Concerned about the side effects of anastrozole

Posted by tinalove @tinalove, Jan 31, 2016

I completed all treatments for breast cancer but now I am supposed to take hormone blocker, named anastrozole. im concerned about the side effects. Has anyone here taken it and did anyone have hair loss?

@samy

Thank you all for the replies. I’ll be asking a lot of questions of my oncologist (dear God, I can believe I have an oncologist). No doubt all my questions have been asked before by some other victim of this horror. 75% are good odds, but these stories are so distressing. If the day is filled with pain sufficient to debilitate, the cure is as bad or worse than the disease. I’ll be 69 in June, and it sure doesn’t sound like taking any of this poison until the age of 74 is worth it.

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@samy,- Samy, I definitely understand your indecision and hesitation about taking an AI drug. You are only 69, though, and to me, that's YOUNG! I'm nearly 75. I have a husband, daughter, son-in-law, and two beautiful young grandchildren. I tutor children during the week. I don't want to take the chance of having a recurring bout of cancer that could possibly take my life away. I've been on Arimidex for 15 months and I have good days and not so good days with the side effects. It seems from this forum that most of the AIs have similar side effects. I guess we all have to decide how we're going to tackle this and I hope some day, a better medicine will be discovered. For now, though, I have to choose staying on the ones that are now available to us. I truly do understand your quandary, though. I hope you stay with this forum, though. It is a comfort!

Liked by cindylb, buckimom, samy

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@francine6829

my doctor was the one who recommended Aromasin over Femura. I have not found any studies that discussed the steroid effect of aromasin so I don't know if there is enough steroid to make a difference.

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There are two types of aromatase inhibitors based on their structure:
– Steroidal inhibitors, such as exemestane (Aromasin)
– Nonsteroidal inhibitors, such as the anastrozole (Arimidex) and letrozole (Femara)

Here is one study comparing them:
– Aromatase Inhibitors: Are There Differences Between Steroidal and Nonsteroidal Aromatase Inhibitors and Do They Matter? (2008) http://theoncologist.alphamedpress.org/content/13/8/829.full

The study focuses on the mechanism of action and effectiveness. It doesn't discuss side effects.

I thought everyone might also appreciate this article about exercise and AIs:
– Exercise Helps Ease Aromatase Inhibitor Side Effects https://www.breastcancer.org/research-news/exercise-helps-ease-ai-side-effects

Liked by cindylb, buckimom

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@samy

Hello. New member of the club, here. Stage 1 lobular on the left, LCIS right. Lumpectomy surgery couple weeks ago. The surgeon says radiation for a month and Arimidex for 5 years. I’m 68 and wondering if I should just do the radiation and screw the hormone stuff. Former smoker with mild COPD, currently on BP and cholesterol meds that are doing fine. The internet research of Arimidex is the reason I’m here. … and … frankly, you’ve all terrified me. Quality of life on this drug sounds like an absolute nightmare.

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I had to think of it another way. It was this or risk recurrence! Exercise, Restorative Yoga and mindfulness help. A friend has encouraged me to take Claritin. Hopefully that will help.

Liked by cindylb, samy

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@sparklegram

@samy,- Samy, I definitely understand your indecision and hesitation about taking an AI drug. You are only 69, though, and to me, that's YOUNG! I'm nearly 75. I have a husband, daughter, son-in-law, and two beautiful young grandchildren. I tutor children during the week. I don't want to take the chance of having a recurring bout of cancer that could possibly take my life away. I've been on Arimidex for 15 months and I have good days and not so good days with the side effects. It seems from this forum that most of the AIs have similar side effects. I guess we all have to decide how we're going to tackle this and I hope some day, a better medicine will be discovered. For now, though, I have to choose staying on the ones that are now available to us. I truly do understand your quandary, though. I hope you stay with this forum, though. It is a comfort!

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Thanks for the response. Family isn’t a real motivation for me, beyond my husband. Never had kids, everybody else distant, leading their own lives. Mine is a pretty quiet life of writing and this all seems like the life of character, not mine. A nightmare plot or sci-fi. The bad-guy wants to poison character with something that’s supposed to be good for her and she doesn’t know what to do. Cancer will kill her – maybe – not really sure when, but these pills will likely make her miserable for the rest of her life. What does she decide. The plot thickens and the writer wants to scream. Stupid ramble, but whatever ….

Liked by cindylb

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@colleenyoung

There are two types of aromatase inhibitors based on their structure:
– Steroidal inhibitors, such as exemestane (Aromasin)
– Nonsteroidal inhibitors, such as the anastrozole (Arimidex) and letrozole (Femara)

Here is one study comparing them:
– Aromatase Inhibitors: Are There Differences Between Steroidal and Nonsteroidal Aromatase Inhibitors and Do They Matter? (2008) http://theoncologist.alphamedpress.org/content/13/8/829.full

The study focuses on the mechanism of action and effectiveness. It doesn't discuss side effects.

I thought everyone might also appreciate this article about exercise and AIs:
– Exercise Helps Ease Aromatase Inhibitor Side Effects https://www.breastcancer.org/research-news/exercise-helps-ease-ai-side-effects

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Thank you Colleen for the two links. Since the AI article did not discuss side effects, I did not relate to it. Can you find a study that discusses the effectiveness or re-occurrence using Tamoxifen vs AIs for postmenopausal women. I am asking because I may end up with Tamoxifen as it does not cause the joint pain from AIs. On exercise, I exercise everyday for at least 90 minutes and do Yoga. Unfortunately, none of this has helped my joint pain.

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@tammyp

I had to think of it another way. It was this or risk recurrence! Exercise, Restorative Yoga and mindfulness help. A friend has encouraged me to take Claritin. Hopefully that will help.

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Claritin did not help me.

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I have been on letrozole and aromasin and have not had any hair loss – big joint pain.

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@samy

Thank you all for the replies. I’ll be asking a lot of questions of my oncologist (dear God, I can believe I have an oncologist). No doubt all my questions have been asked before by some other victim of this horror. 75% are good odds, but these stories are so distressing. If the day is filled with pain sufficient to debilitate, the cure is as bad or worse than the disease. I’ll be 69 in June, and it sure doesn’t sound like taking any of this poison until the age of 74 is worth it.

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Samy and francine6829 – When you hear those words 'cancer' it's a horrifying moment. Cancer has this mystery surrounding it because the truth is, the doctors don't really know how to 'cure' it. You make it through the shock, then the treatments, whether that's surgery (often and likely in breast cancer) and then possibly radiation and chemo and immunotherapy and targeted therapy and………….the AI drugs. It feels like the onslaught of bad news and feeling bad will never stop. I lost seven pounds before I ever had surgery (stress) and then another 20 after surgery. I'm not complaining about the weight loss, I needed to drop those pounds (and that's the only good thing that I got from cancer so far).

It does get better!!!!! It's never a happy, unicorns dancing in a field of flowers near a golden rainbow thing…but it does get better. But it takes time. I had to wrap my head around 'why me', 'will it come back', 'will I feel awful like this forever',

I had complications during surgery and complications after surgery and lymphedema (which was corrected with revision surgery). That was all in the first 1 1/2 …but now, 3 1/2 years in, I still worry, things are different for me, but I don't think about it all the time anymore.

I am settled with my decision not to get reconstruction and with not taking the AI's but it took a long time to process and accept my decisions. I didn't want to compromise my day to day well being but I also don't want to die from cancer. The choice is very, very tough.

Two things to consider: It's not an 'all or nothing' decision. You can try the AI's and see how you react. You can try 3 or 4 of them (I did) to see how they affect you and what you can manage and live with. And you can work with your doctor and other survivors to manage side effects or process your decision not to take them. The hardest part is having to make the decision between two sometimes bad choices. And………….breast cancer is one of the cancers with good outcomes for many. I prefer this to a cancer where the 'part' cannot be easily removed …..pancreas, liver, bones, blood………We can remove our breasts or parts of them and still live normal lives, not so much our small intestine, say….. Those are the last words my surgeon told me as we went into surgery (I was very nervous)…….she said, 'just be glad I'm not removing your pancreas'….ha ha…..it stuck with me
Keeping breast cancer from spreading to your bones or brain or lung or liver or……….that's a strong consideration for being as aggressive as you can be without ruining your day to day life.

And finally, the survivor rate of 5 and 10 years for breast cancer patients is very high. Don't forget to read those posts and articles as well. It helps to find glimmers of hope wherever you can.

Hugs……….the decisions are really tough. This Mayo site has been a real blessing for me….from the moderators to all the wonderful people here who are quick to lend and ear and share.

REPLY
@cindylb

Samy and francine6829 – When you hear those words 'cancer' it's a horrifying moment. Cancer has this mystery surrounding it because the truth is, the doctors don't really know how to 'cure' it. You make it through the shock, then the treatments, whether that's surgery (often and likely in breast cancer) and then possibly radiation and chemo and immunotherapy and targeted therapy and………….the AI drugs. It feels like the onslaught of bad news and feeling bad will never stop. I lost seven pounds before I ever had surgery (stress) and then another 20 after surgery. I'm not complaining about the weight loss, I needed to drop those pounds (and that's the only good thing that I got from cancer so far).

It does get better!!!!! It's never a happy, unicorns dancing in a field of flowers near a golden rainbow thing…but it does get better. But it takes time. I had to wrap my head around 'why me', 'will it come back', 'will I feel awful like this forever',

I had complications during surgery and complications after surgery and lymphedema (which was corrected with revision surgery). That was all in the first 1 1/2 …but now, 3 1/2 years in, I still worry, things are different for me, but I don't think about it all the time anymore.

I am settled with my decision not to get reconstruction and with not taking the AI's but it took a long time to process and accept my decisions. I didn't want to compromise my day to day well being but I also don't want to die from cancer. The choice is very, very tough.

Two things to consider: It's not an 'all or nothing' decision. You can try the AI's and see how you react. You can try 3 or 4 of them (I did) to see how they affect you and what you can manage and live with. And you can work with your doctor and other survivors to manage side effects or process your decision not to take them. The hardest part is having to make the decision between two sometimes bad choices. And………….breast cancer is one of the cancers with good outcomes for many. I prefer this to a cancer where the 'part' cannot be easily removed …..pancreas, liver, bones, blood………We can remove our breasts or parts of them and still live normal lives, not so much our small intestine, say….. Those are the last words my surgeon told me as we went into surgery (I was very nervous)…….she said, 'just be glad I'm not removing your pancreas'….ha ha…..it stuck with me
Keeping breast cancer from spreading to your bones or brain or lung or liver or……….that's a strong consideration for being as aggressive as you can be without ruining your day to day life.

And finally, the survivor rate of 5 and 10 years for breast cancer patients is very high. Don't forget to read those posts and articles as well. It helps to find glimmers of hope wherever you can.

Hugs……….the decisions are really tough. This Mayo site has been a real blessing for me….from the moderators to all the wonderful people here who are quick to lend and ear and share.

Jump to this post

@cindylb
Well said, Cindy! I had my first lumpectomy which showed invasive and then asked for an MRI which found neuroendocrine differential. NET meaning my cancer can pop up anywhere, i.e. bone, brain, pancreas, etc. They can't get rid of it only control it when it moves on, but the radiation probably took care of the invasive. My surgeon opted to remove all tumors and then reduce both breasts. Her explanation was that even with total mastectomies, there is still breast tissue and cancer does return to mastectomy patients..unfortunately. So even though I have gained the knowledge of "never knowing" my future, I have gained a cute new curly hairstyle AND I've gone from an F+++ bust to a B- or A+ so I no longer look like Ma Kettle of the movies! I have also come to the realization and decision that I will no longer let cancer define me…rather, I am moving on with my life. Yes, I will keep watching, but I'm choosing to live, even if it iss with the aches and pains of the AIs. As Ma Abner of the Lil' Abner comics used to say, "I has spoken!"

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Love your response, Trixie, or should I say, Ma Abner?

Liked by trixie1313

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@cindylb

Samy and francine6829 – When you hear those words 'cancer' it's a horrifying moment. Cancer has this mystery surrounding it because the truth is, the doctors don't really know how to 'cure' it. You make it through the shock, then the treatments, whether that's surgery (often and likely in breast cancer) and then possibly radiation and chemo and immunotherapy and targeted therapy and………….the AI drugs. It feels like the onslaught of bad news and feeling bad will never stop. I lost seven pounds before I ever had surgery (stress) and then another 20 after surgery. I'm not complaining about the weight loss, I needed to drop those pounds (and that's the only good thing that I got from cancer so far).

It does get better!!!!! It's never a happy, unicorns dancing in a field of flowers near a golden rainbow thing…but it does get better. But it takes time. I had to wrap my head around 'why me', 'will it come back', 'will I feel awful like this forever',

I had complications during surgery and complications after surgery and lymphedema (which was corrected with revision surgery). That was all in the first 1 1/2 …but now, 3 1/2 years in, I still worry, things are different for me, but I don't think about it all the time anymore.

I am settled with my decision not to get reconstruction and with not taking the AI's but it took a long time to process and accept my decisions. I didn't want to compromise my day to day well being but I also don't want to die from cancer. The choice is very, very tough.

Two things to consider: It's not an 'all or nothing' decision. You can try the AI's and see how you react. You can try 3 or 4 of them (I did) to see how they affect you and what you can manage and live with. And you can work with your doctor and other survivors to manage side effects or process your decision not to take them. The hardest part is having to make the decision between two sometimes bad choices. And………….breast cancer is one of the cancers with good outcomes for many. I prefer this to a cancer where the 'part' cannot be easily removed …..pancreas, liver, bones, blood………We can remove our breasts or parts of them and still live normal lives, not so much our small intestine, say….. Those are the last words my surgeon told me as we went into surgery (I was very nervous)…….she said, 'just be glad I'm not removing your pancreas'….ha ha…..it stuck with me
Keeping breast cancer from spreading to your bones or brain or lung or liver or……….that's a strong consideration for being as aggressive as you can be without ruining your day to day life.

And finally, the survivor rate of 5 and 10 years for breast cancer patients is very high. Don't forget to read those posts and articles as well. It helps to find glimmers of hope wherever you can.

Hugs……….the decisions are really tough. This Mayo site has been a real blessing for me….from the moderators to all the wonderful people here who are quick to lend and ear and share.

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Thanks for the reply.

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How do you convince your doctor or doctors to run the blood tests or mri!
I am so sick of the scare tactics!
Well, in the beginning your chances of recurrence was 12%. Now with radiation it is 7-10% having a hysterectomy it is 3 to 9 %. But take the meds and you go to 3-5% recurrence…
So, I followed orders except for the meds side effects were way too much.
So next appt doctor gets pissy and says,"Well, now you are at 20% because you won't take your meds and the cancer will return in your bones or lungs get ready!"
We see a new oncologist Monday! Bad thing there: they are good friends! OMG

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Wow !! So that means 80% it won’t return !! He’s not very compassionate!!

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@gwinter

How do you convince your doctor or doctors to run the blood tests or mri!
I am so sick of the scare tactics!
Well, in the beginning your chances of recurrence was 12%. Now with radiation it is 7-10% having a hysterectomy it is 3 to 9 %. But take the meds and you go to 3-5% recurrence…
So, I followed orders except for the meds side effects were way too much.
So next appt doctor gets pissy and says,"Well, now you are at 20% because you won't take your meds and the cancer will return in your bones or lungs get ready!"
We see a new oncologist Monday! Bad thing there: they are good friends! OMG

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I have not told my doctor I’m not taking the meds. I don’t want to listen to their crap.

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@gwinter

How do you convince your doctor or doctors to run the blood tests or mri!
I am so sick of the scare tactics!
Well, in the beginning your chances of recurrence was 12%. Now with radiation it is 7-10% having a hysterectomy it is 3 to 9 %. But take the meds and you go to 3-5% recurrence…
So, I followed orders except for the meds side effects were way too much.
So next appt doctor gets pissy and says,"Well, now you are at 20% because you won't take your meds and the cancer will return in your bones or lungs get ready!"
We see a new oncologist Monday! Bad thing there: they are good friends! OMG

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I am so sorry you're having these issues with the doctors. This is way too important for you not to feel comfortable with your doctors! Never a bad idea to get a second opinion or change doctors if you're not feeling 100% comfortable.

I have had 4 oncologists in 5 years. Some was due to insurance changes out of my control and some was my choice. I've very happy with my current oncologist. He hears me and respects my decisions. He offers alternatives and gives me the straight scoop. He's holistic and helps me feel comfortable with my journey. If you don't like your doctor………..find another and another and whatever it takes. Cancer if hard enough.

Hugs

Liked by elizm

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