Alternative to Tamoxifen other than AI

Posted by luckbme @luckbme, Jun 25 11:45pm

I had lumpectomy and radiation for invasive ductal carcinoma stage 2. Went through both very easily. Then I was told to start Tamoxifen. Nothing easy there. I'm miserable so taking a break after two and a half months. I should not take AI because of osteoporosis. And I've read that Tamoxifen results are all the way from 40% to 80% effective to keep cancer from recurring. Which is it? And surely there are other similar drugs to Tamoxifen? Anyone?

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Hormone therapy keeps cancer down by 50%. If your chance of recurrence is 70% then tamoxifen will reduce your recurrence to 35%. If your chance of recurrence is 2% then it reduces it to 1%. However, I have heard that 1/4 cup of ground flax seed daily is more efficacious than tamoxifen! It should be organic and ground with a coffee grinder prior to eating. I have been testing my CA 15-3 after 2 months of flax and an AI and mine reduced fr 32 to 20.

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I really appreciate this information. Thank you! Can you point me to the source of this percentage info so I can show my husband?

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I just read that there was a study that showed that fasting more than 13 hours reduced the risk of recurrence. What I don't know is whether the people in the study took the AI and fasted or not. I have more questions but thought that was interesting. Personally, I am not sure how much longer I can tolerate the side effects of the AIs. I am on my second one, letrozole, and I am miserable. I do like how I feel when I'm fasting, so I'll continue to do that. It seems that for every complaint, there's another medication for me to take.

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This is a serious issue for those of us with co-morbidities such as heart disease and bone density issues post-menopause when our oncologists recommend such medical treatment - post lumpectomy or mastectomy & chemo nor radiation would not be indicated for us.
I understand tamoxifen is indicated only for pre-menopausal women(??)
And all 3 AI's have the same side effects but can possibly a change can be an improvement if having serious issues with another one - it's all how our bodies react to it.
worried1111: I, too, would like to see your source of your study indicating a re-occurrence chance decreases by 50% - my number is 4% within 9 years of AI treatment as per the oncotype diagnostic testing, so in 9 years it would 2% re-occurrence chance? Personally I would not depend on ground seed flax treatment - but whatever you feel works for you! No judgement here.
And jig4891: Lots of questions re: fasting more than 13 hours...how often do you do this? are you taking the AI while fasting? what is your fasting schedule and how does it make you feel better? do you get relief from the side effects of the AI during your fasting time period?
I am 70 years young and my bilateral mastectomy was in May. Stage 1 in left breast, stage IIa in right breast.
Vitamin D3 & Calcium supplements indicated...but the range for the calcium is 1200-1500 mg. daily. The calcium supplements are so expensive, impossible just to take 10 pills per day to reach this goal. So, calcium rich foods indicated. I am going to check with my nutritionist to get her thoughts. Also, strength training is very important at our age for our bones to prevent fractures. Will look into that also.
Lots of us are between a rock and a hard place with cancer...when the follow up recommendation is only AIs.
What to do? I don't believe any of us are getting clear information from our oncologists about this so we can make an informed decision that makes sense.

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I have osteoporosis. ILC stage 1B.
I refused to take tamoxifen as my aunt had ovarian cancer. I have arrhythmias.

I started Breckinridge Letrozole on. 3/18/23 and lasted 17 mo.
on that.
Reached a point of unbearable pain in my entire hips.
Switched to Accord Letrozole a month later as it has less symptoms and recommended on an England BC site as the best one by women there.
Now at 2 yr 3 months point and having Achilles tendon pain and heal pain on right foot. I have a hard time walking in the night and when getting up.
Have a hard time walking and losing muscle strength which is a Letrozole side effect.

Have been advised to go off Accord Letrozole for 3 months and go on Extremesine which can cause carpal tunnel problems and heart problems.
Plus Estremesine causes all kinds of arm difficulties and pain .
Do I need to add these to the leg and muscle pain that I have?

Am 77. Have refused any bone meds. 3 Doctors told me not to take calcium tablets.
My osteoporosis only got very slightly worse.
Am taking Vitamin K with vitamin D which puts the calcium on the bones.
Magnesium is needed too for bones but not at same time so take at bedtime.

I still am taking the Letrozole so far.
I can’t reach a decision about what to do.
Another thought is that I could switch to a 3rd brand of Letrozole which was not even suggested or thought of by the medical oncologist.
All these AI’s have different additives which can cause different problems in those allergic to them.

I would be 80 when getting to the 5 year point.

Plus, am exhausted all the time which we all are.

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I just started the fasting, but it does help with my blood sugar issues. I also eat low carb—ish diet, which for me, means I avoid the processed foods and high glycemic foods. Here is an article that discusses the study and the limitations. I’ve done intermittent fasting before all of this, a few years ago, and it’s always made me feel generally better. I listen to Dr Mindy Pelz on YouTube. She teaches about IF.
https://www.breastcancer.org/research-news/can-fasting-reduce-recurrence-risk

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@briarrose

This is a serious issue for those of us with co-morbidities such as heart disease and bone density issues post-menopause when our oncologists recommend such medical treatment - post lumpectomy or mastectomy & chemo nor radiation would not be indicated for us.
I understand tamoxifen is indicated only for pre-menopausal women(??)
And all 3 AI's have the same side effects but can possibly a change can be an improvement if having serious issues with another one - it's all how our bodies react to it.
worried1111: I, too, would like to see your source of your study indicating a re-occurrence chance decreases by 50% - my number is 4% within 9 years of AI treatment as per the oncotype diagnostic testing, so in 9 years it would 2% re-occurrence chance? Personally I would not depend on ground seed flax treatment - but whatever you feel works for you! No judgement here.
And jig4891: Lots of questions re: fasting more than 13 hours...how often do you do this? are you taking the AI while fasting? what is your fasting schedule and how does it make you feel better? do you get relief from the side effects of the AI during your fasting time period?
I am 70 years young and my bilateral mastectomy was in May. Stage 1 in left breast, stage IIa in right breast.
Vitamin D3 & Calcium supplements indicated...but the range for the calcium is 1200-1500 mg. daily. The calcium supplements are so expensive, impossible just to take 10 pills per day to reach this goal. So, calcium rich foods indicated. I am going to check with my nutritionist to get her thoughts. Also, strength training is very important at our age for our bones to prevent fractures. Will look into that also.
Lots of us are between a rock and a hard place with cancer...when the follow up recommendation is only AIs.
What to do? I don't believe any of us are getting clear information from our oncologists about this so we can make an informed decision that makes sense.

Jump to this post

See my comment below. I meant to reply to you, but I apparently just created a new comment. 😂

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@timely

I have osteoporosis. ILC stage 1B.
I refused to take tamoxifen as my aunt had ovarian cancer. I have arrhythmias.

I started Breckinridge Letrozole on. 3/18/23 and lasted 17 mo.
on that.
Reached a point of unbearable pain in my entire hips.
Switched to Accord Letrozole a month later as it has less symptoms and recommended on an England BC site as the best one by women there.
Now at 2 yr 3 months point and having Achilles tendon pain and heal pain on right foot. I have a hard time walking in the night and when getting up.
Have a hard time walking and losing muscle strength which is a Letrozole side effect.

Have been advised to go off Accord Letrozole for 3 months and go on Extremesine which can cause carpal tunnel problems and heart problems.
Plus Estremesine causes all kinds of arm difficulties and pain .
Do I need to add these to the leg and muscle pain that I have?

Am 77. Have refused any bone meds. 3 Doctors told me not to take calcium tablets.
My osteoporosis only got very slightly worse.
Am taking Vitamin K with vitamin D which puts the calcium on the bones.
Magnesium is needed too for bones but not at same time so take at bedtime.

I still am taking the Letrozole so far.
I can’t reach a decision about what to do.
Another thought is that I could switch to a 3rd brand of Letrozole which was not even suggested or thought of by the medical oncologist.
All these AI’s have different additives which can cause different problems in those allergic to them.

I would be 80 when getting to the 5 year point.

Plus, am exhausted all the time which we all are.

Jump to this post

Hi! @timely :

I am so sorry for all you've been through, my comrade; surely fighting the disease of BC is no walking in the park:(

Could you please let us know the reason for avoiding taking calcium tablets, please? I know 3 doctors had avised you on this, but did they give you the reason why?

Prayer for you and all of us for better health with plenty of pleasure enjoying beloved family on journey ahead!

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@lifetraveler

Hi! @timely :

I am so sorry for all you've been through, my comrade; surely fighting the disease of BC is no walking in the park:(

Could you please let us know the reason for avoiding taking calcium tablets, please? I know 3 doctors had avised you on this, but did they give you the reason why?

Prayer for you and all of us for better health with plenty of pleasure enjoying beloved family on journey ahead!

Jump to this post

Hi. I take Toremifene which is a “serm” to tamoxifen. Fewer side effects for me than anastrozole. I am 72 years old. Way past menopause. Estrogen positive.

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This is all so interesting—and disheartening— as I am just starting on letrozole for ILC. If I wind up with such bad side effects, wouldn’t it be wiser to just do mastectomy and avoid all the possible side effects? I get more disillusioned the more I read and want to believe doctors know best..,and then seeing that taking letrozole could cause so many problems to an aging (78 yo) body. I need some positives on how to proceed. Wish everyone well on our journey!

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