Anyone in this clinical trial for low-dose Tamoxifen (LoTam)?

Posted by whitehairwisdom @whitehairwisdom, Jan 13 12:24pm

https://www.clinicaltrials.gov/study/NCT06671912

Is anyone part of this clinical trial which began in Feb 2025? Curious to know if you've had any side effects and what are they?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Profile picture for jardinera25 @jardinera25

@jmab These studies (looks like they are available all over the US, according to initial poster's link!) are using 5 mg, or as some of us call it "baby Tam", but the study calls it "Lo-Tam." It's a 5 year study I think comparing it to AI's.

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@jardinera25 Seems my oncologist is pretending not to have heard of this and has an automatic no can do prepared.

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Profile picture for carolsue1234 @carolsue1234

@jmab I can't believe they used to give everyone 40 mg years ago, then they reduced it to 20mg and now we have to be scrappy to get it low enough to tolerate it. I don't want it to come back but I want to feel good.

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@carolsue1234 oh, I didn't know that they used to prescribe 40 mgs! I can't even imagine! Yes, I agree that we often have to scream to be heard. I'm doing ok on 10 mgs...slightly more brain fog, maybe. At 72, it's hard to know of the Tam is causing issues or if it's just my age! Anyway, I'll continue with the 10 mgs because I agree with you, I don't want it to come back!

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Profile picture for carolsue1234 @carolsue1234

@jardinera25 Seems my oncologist is pretending not to have heard of this and has an automatic no can do prepared.

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@carolsue1234 I didn't give my oncologist a choice. After weighing everything (my diagnosis, risk factors, etc), I said there's no way I'm taking 20 mgs of Tamoxifen. He sighed. 😆 But he then conceded that the ongoing trials for low-dose Tam look promising & why would they be spending the time & money if they didn't think that there was a future for taking a lower dose? I've taken 10 mg of Tam since Jan. 1st.

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I am so glad we are speaking up and advocating for ourselves. The times are changing and we want safer better options and not one size fits all.

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I’ve learned yes be your own advocate no matter what😊

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Profile picture for carolsue1234 @carolsue1234

@jardinera25 Seems my oncologist is pretending not to have heard of this and has an automatic no can do prepared.

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@carolsue1234

You may need a new oncologist. I switched oncologists after my first one was very obviously more interested in using patients for pharmaceutical kickbacks. My surgeon recommended the second oncologist who was more experienced and less self-serving. Doctors are just people with the same failings as a random mechanic. Those who are incapable of keeping up with important research and developments shouldn’t be allowed to make decisions for those of us who rely on vital information regarding our lives.

There are many peer reviewed articles on studies showing drug dosages and the unnecessary excessive overuse of chemo rounds don’t improve outcomes. If oncologists are incapable of learning from legitimate research to improve treatment - especially if they are stuck in past decades - patients do not have to accept the doctor’s failure to stay current.

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Profile picture for maryliz22503 @maryliz22503

At my request my onco gave me the CYP2D6 test, which determines how well I would metabolize Tam. Should I need to take it she will dose accordingly. Meanwhile I get a Guardant Reveal test every three months to detect cancer cell presence. So far so good. FWIW: I strongly encourage second opinions + doing your own research. I brought the CYP2D6 test to my onco’s attention, then she researched it. Cancer is a business and medicine in this country is driven by big pharma. I realized that to achieve my desired outcomes I must be my own project manager, researching options, managing risks, and coordinating efforts among siloed medical fields (e.g. GI, onco, nutrition). Blessings and hearty encouragement to you all because YOU are your own best advocate.

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@maryliz22503 :
Thank you so much the information regarding CYP2D6, and Guardant Reveal test.

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Profile picture for carolsue1234 @carolsue1234

@whitehairwisdom I am also 68 and have been on Letrozole for 2 years and I was having bone pain, and terrible dry eye, and I went to the oncologist today and I just said 5 mg of Tam or nothing. She tried to talk me out of it but I insisted on it. I am with you after all these years of research on breast cancer this is all they can do for us? I was supposed to be on Letrozole for another 8 years! I would have no bones or eyes left!!

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@carolsue1234
I am also 68, and do not wish to take any AI's after my surgery/radiation (still praying I don't need any of it!).
Thank you for your forthrightness and explaining yourself so well to your oncologist! That strengthens me just reading it!

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Profile picture for carolsue1234 @carolsue1234

@jardinera25 Seems my oncologist is pretending not to have heard of this and has an automatic no can do prepared.

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@carolsue1234 My oncologist gave me a surprised look when I asked her about "Baby Tam, 5mg" that I'd heard about on the mayoclinic.org support group. She just said that's not approved, it won't work.....later she added they're doing a current trial in the US.
I'm needing to switch oncologists at the Cancer center.....I don't feel I can really discuss things with her that I'm finding out via IA & research articles.

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Profile picture for dxd2000 @dxd2000

@maryliz22503 :
Thank you so much the information regarding CYP2D6, and Guardant Reveal test.

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@dxd2000 Wow! I have never heard of this gene testing to see how one metablolizes a medicine! Why aren't our docs doing this as an early part of prescribing a cancer drug like Tamoxifen? Probably has to do with something like the FDA hasn't approved it. Every cancer drug I've tried ends up being too strong with debilitating side effects.
It also tells you about other meds you may be on like some Blood pressure meds, pain relievers, depression drugs, etc.
Thanks for sharing this.....I'm going to ask my Doc if I can get this easy genetic test.

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