Anyone partaking in this clinical trial for low dose Tam?

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.

I am not part of the trial, but I do take the Baby Tam dose of 5 mg/day.

I was started on 20 mg, and had severe leg & foot cramps at night, so not sleeping, and hot flashes were a lot like menopause (I am post menopausal). Oncologist had me take a 4 week holiday, then went to 5 mg.

I still had some minor muscle cramps & hot flashes, oncologist suggested magnesium for the cramps which definitely helped.

I’ve been on 5 mg for almost 2 years, and I still occasionally get some muscle cramps, and most evenings there is a hot flash, honestly not sure, maybe that’s normal post menopause?

REPLY

Thank you for posting @1ek I know there are others on this dosage, maybe not in a trial. I am really happy that you are tolerating this dosage well.
Are you at a normal menopause age, or is this induced menopause from the endocrine therapy?

REPLY

I started the discussion because my onco doc suggested that I would be a good candidate for the low Tam trial due to my type of BC cancer and I wanted to know how someone on this drug at the lower dose was tolerating it however, after signing up for the trial, I was not chosen for the group to take 5mg of Tamoxifen but chosen for the other group which is a normal dose of an AI. After reading through a lot of the comments here on this forum, I opted not to participate and dropped out of the trial. I was willing to try the 5mg of Tam but not a higher dose of another drug. I even asked my doc do I have to participate in the clinical trial to get 5mg of Tam and the answer was "YES", which I found concerning. What drove home my decision not to take any drugs at this time were 2 comments the doc said to me and those were "well, you also have to consider your quality of life in making a decision" and "the drugs are to reduce distant recurrence". "Distant" recurrence I wondered? I'm 68 years old. So if taking an AI is only reducing recurrence later in my life and at a very small percentage, I'd rather enjoy the time I have left and not have to constantly battle with side effects of the drug, even if they are mild. What is most frustrating to me about BC treatment is after all these years and tons of money thrown at research, this is the best you got for us??? I am on the prowl now to seek out a 2nd opinion for my treatment, if any, however, I am not holding my breath that much will change. I will continue to maintain a healthy diet, stay active and get plenty of sleep in hopes that my cancer doesn't return. That's the best choice I think I have made for myself right now going forward.

REPLY

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.

REPLY
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.

Jump to this post

@maryliz22503 Thank you for your comment! My onco doc never mentioned these tests and I voiced many concerns with her about the dosing of the AI's!

REPLY
Profile picture for Chris, Volunteer Mentor @auntieoakley

Thank you for posting @1ek I know there are others on this dosage, maybe not in a trial. I am really happy that you are tolerating this dosage well.
Are you at a normal menopause age, or is this induced menopause from the endocrine therapy?

Jump to this post

@auntieoakley I am 64, so normal menopause age

REPLY
Profile picture for whitehairwisdom @whitehairwisdom

I started the discussion because my onco doc suggested that I would be a good candidate for the low Tam trial due to my type of BC cancer and I wanted to know how someone on this drug at the lower dose was tolerating it however, after signing up for the trial, I was not chosen for the group to take 5mg of Tamoxifen but chosen for the other group which is a normal dose of an AI. After reading through a lot of the comments here on this forum, I opted not to participate and dropped out of the trial. I was willing to try the 5mg of Tam but not a higher dose of another drug. I even asked my doc do I have to participate in the clinical trial to get 5mg of Tam and the answer was "YES", which I found concerning. What drove home my decision not to take any drugs at this time were 2 comments the doc said to me and those were "well, you also have to consider your quality of life in making a decision" and "the drugs are to reduce distant recurrence". "Distant" recurrence I wondered? I'm 68 years old. So if taking an AI is only reducing recurrence later in my life and at a very small percentage, I'd rather enjoy the time I have left and not have to constantly battle with side effects of the drug, even if they are mild. What is most frustrating to me about BC treatment is after all these years and tons of money thrown at research, this is the best you got for us??? I am on the prowl now to seek out a 2nd opinion for my treatment, if any, however, I am not holding my breath that much will change. I will continue to maintain a healthy diet, stay active and get plenty of sleep in hopes that my cancer doesn't return. That's the best choice I think I have made for myself right now going forward.

Jump to this post

@whitehairwisdom I'm 72, stage 1 & had to twist his arm, figuratively speaking, but my oncologist prescribed a half-dose (10 mg) of Tamoxifen for me which will hopefully also protect my bones. It's only been a couple of weeks but no real side effects. I'm hoping I tolerate the 10 mg, otherwise I'll drop down to 5! We have to advocate for ourselves, I agree! Best wishes to you!

REPLY
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.

Jump to this post

@maryliz22503 yes, it's big business. I'm 72, stage 1 & had 5-day radiation plus also taking a half-dose (10 mg) of Tamoxifen. My radiologist told me that most of the trials for evaluating the 5-day radiation therapy were done in England because the US medical establishment objectd to the fact that it would be less profitable. Even though it's wonderfully convenient & has fewer side effects! That speaks volumes, doesn't it?!

REPLY
Profile picture for whitehairwisdom @whitehairwisdom

I started the discussion because my onco doc suggested that I would be a good candidate for the low Tam trial due to my type of BC cancer and I wanted to know how someone on this drug at the lower dose was tolerating it however, after signing up for the trial, I was not chosen for the group to take 5mg of Tamoxifen but chosen for the other group which is a normal dose of an AI. After reading through a lot of the comments here on this forum, I opted not to participate and dropped out of the trial. I was willing to try the 5mg of Tam but not a higher dose of another drug. I even asked my doc do I have to participate in the clinical trial to get 5mg of Tam and the answer was "YES", which I found concerning. What drove home my decision not to take any drugs at this time were 2 comments the doc said to me and those were "well, you also have to consider your quality of life in making a decision" and "the drugs are to reduce distant recurrence". "Distant" recurrence I wondered? I'm 68 years old. So if taking an AI is only reducing recurrence later in my life and at a very small percentage, I'd rather enjoy the time I have left and not have to constantly battle with side effects of the drug, even if they are mild. What is most frustrating to me about BC treatment is after all these years and tons of money thrown at research, this is the best you got for us??? I am on the prowl now to seek out a 2nd opinion for my treatment, if any, however, I am not holding my breath that much will change. I will continue to maintain a healthy diet, stay active and get plenty of sleep in hopes that my cancer doesn't return. That's the best choice I think I have made for myself right now going forward.

Jump to this post

@whitehairwisdom Always good to get another opinion when you’re not comfortable with something.

My experience when I moved my care to a cancer research center, the oncologist & radiologist were specialized in breast cancer nd much more open to discussion and they were more comfortable going with a treatment plan that was outside of “guideline directed therapy”. When I was at a smaller hospital, they only offered what the guidelines said.

REPLY
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.

Jump to this post

@maryliz22503
Thanks for sharing this information! It has been my understanding that CYP2D6 determines if Tamoxifen is the most effective drug for an individual versus the actual dosing.

REPLY
Please sign in or register to post a reply.