Completed 5 years of anastrozole. Withdrawal symptoms? Side effects?

Posted by christinej @christinej, Jul 24, 2018

Monday, July 23rd, after consulting with Dr. Loprinzi, we decided to have me stop taking anastrozole. (Arimidex). It has been 5 years since I started the drug after breast cancer surgery and radiation. Has anyone stopped this drug and had any withdrawal symptoms? The nurse from Blue Group sent me an email today saying that there are no withdrawal symptoms after stopping this drug. Soooooooooooooo, is this all in my head? Definitely having some type of withdrawal.

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

@cindyfromindy , I know that other on this thread have talked to their doctors and have switched drugs. There are several options out there. Definitely if the side effects are tolerable staying on some form of AI is very beneficial to you as a return to cancer treatments is no fun either. How are you doing now?

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@uncompromised

So very glad to have found these posts. I have been taking Armidex for over 10 yrs. I just stopped 9 days ago. Is it possible that is the cause of this extreme fatigue I am experiencing? I am aching in neck, back, chest, breast… It never crossed my mind it could be stopping the Armidex.

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Absolutely! I read back through every post on this thread, this is a common theme to the comments of withdrawal. The timing of my own withdrawal did not allow me to think about it, as I was responsible for the care of others. I did feel fatigue but I am a “just keep pushing” kind of girl. Please allow yourself to rest, and try to stay in motion when you can. Congratulations in making your full sentence. You gained the piece of mind of doing absolutely everything you could do to prevent it from coming back. I hope these side effects ease soon, have you called your doctor about this?

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@colleenyoung

@thatgirl2, can you share your experience completing exemestane? Did you experience symptoms once you stopped the drug?

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Hi there - my apologies for the delay with this response - life has been busy! I completed my Exemestane therapy without any problems - based on what my Nurse Practitioner and Physician told me, I knew it was a worthwhile investment towards staying healthy. I also made sure (and still continue) to walk at a cardio pace at least 5 days a week to keep my joints moving.

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@thatgirl2

Hi there - my apologies for the delay with this response - life has been busy! I completed my Exemestane therapy without any problems - based on what my Nurse Practitioner and Physician told me, I knew it was a worthwhile investment towards staying healthy. I also made sure (and still continue) to walk at a cardio pace at least 5 days a week to keep my joints moving.

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Wow, I applaud you for taking this huge step for continued health. It may not be easy but it is worth it.

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Yeah, I'm having all of those side effects of stopping Letrozole which I only took for 2.5 weeks due to the suicidal thoughts and insane amount of energy the pills gave me, to the point where everyone was concerned; and now that I've stopped I'm absolutely exhausted from those 2.5 weeks of bone pain, joint pain, suicidal ideations (I've never been depressed), increase in blood pressure, increase in cholesterol, osteoporosis and osteopenia, nausea and constipation so bad...you don't want to know how I had to handle that!

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@cindyfromindy

Hello, I’m just curious if you found an alternative treatment? I started Anastrozole for two months now and I’m feeling pain in the joints of my feet already. I am not overweight and never had any health issues until breast cancer. If I stay on the inhibitor then my chances of reoccurrence drops from 26% to 14%.

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Due to the side effects I had with all three of the AI's, including generic and brands of anastrozole, exemestane and letrozole; I had to stop or I would have been in deep emotional trouble as all three caused suicide ideations (in addition to all of the side effects I had) which is not even in the realm of possibility for me under normal circumstances. Given that situation, and the terrible situation of getting adequate healthcare during COVID 19 which has destroyed the medical community where I live in Prescott, AZ; I have chosen to go the naturopathic route. I am NOT recommending the following to anyone, just sharing what my naturopath has successfully treated other hormone positie breast cancer patients who are post menopausal and who could not tolerate the prescription AI's, and they have seen great reductions in estrogen and aromatase inhibition. There are a ton of natural AI's out there which as someone who writes medical research grants I was surprised that there are clinical trials of Turkey Tail Mushroom (the active ingredient is PSK which is prescribed in Japan to every cancer patient, and Japan has a 4% lower mortality rate than the US. In Asia they treat the whole body, not just the cancer! So the initial supplement I was prescribed which I will begin taking in 2 weeks after my body recovers from the Letrozole detox; is called "SuperSmart, Natural Anti Aromatase support." Plus a long list of dietary changes and other supplements like Turkey tail powder and Lionsmane for managing mental side effects. The SuperSmart supplement has in it: Chrysin, DIM, FlaxSeed, zinc, which are all aromatase inhibitors that are natural. There are other ingredients and the label is in French as this product is widely used there so I had to do some google translate to know what I'm taking.

Also, a complete dietary change which starves cancer. The basic idea is to have more alkaline than acid. Creating an environment in the body that doesn't allow or support the growth of cancer, and even more that inhibits the Aromatase Enzyme which causes hormone positive tumors to form.

I'm not gonna lie, my husband is a famous chef and wine expert here in the US and the diet is going to be the most difficult part of my transition to the natural way of addressing cancer.

Last night I watched a documentary on Amazon Prime called "Heal" which as someone that is driven to succeed really makes the point about negative emotions causing disease and shows you people who have literally recovered from Stage 4 metastatic breast cancer...

Again, I truly wanted the AI's to work, but the side effects were intolerable. We must do better for the 50% of women that were "lost to followup" in the clinical trials for the AI's; due to the horrible side effects. I am not recommending anything to you, only sharing where I am with regards to my treatment for the next 5 years...

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@katehanni

Due to the side effects I had with all three of the AI's, including generic and brands of anastrozole, exemestane and letrozole; I had to stop or I would have been in deep emotional trouble as all three caused suicide ideations (in addition to all of the side effects I had) which is not even in the realm of possibility for me under normal circumstances. Given that situation, and the terrible situation of getting adequate healthcare during COVID 19 which has destroyed the medical community where I live in Prescott, AZ; I have chosen to go the naturopathic route. I am NOT recommending the following to anyone, just sharing what my naturopath has successfully treated other hormone positie breast cancer patients who are post menopausal and who could not tolerate the prescription AI's, and they have seen great reductions in estrogen and aromatase inhibition. There are a ton of natural AI's out there which as someone who writes medical research grants I was surprised that there are clinical trials of Turkey Tail Mushroom (the active ingredient is PSK which is prescribed in Japan to every cancer patient, and Japan has a 4% lower mortality rate than the US. In Asia they treat the whole body, not just the cancer! So the initial supplement I was prescribed which I will begin taking in 2 weeks after my body recovers from the Letrozole detox; is called "SuperSmart, Natural Anti Aromatase support." Plus a long list of dietary changes and other supplements like Turkey tail powder and Lionsmane for managing mental side effects. The SuperSmart supplement has in it: Chrysin, DIM, FlaxSeed, zinc, which are all aromatase inhibitors that are natural. There are other ingredients and the label is in French as this product is widely used there so I had to do some google translate to know what I'm taking.

Also, a complete dietary change which starves cancer. The basic idea is to have more alkaline than acid. Creating an environment in the body that doesn't allow or support the growth of cancer, and even more that inhibits the Aromatase Enzyme which causes hormone positive tumors to form.

I'm not gonna lie, my husband is a famous chef and wine expert here in the US and the diet is going to be the most difficult part of my transition to the natural way of addressing cancer.

Last night I watched a documentary on Amazon Prime called "Heal" which as someone that is driven to succeed really makes the point about negative emotions causing disease and shows you people who have literally recovered from Stage 4 metastatic breast cancer...

Again, I truly wanted the AI's to work, but the side effects were intolerable. We must do better for the 50% of women that were "lost to followup" in the clinical trials for the AI's; due to the horrible side effects. I am not recommending anything to you, only sharing where I am with regards to my treatment for the next 5 years...

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Super nerd here. I would be interested to read the studies you quoted, if you have the links, or maybe the abstracts for the research on those compounds?

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Here's what I'll tell you. Very few of the natural AI's have had big clinical trials meaning thousands of people. But it's important to note that there is no incentive for pharma to clinical trial a natural AI that grows in nature and is pretty easily obtained... Obviously that makes a difference. But when I found out that Japan prescribes PSK from Turkey Tail to EVERY SINGLE cancer patient; I was excited. I'm actually writing a medical research grant and need to stay on task but at the end of the day I'll post the citations with the caveat that I've told you these trials are not as large as the Big I-98 and others. I would not have decided to go this route if ANY of the AI's were tolerable, but at this point I feel better taking the natural AI's, assuming I don't have the side effects I had with the pill form AI's, as it will give me a bit more confidence that I'm doing something to prevent recurrence.

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Cool, I am interested.

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@auntioakley that's a cool moniker! Do you work at Mayo?

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