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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I just started Raloxifine 1/2 the dosage,(on my own like you did) 3 days ago. Once the doctor told me that it wouldn't do any good take tamoxifen every other day. I figure at my age I'd rather have fewer years alive, but have quality instead of feeling sick. The oncologist did agree that the anti -hormone drugs only add about 2 percent more chance of having the cancer not come back. I am stage 2, less than 2 cm tumor and I had it in three lymph nodes. I had a lumpectomy, chemo and 6 weeks of radiation. I am HER2 positive so i get Herceptin in what is left of my chemo. Strangely enough, what bothers me the most is if my hair thins again on the Raloxifene. I was so happy to get a nice head of hair back. I'm not really worried about my heart or blood clots. My feet stopped swelling and i no longer need support socks. My feet got numb due to the chemo. They are improving and my biggest goal in life is to drive again. Formerly I was an RN, so I like to think i know something about my treatment and understanding of it. But, who knows really....

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Raebaby, I have read that Raloxifine is a SERM good for the bones and less toxic to the endometrial and uterine linings than tamoxifen, although less effective with recurrences. I am with you about fewer years but more QOL. It would seem logical that lower dose is better than no dose. The recent low-dose tamoxifen trial [https://ascopubs.org/doi/full/10.1200/JCO.18.01779] showed that 5mg was as effective as the 20mg with no apparent side effects for certain conditions. I will bring up Raloxifine with my MO.

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I would agree with quality over quantity of life. I certainly have my share of loss from all of the cancer treatments. I do like to think my doctor cares enough to guide me to the best treatment plan he can. I did just read an article about similar drugs being given less often. So maybe the half dose or an intermittent dose would be better for some people. Do you feel you have less side effects with a lower dose?

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@raebaby

I just started Raloxifine 1/2 the dosage,(on my own like you did) 3 days ago. Once the doctor told me that it wouldn't do any good take tamoxifen every other day. I figure at my age I'd rather have fewer years alive, but have quality instead of feeling sick. The oncologist did agree that the anti -hormone drugs only add about 2 percent more chance of having the cancer not come back. I am stage 2, less than 2 cm tumor and I had it in three lymph nodes. I had a lumpectomy, chemo and 6 weeks of radiation. I am HER2 positive so i get Herceptin in what is left of my chemo. Strangely enough, what bothers me the most is if my hair thins again on the Raloxifene. I was so happy to get a nice head of hair back. I'm not really worried about my heart or blood clots. My feet stopped swelling and i no longer need support socks. My feet got numb due to the chemo. They are improving and my biggest goal in life is to drive again. Formerly I was an RN, so I like to think i know something about my treatment and understanding of it. But, who knows really....

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Hello Rae
Thanks for your comments. I have not taken chimo or radiation after lumpectomy. My cancer was 2.4 cm in right breath and DCIS in the left. Have You swollen legs due to the treatment? I have it before diagnosed with cancer, perhaps because of arrhythmia ( couldn't define) .My main concern be on my feet, driving, thinking clear
and have my arrhythmia under control. Go to try holistic integrated treatment with 1/2 of Tamoxifen for now and go with the flow.
Keep send us reliable comments.

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I did have swollen legs and also wore pressure hose. Now my legs are normal so I quit using diuretics and support socks. My only real complaint is the numbness in my toes. I want to drive again. I am getting better. What seems to have really helped is vitamins D3 and K2. My chemo nurse said that cancer patients are low in D3. Last time I had blood work it had improved a lot. I don't seem to have brain fog. For years I have taken phosphatidyl serine and it seems to keep me happy. I was horribly sick during chemo when getting Taxol. After the dose was adjusted and I was rehydrated, I haven't had much trouble since, just the monotony of so many sessions of chemo and radiation.
Why didn't you have chemo and radiation?. My lumpectomy at the corner of my right breast looked rather funny, but it seems to be filling in on it's own. I will continue to have chemo (Herceptin only) until the end of February.

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Just started Tamoxifen
Interesting to know after what period of time I might experience any side effects?

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@raebaby

I did have swollen legs and also wore pressure hose. Now my legs are normal so I quit using diuretics and support socks. My only real complaint is the numbness in my toes. I want to drive again. I am getting better. What seems to have really helped is vitamins D3 and K2. My chemo nurse said that cancer patients are low in D3. Last time I had blood work it had improved a lot. I don't seem to have brain fog. For years I have taken phosphatidyl serine and it seems to keep me happy. I was horribly sick during chemo when getting Taxol. After the dose was adjusted and I was rehydrated, I haven't had much trouble since, just the monotony of so many sessions of chemo and radiation.
Why didn't you have chemo and radiation?. My lumpectomy at the corner of my right breast looked rather funny, but it seems to be filling in on it's own. I will continue to have chemo (Herceptin only) until the end of February.

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I didn’t have chimo and radiation, because possible arrhythmia complication, specially when both breast should be treated after bilateral lumpectomy.
With ER/PR positive & her2 negative & no lymph affected , the hormonal therapy recommended by dr. for now.
Wander how fast the side effects after started taking Tamoxifen would occurred.
For swollen leg I tried diuretic, but it trigger AFIB, & high heart rate.
Hope you will be fine to finish the treatment and start driving .
Good luck 😉

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I discovered that even only after 1/2 the dose of Raloxifene HCl I urinate all day long. I looked it up and it is a side effect. I don't think I can put up with it. I am not taking any for the next few days to see if it changes. Thanks for the good wishes and I wish you good luck too. Keep in touch!

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@raebaby

I discovered that even only after 1/2 the dose of Raloxifene HCl I urinate all day long. I looked it up and it is a side effect. I don't think I can put up with it. I am not taking any for the next few days to see if it changes. Thanks for the good wishes and I wish you good luck too. Keep in touch!

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Hi Rae
I don’t take Raloxifene
My prescribed Tamoxifen dose 20 mg I started with 10 mg Too much scaring info of side effects.Will ask doctors about the dose.
I believe we need, except virtual support group, face to face meetings, including with the doctors.
It is depressing that we are treating by protocol, b y file or case number .
Moreover by age !!
Best to you

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Yes, I know you take tamoxifen. I compare mine to yours because they are both anti-hormone. I have some taxmoxifen. I took it during my chemo and I think it made my legs swell. I've had good doctors and attention to my care. I am satisfied in that respect. i just am afraid of this anti hormone drug and don't want to take it unless it shows great improvements against the cancer returning, and I don't think it does. My husband belonged to an in person Parkinson's support group. They were great people, but I, the caregiver, actually got more from the online group we joined.

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