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?

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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.

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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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@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?

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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

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@cindylb

samy - Once you're settled in with your other treatments, give the Arimidex a try. You could be the person who has few if any side effects and yet you'll get the upside of lowering your recurrence. You don't know until you try. I wasn't able to use any of them BUT I'm allergic to many things (antibiotics is a big one) and I can't take ibuprofen anymore either (bleeding)......so I'm just not a 'pill girl'. I take no prescription meds at all and my doctors look terrified when they have to give me one, ha ha! Give them a try because you can always quit or change meds if you're having problems.
FYI - I was Stage 1 lobular on my right and LCIS on my left----we're like twins (only opposite?).
Hugs

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In a message subsequent to this, you indicated that you decided not to take the AI drug(s). Have you ever taken them, i.e., did you stop or just never start? The decision I’m grappling with is taking this drug at all. As I said, I’m 69 in a month - is Stage 1 survival going to be that much different with or without this drug? And is poor quality of life for a huge % of the rest of my life worth it? I realize I’m “only” 69, but in 5 years that’s “only” 74 - it just doesn’t seem worth it and I’d be better off taking my chances with just radiation. I know nobody can say take it, or don’t take it … it’s up to me. But, it’s a horrible choice. I’d still be living with the unknown of “possibly” getting cancer again, whether I subject myself to 5 years of this debilitating drug or not.

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samy - VERY good questions. I am on my second AI (Aromosin) and starting the feel the aches and pains (not as bad as Femura), but still. Have you asked your oncologist if you could go on Tamoxifen? Yes, I know this is a first generation drug, and primarily for pre-menopausal women, HOWEVER, i know postmenapausal women who used it and did not experience side effects. I would like to the reoccurence rates for Tamoxifen vs the new AI drugs?

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