Taking a Lower Dose of Tamoxifen?

Posted by vivi1 @vivi1, Oct 6, 2021

Given the risk of endometrial cancer from tamoxifen, which apparently increases with dosage, length of use, and the age of the patient, is anyone taking a lower dose in order to extend adherence and soften side effects?

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@raebaby

I had a lumpectomy. Yesterday I saw the radiologist for my 6 week check up after ending radiation. She convinced me to try the Raloxifene. I came home and took half of the dosage. I'm going to see how that goes.
I talked to a friend who has the same oncologist as me. She had breast cancer and a lumpectomy 5 years ago. She took Tamoxifen as prescribed. She said it made her feel awful. She took it for 3 years and then told our doctor that she couldn't stand it any longer and was quitting it. He said okay, and that it actually only helped around 2% more in having the cancer not come back. Your situation sounds awful and I hope stopping Anastrozole helps.

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PS. Do you live in California? I'm admiring your Sequoia choice of name. I live in Templeton, Ca with many old oak trees.

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@sequoia

Hi @raebaby ! After 2 years of taking Anastrozole, I’m having side effects that are affecting my life and enjoyment. It started w/ my groin & hip. I thought it was my shoes. Got new shoes. Didn’t get better. Went to physical therapy & that helped some. (Thinking stretching & movement). Then my back started acting up worse than normal. Muscle spasms since end of August & a month ago my feet are so sore I walk like I’m crippled. I was going to say an old lady, but I am only 68 & older ladies & men probably walk better than me. Getting in and out of car is difficult. After I’m up snd walking a bit, it gets better. I do walk 2+ miles a day. Some days I miss. Thank God I can walk, as it really helps me physically AND mentally. All this to say that I’m finally admitting that this Anastrozole is affecting me! 💡.
I had mastectomy 2 years ago. No rad & no chemo. It was very small, but 15 yrs ago I had DCIS in left breast and w/ that history , surgery was better choice. What surgery did you have. I ask as I’m thinking of stopping Anastrozole for my Quality of life in the here & now. Raebaby, thank you for your comment.

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Have you talked to your doctor about these side effects? I did have some of these, but medical is so disjointed here that there really wasn’t much help for it. Maybe you have taken it long enough to effect your risk, or maybe there is some alternative for you after a judicious healing treatment break.

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@raebaby

PS. Do you live in California? I'm admiring your Sequoia choice of name. I live in Templeton, Ca with many old oak trees.

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@raebaby I had taken Tamoxifen w/ my first lumpectomy several yrs ago. Took for 3 1/2 yrs and I wanted to quit due to affecting my hair. My oncologist was okay with this.
Two yrs on Anastrozole was fine & now have the side effects kicking in fill speed ahead. I see my oncologist in November, so I’ll discuss.
I used to live in the Sierras in CA. Live the Sierras snd Sequoias. Thus the name. Thank you & blessings.

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@auntieoakley

Have you talked to your doctor about these side effects? I did have some of these, but medical is so disjointed here that there really wasn’t much help for it. Maybe you have taken it long enough to effect your risk, or maybe there is some alternative for you after a judicious healing treatment break.

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@auntieoakley, I mentioned to my original oncologist and he ordered up a hip X-ray , which did not show anything other than a small bit of arthritis.
I don’t believe my risk is very high, as hen I spoke w/ dr about type number- he said they didn’t perform that test as it was not necessary as my cancer was so small or something like that. I am taking a break from med snd we will see. I’m going to take bites each day of how I feel - what’s better - what still hurts. Note if I take ibuprofen & I am taking day 2 - Curacim by Terry Naturally. I friend that had bladder cancer took this to help him with his chemo treatments.

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I think Anastrozole is giving me diarrhea. there's no easy way about anything, I guess. It is a big fear that my hair will thin. I'm so happy to have it back after chemo. I wonder if Rogaine would help us? I know it has to be used forever to keep working. Target has one of their own brand that seems cheaper. I found some gloss that my daughter had given me so I sprayed it on my nice new, gray hair two days in a row to help out the curls. This morning I discovered it is for my face and my hair has a suntan tint!

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@raebaby

I think Anastrozole is giving me diarrhea. there's no easy way about anything, I guess. It is a big fear that my hair will thin. I'm so happy to have it back after chemo. I wonder if Rogaine would help us? I know it has to be used forever to keep working. Target has one of their own brand that seems cheaper. I found some gloss that my daughter had given me so I sprayed it on my nice new, gray hair two days in a row to help out the curls. This morning I discovered it is for my face and my hair has a suntan tint!

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I started thinning some and found that nioxin shampoo or the generic version of it, made a big difference because the thinning was from medication buildup in/on my scalp. But I most certainly never had diarrhea, in fact I was constipated the whole time.
On the upside you won’t be totally grey until it washes out. Lol

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@sequoia

@auntieoakley, I mentioned to my original oncologist and he ordered up a hip X-ray , which did not show anything other than a small bit of arthritis.
I don’t believe my risk is very high, as hen I spoke w/ dr about type number- he said they didn’t perform that test as it was not necessary as my cancer was so small or something like that. I am taking a break from med snd we will see. I’m going to take bites each day of how I feel - what’s better - what still hurts. Note if I take ibuprofen & I am taking day 2 - Curacim by Terry Naturally. I friend that had bladder cancer took this to help him with his chemo treatments.

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This is @sequoia and all. I’m sorry for typos. The biggest one was I was speaking of Onco testing number. I wish there was a way to edit our posts. I read back of mine whe someone comments- and see the glaring mistakes (auto correct) on spelling. So sorry all. 🤷‍♀️

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@sequoia

This is @sequoia and all. I’m sorry for typos. The biggest one was I was speaking of Onco testing number. I wish there was a way to edit our posts. I read back of mine whe someone comments- and see the glaring mistakes (auto correct) on spelling. So sorry all. 🤷‍♀️

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No worries, it happens to all of us. 😂

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I saw my oncologist last week. He gave me my OncotypeDX test score, 8, and then, knowing I am going in with open eyes, agreed to my taking 10 mg tamoxifen. He was ambivalent about the dosage and recommends that I up the dosage to the standard 20 mg if I have no side effects. I think he was happy that I am taking something over nothing. Hormone blockers, whether a SERM or and AI, lower but do not eliminate risk. It seems a crap shoot based on percentages. For me, this is what I think is the best path given my individual considerations.

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@sequoia - I understand your misery. 29 years ago I had a mastectomy and chemo. My oncologist wanted me to take Tamoxifen after chemo.
Within a few months I had to stop. It caused problems with my bile flow- no gallbladder then- and had a lot of pain.
Anastrozole could cause problems like you have.
I wonder if you have had a bone density scan yet? We are also at an age when we are prone to get osteoporosis.

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