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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Profile picture for elizm @elizm

@gwinter It is absolutely a quandary and sometimes a Hobson's Choice. All the time we're reminding ourselves that it's our life and we want to get this right. I switched oncologists during my first week of chemo because the first was so condescending with my questions. The second one and i have good discussions regarding what I've found in my research; that doesn't mean that he agrees with me all the time, but upon occasion he concedes that there are plenty of people in the field who have similar concerns, doubts, etc. as I regarding a treatment standard, for example. This is not easy for the doctors either... each individual patient has chemistry, age, genetic, weight differences, multiplied by all our different cancer profile differences, and the science of cancer changes daily, too. And then there are all the personality differences between people in general (doctors and patients)... they're stressed and we're stressed. It indeed is a quandary!

If you are having trouble tolerating anastrozole, definitely demand that you be switched to another AI (there are many), and to another, if need be, before giving up entirely on them. And, you have the option of doing what I did which was to cut the dose in half and see how that goes. (If I can get somewhere with my chemo-induced neuropathy, I may try easing into a whole dose of anastrozole every other day and see what that feels like.) My argument with my oncologist was to note that I'm extremely sensitive to most pharmaceuticals, and that most women give up on AIs after two years. I'd like to be able to continue taking mine for 7 years, but it may well be at half strength... we'll have to see how that goes.

And don't forget, messing with a woman's hormones is going to have reactions... including your hysterectomy in February... and your body is not static in any event.

Even taking a full dose of any AI does not guarantee an absence of recurrence (another cancer) in two, five, seven, ten, etc. years. That's just the way cancer is and the oncologists know it, too. I will be faithful with my screening mammograms every six months, I will have my bone density tests every two years, I will eat healthfully and exercise and meditate regularly, I will have another colonoscopy in three years, but I also will continue to research applicable updates in the cancer field and be my own "general contractor" with my life (my advanced age of 71 may play a part in that decision). Other patients may prefer to have their doctors make decisions for them and, if that works psychologically for them, then I support their choice. In any event, never hesitate to contact/email/call your physician(s) with questions which you may have. The worst that can happen is that they won't respond, and that is information in itself.

This journey requires a certain amount of bravery, faith, and serenity... and I wish that all for you.

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@elizm, this is a very wise post. I would like to get your tips on this discussion:
- Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

Mayo Clinic would like to make a brief video for patients by patients on how to work with your doctor. Everyone is invited to add their tips.

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Profile picture for gwinter @gwinter

Elizm, thank you for your post! I have been rereading everbodys posts and not sure if I am finding answers or coming up with more questions.
I was diagnosed with stage 1A borderline stage 0 breast cancer. Marginal tissue clear and only 2 lymph nodes out and they also were clear. 20 radiation treatments and was to start arimidex...did once terrible side effects....did again a month later worse side effects plus blood pressure went up! Trying to decide whether to try again. Hysterectomy coming in February...this is so hard to have question everything or email or call doctor. He seems to not believe me. I asked to have hormone level tests and he said absolutely no. Then I read in my paperwork I have only3% of recurrence....this is really a quandary

Jump to this post

@gwinter It is absolutely a quandary and sometimes a Hobson's Choice. All the time we're reminding ourselves that it's our life and we want to get this right. I switched oncologists during my first week of chemo because the first was so condescending with my questions. The second one and i have good discussions regarding what I've found in my research; that doesn't mean that he agrees with me all the time, but upon occasion he concedes that there are plenty of people in the field who have similar concerns, doubts, etc. as I regarding a treatment standard, for example. This is not easy for the doctors either... each individual patient has chemistry, age, genetic, weight differences, multiplied by all our different cancer profile differences, and the science of cancer changes daily, too. And then there are all the personality differences between people in general (doctors and patients)... they're stressed and we're stressed. It indeed is a quandary!

If you are having trouble tolerating anastrozole, definitely demand that you be switched to another AI (there are many), and to another, if need be, before giving up entirely on them. And, you have the option of doing what I did which was to cut the dose in half and see how that goes. (If I can get somewhere with my chemo-induced neuropathy, I may try easing into a whole dose of anastrozole every other day and see what that feels like.) My argument with my oncologist was to note that I'm extremely sensitive to most pharmaceuticals, and that most women give up on AIs after two years. I'd like to be able to continue taking mine for 7 years, but it may well be at half strength... we'll have to see how that goes.

And don't forget, messing with a woman's hormones is going to have reactions... including your hysterectomy in February... and your body is not static in any event.

Even taking a full dose of any AI does not guarantee an absence of recurrence (another cancer) in two, five, seven, ten, etc. years. That's just the way cancer is and the oncologists know it, too. I will be faithful with my screening mammograms every six months, I will have my bone density tests every two years, I will eat healthfully and exercise and meditate regularly, I will have another colonoscopy in three years, but I also will continue to research applicable updates in the cancer field and be my own "general contractor" with my life (my advanced age of 71 may play a part in that decision). Other patients may prefer to have their doctors make decisions for them and, if that works psychologically for them, then I support their choice. In any event, never hesitate to contact/email/call your physician(s) with questions which you may have. The worst that can happen is that they won't respond, and that is information in itself.

This journey requires a certain amount of bravery, faith, and serenity... and I wish that all for you.

REPLY
Profile picture for elizm @elizm

to @gwinter and @cindylb -- My path report for BC was Stage 1, ER positive, HER2+++; ovaries were removed about 10 years ago.

Not to complicate your lives, but here are a few notes from my experience. European oncologists test hormones all the time. It is not standard for American oncologists. I asked mine why that was and was told that each test only gives a reading for that point in time, and that the amount of circulating hormones changes frequently. I suppose that makes sense... I'd still like to be tested and he's not going to it.

Another note: check each of your meds and supplements as to their interaction with hormones. In my case, I was taking a diuretic called spironolactone; it decreases circulating estrogens and androgens. As soon as I started on the anastrozole (I have chosen to take only half a dose/day), I incurred very sore cysts in my breasts and on my ribs. When I switched diuretics, the soreness and cysts disappeared. The oncologist was clueless. Thankfully, I have a GP who works with me. I also take 1,200-2,000 IU of mycillized D3 each day for bone health and learned that it, too, decreases circulating estrogens. There are a number of factors affecting our hormones (and quality of life), and we each must root those out and make them part of the conversation with our oncologists. HUGS!

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Elizm, thank you for your post! I have been rereading everbodys posts and not sure if I am finding answers or coming up with more questions.
I was diagnosed with stage 1A borderline stage 0 breast cancer. Marginal tissue clear and only 2 lymph nodes out and they also were clear. 20 radiation treatments and was to start arimidex...did once terrible side effects....did again a month later worse side effects plus blood pressure went up! Trying to decide whether to try again. Hysterectomy coming in February...this is so hard to have question everything or email or call doctor. He seems to not believe me. I asked to have hormone level tests and he said absolutely no. Then I read in my paperwork I have only3% of recurrence....this is really a quandary

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After three months, I began to experience terrible joint pain and numbness in my fingers, hands & wrists, and fatigue set in — my greatest challenges. No hair loss.
Wishing you good health!

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Profile picture for karenrbach @karenrbach

Yes, of course! For background, I had a hysterectomy at age 45 and my Dr. put me on Premarin to avoid hot flashes, etc. I felt wonderful and took this for 15 years. I had regular mammograms each December and at age 60, my cancer was discovered. I had estrogen positive intraductal cancer stage 2 that had broken through the wall in one year. I had a lumpectomy, chemo therapy, and radiation. It was a rough time but I had huge support from family and friends. Arimidex was prescribed as I said, and took that for 13 years. I think all survivors think about their journey every day and I am so thankful I had the best doctors and treatment. I really had no side effects from the arimidex and am so thankful I am a very healthy 75 year old. I try to share my journey, if asked, if this will help another person.

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It helps a lot! Thank you

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Yes, of course! For background, I had a hysterectomy at age 45 and my Dr. put me on Premarin to avoid hot flashes, etc. I felt wonderful and took this for 15 years. I had regular mammograms each December and at age 60, my cancer was discovered. I had estrogen positive intraductal cancer stage 2 that had broken through the wall in one year. I had a lumpectomy, chemo therapy, and radiation. It was a rough time but I had huge support from family and friends. Arimidex was prescribed as I said, and took that for 13 years. I think all survivors think about their journey every day and I am so thankful I had the best doctors and treatment. I really had no side effects from the arimidex and am so thankful I am a very healthy 75 year old. I try to share my journey, if asked, if this will help another person.

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Profile picture for karenrbach @karenrbach

I am a 14 year breast cancer survivor. My Oncologist had me on arimidex (or generic) 13 years. He retired and my new oncologist discontinued use of this drug last year. She said protocol was 10 years. I am fine and never really had any side effects from this drug. I have had a bone density test every two years to make sure all is well. I consider myself fortunate I never had any of the side effects being described.

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Hi @karenrbach, As a 14 year breast cancer survivor, your experience and knowledge will be welcome on Connect. May I ask what type of breast cancer you had and which treatments besides Arimidex?

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Profile picture for mjpayan @mjpayan

Hi Karen. Protocol from what I know is 5 or perhaps 10 years on Arimidex or other AIs. 2 years in. Able to live with diff affects. Had my bone density test on Monday. We will see.

Glad you are doing well.

My second time around. Tamoxifen the first time. Put me on menopause within months at the age of 48.

I’m good.

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I’m glad you’re doing well and I wish you continued good health!

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In reply to @guntherbear "@mollymiller" + (show)

I am on Aromasin. I have tried Tamixifen and Arimidex and could not handle the memory loss with them. I have joint ache with aromasin and have gained 30 lbs. But I found out that working out 5 days a week for 20 minutes has really helped with the joint ache and I also lost some weight. I had a double mastectomy and I am half way thru my 5 years. Oh and I average 32 hot flashes a day 😔. But I feel the side affects are way better than cancer recurrence 😊@mollymiller

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Profile picture for Molly MIller @mollymiller

Best wishes, fellow Arimidex friend! I find that the Arimidex symptoms vary. Some days are pretty pain-free. I'll stay with it for the whole regimen with the hopes of no reoccurrence and wish the same for you!

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