ADH and tamoxifen for post menopausal woman

Anxiouscanada59

I was on 20 mg tamoxifen...it drove me nuts with the hot flashes and lack of sleep... I am now on half that dose, 10 mg, but still suffer from hot flashes to the point that I have to take sleeping pills to help me sleep through the night, with 2-3 wakings only (ha ha). I have noticed joint pain as well. I know there was a study done and presented in Austin in 2018 saying 5 mg is also ok. Have there been any other studies done on ADH and tamoxifen or something else for ADH. I have had my genetic testing done....no BRCA 1 or 2 or other. Any thoughts, advice. Im 61.

flashlight

Hi Anxiouscanada59, Did you have surgery? I have read about DCIS treated with 5mg of tamoxifen. The problem is those studies were not continued. I took gabapentin 100mg for the night sweats and nerve pain for almost a year. My MO didn't think it was necessary, but my primary doctor did. I split my dose 10mg in am and 10mg in pm. I found the 10mg tablet worked better for me. There is a lot of information on this site if you do a search. Good luck.

Moderators

Anxiouscanada59, welcome to Breastcancer.org! We're so glad you've joined us and hope you find it to be a place of support and encouragement.

As Flashlight says, there is a lot of information in our main site that you may find helpful. We'd like to suggest these two articles to start:

Low-Dose Tamoxifen May Be an Option to Reduce Risk of Recurrence, Invasive Disease After Non-Invasive Breast Cancer

11 Ways to Manage Breast Cancer Treatment-Related Hot Flashes

Edited to add: May we suggest that you fill out your diagnosis and treatment information on your profile and make it public, so that other members can easily know your situation. See here: How do I get my diagnostic and/or treatment information to show in my posts?

Please keep us all posted as to how things go for you. And if you have any questions for us please do get in touch.

Warm wishes,Mods

Beesie

At age 61 I am assuming you are post menopause. In that case, you could also try an Aromatase Inhibitor. I don't know if AIs are officially approved for prevention for those who have high risk conditions such as ADH (they weren't last time I checked but that was a while ago), but these days AIs are regularly prescribed for that purpose. They come with a different set of side effects, which for some patients are easier than those they experience on Tamoxifen but for other patients are more difficult. So until someone tries it, they won't know.

If you have not already done so, you might want to scroll through the High Risk for Breast Cancer forum; there are lots of threads about strategies to deal with ADH, including some recently that have discussed lower dosages of Tamoxifen. And here is the most extensive thread about ADH; it's been a few months since anyone has posted but it has a lot of good information and probably should be revived for those newly dealing with ADH: Topic: ADH Club

Edited to add: Prevention of breast cancer for those who have a high risk condition and prevention of recurrence after a breast cancer diagnosis are two different things - there is different biology at work. Sometimes the study results for drugs are similar, but sometimes they are not, so you need to be careful in reviewing studies that are not specific to your situation.

Anxiouscanada59

thanks for your reply flashlight.... I am so new to this realm of having access to other people who are in the same boat... so reassuring and comforting, but technically challenging ha ha. yes, I had an excision surgery for the ADH where they removed 5cm...to prevent breast cancer from developing (improves chances by 30 %) they recommended tamoxifen - but its hard, even with 10 mg...so I am considering 5mg...but only one study apparently has been done on its success for ADH persons... I have a family history of breast/ovarian cancer but luckily I am not a carrier of the genes that my mother and sister had and died of eventually.

Anxiouscanada59

thank you Beesie, I will look into the other forum for high risk for BC, as well as A I.