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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When I asked about estrogen hormonal levels I got the answer they really do not know what levels mean. If they were going to do levels they should have done a baseline before starting the drug. My frustration with A1 drugs is not only do they have significant side effects but despite thousands of women who are on these drugs they seem unable to state which women are at risk for side effects. Is it age, is it type of breast cancer, is it BMI, is it women who still have their ovaries. I am glad to see that someone is looking at dosage of these drugs because the concept of one size dose fits all seems not very scientific. Can you have the same efficacy at lower doses. Would lower doses mean lower side effects. The fact that 30-40% of women quit this therapy because of side effects is mind boggling. I have this feeling that all they want to do is treat side effects with other meds that have side effects instead of really looking at who is at risk and how to improve this therapy

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@sandyrob

How did you do on the higher dose of Anastrozole?

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The higher dose definitely lowered my estrogen after 8 weeks. It was 10mg. I had more hot flashes and initially, poor sleep. And about 4 weeks in, I started losing my hair (maybe 5-10 strands a day, but definitely more than usual.) Now I am on Letrozole, since end Dec. Hair loss has continued, but I am sleeping and hot flashes are less.

Any chance your oncologist is Dr G at Mayo? Your process is so similar to mine and he is good at getting people on the study.

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@cedar75

When I asked about estrogen hormonal levels I got the answer they really do not know what levels mean. If they were going to do levels they should have done a baseline before starting the drug. My frustration with A1 drugs is not only do they have significant side effects but despite thousands of women who are on these drugs they seem unable to state which women are at risk for side effects. Is it age, is it type of breast cancer, is it BMI, is it women who still have their ovaries. I am glad to see that someone is looking at dosage of these drugs because the concept of one size dose fits all seems not very scientific. Can you have the same efficacy at lower doses. Would lower doses mean lower side effects. The fact that 30-40% of women quit this therapy because of side effects is mind boggling. I have this feeling that all they want to do is treat side effects with other meds that have side effects instead of really looking at who is at risk and how to improve this therapy

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Absolutely right! Thank you for your comment. It summarizes my questions perfectly. I’m going to keep asking questions. Like you said, I don’t believe I EVEN have a baseline. You would think that if they know the cancer was estrogen positive, they would be check my ‘levels’. 🤷‍♀️

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@cedar75

When I asked about estrogen hormonal levels I got the answer they really do not know what levels mean. If they were going to do levels they should have done a baseline before starting the drug. My frustration with A1 drugs is not only do they have significant side effects but despite thousands of women who are on these drugs they seem unable to state which women are at risk for side effects. Is it age, is it type of breast cancer, is it BMI, is it women who still have their ovaries. I am glad to see that someone is looking at dosage of these drugs because the concept of one size dose fits all seems not very scientific. Can you have the same efficacy at lower doses. Would lower doses mean lower side effects. The fact that 30-40% of women quit this therapy because of side effects is mind boggling. I have this feeling that all they want to do is treat side effects with other meds that have side effects instead of really looking at who is at risk and how to improve this therapy

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Not sure what kind of breast cancer you have but if you have DCIS low dose tamoxifen may be an option. I am unable to post the link to breastcancer.org that has information on this.

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@auksst

Not sure what kind of breast cancer you have but if you have DCIS low dose tamoxifen may be an option. I am unable to post the link to breastcancer.org that has information on this.

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Hi Auksst, I noticed that you wished to post a URL to a resource with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

- Low-Dose Tamoxifen May Be an Option to Reduce Risk of Recurrence, Invasive Disease After Non-Invasive Breast Cancer https://www.breastcancer.org/research-news/low-dose-tamoxifen-after-non-invasive-dx

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@jejones

The higher dose definitely lowered my estrogen after 8 weeks. It was 10mg. I had more hot flashes and initially, poor sleep. And about 4 weeks in, I started losing my hair (maybe 5-10 strands a day, but definitely more than usual.) Now I am on Letrozole, since end Dec. Hair loss has continued, but I am sleeping and hot flashes are less.

Any chance your oncologist is Dr G at Mayo? Your process is so similar to mine and he is good at getting people on the study.

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Yes, same doctor. I have Stage1a, IDC, Pr+ Es+, Her2- . Could have opted out of radiation but am doing the 3 day.

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I am Her2+ER-. Diagnosed Mets in 2018 in Liver. Lesions NAD on Herceptin Perjeta. Now new lesion in Duodenum. On Kadcyla, and needed duodenal stent as lesion was causing blockage. Lesion again stable (NAD on last 2 PET scans. ) A Whipple procedure has been recommended as it is felt they can remove the remaining tumour with clear margins. The surgery souds terrifying
Any thoughts?

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@sandyrob

Yes, same doctor. I have Stage1a, IDC, Pr+ Es+, Her2- . Could have opted out of radiation but am doing the 3 day.

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Sounds like great decision!! Blessings on you!

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@alice2oz

I am Her2+ER-. Diagnosed Mets in 2018 in Liver. Lesions NAD on Herceptin Perjeta. Now new lesion in Duodenum. On Kadcyla, and needed duodenal stent as lesion was causing blockage. Lesion again stable (NAD on last 2 PET scans. ) A Whipple procedure has been recommended as it is felt they can remove the remaining tumour with clear margins. The surgery souds terrifying
Any thoughts?

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Hi Alice, I can imagine that the Whipple procedure sounds intimidating. To meet others who have had this surgery, I suggest you pop over to the pancreatic cancer group https://connect.mayoclinic.org/group/pancreatic-cancer/

In particular, see this discussion and post your questions there:
- Whipple procedure: What is the recovery like? https://connect.mayoclinic.org/discussion/pancreatic-cancer-whipple-procedure/

Alice, how are you doing on Herceptin?

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@sequoia

I just today saw my oncologist. I had my surgery 8/2019 and have been on Anastrozole almost 2 years. I am just starting to have joint aches. The hot flashes are nothing new for me. I'm 68. When I inquired about the level of my estrogen in relation to how the med was working, his response was that he takes it for granted in is working. Estrogen is 'suppose' to be sucked out of my body. He said he would have to see if there was an estrogen test. I am pretty well put off with him. Any opinions. What test should I be asking my doctor for to see if the Anastrozole is actually working. I would like to know if i could take it say every other day to keep my estrogen low or do I REALLY need it every day. Just because the protocol is 1 pill a day for everyone doesn't make it the right dosage. Thanks for your post.

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i'm blaming Anastrozole on 2 trigger fingers! Had surgery on 1 pointer finger. Lots f PT - still lots of pain, stiffness. Anyone have Anastrozole affect eye? Eye Dr. says not caused by Anastrozole But! Its like someone took thumb dipped in grey paint and smeared on lower 1/2 of eye. Blurry! Thats' my close up eye! Anyone have eye problems. ? Please tell - I'd rather go off Anastrozole and get breast checked every month then to have these dreadful side effects!

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