talking to other women scares me - big time! For instance, the dental work I’m in the middle of couldn’t have been done had I been on Prolia.

Does anyone else have similar issues and concerns? What other options do I have?

My next appointment with my oncologist is 9/8. He’s planning on starting the shots then. I’ve messaged him my concerns and suggestion to have another bone density test in February. Based on that result, then Prolia.

Meanwhile, I will continue my strength training, yoga, and daily long walks up and down these mountains.

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