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?

@cindylb

You're on ……we will post our best 'active imagination' thoughts and perhaps we'll see how unrealistic they really are? Thank you for your kind thoughts. I hope you'll wake to a pain free, stress free day tomorrow!

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You've met your match. I too have a second possible cancer lurking in the back of my mind. I have decided that it is a result of a conspiracy theory so evil that your rash will go away as soon as you hear my story. I am due for a colonoscopy this year. I kew it, but ignored it. Lo and behold, a letter arrives from the colonoscopy doctor…Time for your 10 year colonoscopy! I ignored it. I can see getting a notice for a mammogram or a dental cleaning, but a TEN YEAR test? SO, I mentioned the letter to my internist who said, "Oh yes! I'll call colonoscopy doc and set up an appointment!" I said, "No." I asked about the ColonGuard at Home test and the internist had one shipped to me. I ignored….'Put it in the back of my linen closet. About a month later I received a letter from ColonGuard offering me a $35.00 American Express Card if I would complete the test and send it in. Well, why not? My colon seems fine and all the colons that came before mine on both sides of the family were fine. For $35 I will degrade and frustrate myself. I sent it in and forgot about it, waiting for my "prize". No prize yet but my internist called and said that my test was positive. As you, I worship at the alter of the internet so I determined that the odds were this test was a false positive and in fact the results were planned long before my creepy box of fecal matter was even in the mail. Internist, colonoscopy doc and ColonGuard all in cahoots. It couldn't be clearer to me….Except that I too feel that I have a second cancer. I wake up with the thought daily, then move onto checking my axillary node areas (there are hardly any left) and then come downstairs and dose up on coffee…..Probably bad for both breast and colon cancer. YES! I am planning for the worst and not doing anything about it. Here is what will melt your rash into oblivion. Last week I received my monthly Medicare statement. The ColonGuard (which tests DNA) was billed at $4,000. Medicare and my supplement paid a total of $0.00. However, I was not held responsible for the $4,000 either. So, what's the deal? Who wins? I suppose the internist gets a fruit basket from my colonoscopy doctor at Christmas and the colonoscopy doc gets to bill Medicare for doing a questionable colonoscopy on me. If I ever get the colonoscopy and if it is positive, I won't be undergoing treatment for it. The breast cancer treatments were/are all I can handle. OK, do you surrender? Or do you have a worse example of fertile imagination syndrome? I already have an example of worry beyond belief from when I was 8 years old….60 years ago and it's still with me! You'll have to wait and see!

Liked by cindylb

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@cindylb

You're on ……we will post our best 'active imagination' thoughts and perhaps we'll see how unrealistic they really are? Thank you for your kind thoughts. I hope you'll wake to a pain free, stress free day tomorrow!

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P.S. ~ I hope our humorous banter doesn't get us tossed off the Mayo Clinic site! One more thing to think about…A knock on the door ~ Men wearing white coats and stethoscopes….."May we take a listen to your brain, please?" SEE? I can't help it!

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@cindylb

You're on ……we will post our best 'active imagination' thoughts and perhaps we'll see how unrealistic they really are? Thank you for your kind thoughts. I hope you'll wake to a pain free, stress free day tomorrow!

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OK, so I'm giving you this first round as a win! (ha ha). I have been told many times to get my colonoscopy (I just turned 60) by my oncologist. I've done those stool sample tests each year (until this year, explanation later) and they have come back negative BUT I have a history of Irritable Bowel Syndrome and I sometimes have blood in my stool, especially when I was on Arimidex for the breast cancer. This conversation will come up in my next check up as my oncologist has said to me that there is a connection between breast and colon cancer. Also, have a friend whose husband ignored his colonoscopy a little too long and is now going through treatment for colon cancer. Here's the rub on all of this……It's great to catch these things early and have a reasonable chance of fixing them but also if you look long enough you will find things…..it's inevitable. It's a toss up sometimes. Keep doing tests and getting medical intervention and stressing yourself out or accepting the inevitable, we're all going to get something or a couple somethings. I don't think I've given you any comfort here have I? Sorry about that.

Explanation of lack of colonoscopy above and my new submission is as follows – I was let go from my full time job with benefits back in September 2017 because…………my employer said it was too expensive to keep me on benefits. Smaller employer (part of a much larger, well know non profit organization, known for their good works and kindness). They offered me a part time, hourly job, with no benefits. The impetus I believe was that they had just changed insurance plans and companies to reduce their overall cost for all employees. I chose not to stay with a part time, hourly job and no benefits (kind of need those for breast cancer) and one other employee was made the same offer and stayed. The other employee….yup, has just completed breast cancer treatment. We were both 'demoted' to no benefits because we had breast cancer.(Yes, it's illegal). Now I have Cobra and unaffordable benefits, so I simply don't go to the doctor anymore, which I know is scary and which is my new 'anxiety'. A simple check up with my doctor for the breast cancer is around $1,000 (high deductible o $6,000). My doctor is working with me but the prices of any real follow up are out of reach for me. I have been looking for work with benefits and working part time and odd jobs in the meantime but now my husband has gone through 3 months of testing for cancer which might be lung or????? They haven't quite figured it out, thousands of dollars later. I'm hoping that stress isn't what causes cancer because I'm a goner! Your turn and I hope you're having a good day today…anxiety aside.

Liked by Molly MIller

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Hi, Cindy B~I received your response but it stopped abruptly, in the middle of a sentence, so I am assuming something urgent happened. Or maybe we are getting banned…Or something else not good. While I was sitting here the colonoscopy doctor's office called and left a message for me to call and schedule an appointment. Second call. Still not sure, but I did not know there was a connection between breast and colon cancer. That will hang over me the rest of the day. SO, I await the 2nd part of your post. Molly

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I was diagnosed in 2016. I had lumpectomy and radiation. I have taken three different anastrolzole meds. Decided on Letrozole. It had the least side affects for me. Just a sore ankle. Feels like I sprained it. It come off and on. I am due for a bone scan (every 2 years) so I’ll see where I am at. I had a baseline initially after I started drug. Take care ladies. We’ll beat!

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Hi. My name is Silvia from Uruguay. I have Been taking anastrozole since 2012. I received Also trastazumab. 18shots and also chemo. The problems associated with anastrozole Must be related with aging. But I cant have a negative control. Pain in joints (knees) but It could be relieved with gym. Running in my case. Hot flushes, problems yo fall to sleep and gaining weight. But what could happened without pills? I dont know

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@silviabeatriz

Hi. My name is Silvia from Uruguay. I have Been taking anastrozole since 2012. I received Also trastazumab. 18shots and also chemo. The problems associated with anastrozole Must be related with aging. But I cant have a negative control. Pain in joints (knees) but It could be relieved with gym. Running in my case. Hot flushes, problems yo fall to sleep and gaining weight. But what could happened without pills? I dont know

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@elizaj and @silviabeatriz– Welcome to Mayo Clinic Connect!

Eliza, how was your bone scan?
Silvia, have you consulted your physician about not taking them?

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@silviabeatriz

Hi. My name is Silvia from Uruguay. I have Been taking anastrozole since 2012. I received Also trastazumab. 18shots and also chemo. The problems associated with anastrozole Must be related with aging. But I cant have a negative control. Pain in joints (knees) but It could be relieved with gym. Running in my case. Hot flushes, problems yo fall to sleep and gaining weight. But what could happened without pills? I dont know

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Hi. I just talked today with her. Two more years after the first 5 years of treatment. By July 2019 the treatment will be finished!! I prefer to keep the treatment for this period and try to make more gymnastic 🙂

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@lexalaska

I hope you are all having better days. I am 65 years old & been on anastrozole for 13 months. I started to experience increased fatigue, insomnia, hot flashes, increased joint pain, depression, thinning hair, & dry skin within the first few months. I had a small lumpectomy in Sep 2016 for pleomorphic LCIS, which is treated as DCIS, but the margins weren't clear enough. My husband passed away Dec 2016 after 3 1/3 years of declining health & becoming an invalid with me as the primary caregiver/health navigator/saddening wife & best friend. I then had a larger lumpectomy with reconstruction in Feb 2017 and concurrently started hormone therapy. Breast reduction of the left breast was done at the same time of the last lumpectomy because the amount of right breast tissue taken was so large, there was gross disparity in size. Due to healing problems with the surgical sites, I couldn't start radiation therapy til Jun 2017. I couldn't discern if the symptoms were grief, hypothyroid, arthritis, fibromyalgia, aging, radiation, &/or anastrozole. I have just developed new onset moderate to severe hand pain within the last month or so. In addition to an active prayer life, I take a medication regimen that keeps me balanced, positive, moving, & functional – antidepressants (Cymbalta, welbutrin), trazodone (sedative to get to sleep), D3, gabapentin, Armour (thyroid), aspirin, Ubiquinol (CoQ10), Aleve, fish oil, joint support formula, & of course, anastrozole. I take other meds for bladder control & GI reflux. I'm counting the months until the 5 years are up to see what all goes away or decreases. In the meantime, I don't want any form of cancer so I will do what the oncologists/surgeons deems most appropriate & tolerate the SE. "May the wind be at your back, the sun in your face, and the love of God in your heart!"

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Just read your post
I am 66 with very thin bones so i will probably do the shots. Did you do this and what ls the cost. Not looking forward to this. I will start on Monday June 4th. Had the surgery and the radiation which I was badly burn and skin breaking down. I know i shd not be concerned with cost but for me i have to be
Thank you

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@leemiller

I’ve been taking anastrozole for almost a year, and am cautiously thinking the side effects have been minimal. My main concern is its contribution to my osteoporosis. I have been seeing an OT to learn how to increase bone mass.

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One year for me too. Somedays are better than others but my goal is to fight recurrence, so I'm in for the long run ~ Hang in there! Thumbs up for the OT for osteoporosis prevention!

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Hi, Tina. I was diagnosed last year with Stage1A, Invasive Ductal Carcinoma, ER+ and HER2+++. Following surgery and three months of Taxol and Herceptin infusions, I was a wreck. Being age 70 probably didn't help. I then chose to discontinue the 9 additional months of Herceptin, and not have radiation. The last recommended treatment was Arimidex (anastrozole). I assessed all the damage from the chemo and targeted immune therapy and decided that i would take half a dose each day and see what the side effects might be. (If, for example, my next bone density test — in about a year — shows significant loss, then I will re-evaluate taking Arimidex for an additional five years or so. If I have a recurrence of breast cancer, then I likely will opt for mastectomy and a full dose of Arimidex, etc.) It's been difficult to tell whether it has made my neuropathy and chemo brain worse or whether they would be this way in any event, but I definitely am experiencing increased arthralgia, and bouts of toe cramps and depression (which is unlike me). As my hair still is growing out following the chemo, it's hard to tell if the Arimidex is messing with that or not. I seem to react negatively to even small doses of medications, so each suggested med. can be a problem.

My oncologist indicated that, if I had trouble with Arimidex, there were others which I could try. If you go to breastcancer.org, you'll find a Hormonal Therapy Side Effects Comparison Chart for seven different aromatase inhibitors (displayed side-by-side). As you can see, none are without potential side effects; not all patients experience the noted side effects; and other side effects can't be ruled out. (You'll note that hair-thinning is not specifically associated with Arimidex.) The trade-off for me is whether the side effects from any AI are preferable to the risks of awakening one day with metastatic cancer.

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@elizm

Hi, Tina. I was diagnosed last year with Stage1A, Invasive Ductal Carcinoma, ER+ and HER2+++. Following surgery and three months of Taxol and Herceptin infusions, I was a wreck. Being age 70 probably didn't help. I then chose to discontinue the 9 additional months of Herceptin, and not have radiation. The last recommended treatment was Arimidex (anastrozole). I assessed all the damage from the chemo and targeted immune therapy and decided that i would take half a dose each day and see what the side effects might be. (If, for example, my next bone density test — in about a year — shows significant loss, then I will re-evaluate taking Arimidex for an additional five years or so. If I have a recurrence of breast cancer, then I likely will opt for mastectomy and a full dose of Arimidex, etc.) It's been difficult to tell whether it has made my neuropathy and chemo brain worse or whether they would be this way in any event, but I definitely am experiencing increased arthralgia, and bouts of toe cramps and depression (which is unlike me). As my hair still is growing out following the chemo, it's hard to tell if the Arimidex is messing with that or not. I seem to react negatively to even small doses of medications, so each suggested med. can be a problem.

My oncologist indicated that, if I had trouble with Arimidex, there were others which I could try. If you go to breastcancer.org, you'll find a Hormonal Therapy Side Effects Comparison Chart for seven different aromatase inhibitors (displayed side-by-side). As you can see, none are without potential side effects; not all patients experience the noted side effects; and other side effects can't be ruled out. (You'll note that hair-thinning is not specifically associated with Arimidex.) The trade-off for me is whether the side effects from any AI are preferable to the risks of awakening one day with metastatic cancer.

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Hi, Elizm ~ I could have been the one to write parts of this letter, with some (minor?) differences! I am 69, diagnosed with 2A BC 12/16, Estrogen progesterin positive, HER negative. One node involved, 16 clear. I had the nodal resection when I decided against chemo! Perhaps if all 16 were positive I would have chosen a different route. My oncologist gave me the statistics and choice about chemo and was OK with my decision. I had radiation and did well with 37 treatments and then began Arimidex on May 20, 2017. There are days when I think I am going to ask for a different drug and then other days I feel fairly good. Depression, arthralgia, joint and bone pain are my biggest problems…Also inability to concentrate. As you pointed out, these symptoms could just have come with our age. I do have pretty constant anxiety over metastisis. When I can get busy doing something I enjoy, I am at my best. I just had my 10 year colonoscopy and the week before, I read many articles about breast cancer and colon cancer connection. All was well, but I think of a wasted week of worry and anxiety. I am working on "mindfulness" but relying on Ativan too. I have come to think that whatever makes my life more pleasant without going overboard is the way I must lead my life. I enjoy eating and the Arimidex has added 10 pounds to my almost "Obese" BMI. Some days I can control my cravings and some days I splurge. SOme days I walk the dog at a brisk pace and some days I don't. At the end of whatever kind of day I have, I look forward to trying harder the next day, but that doesn't always happen! It's beautiful here today (although our area is infested with mosquitoes and if it goes above 80 degrees I sweat exhaustively) ! So ~ You can see it's a challenge to me to rid myself of anxiety. I am thinking of you and our mutual anxiety problem, my friend!

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@mollymiller

Hi, Cindy B~I received your response but it stopped abruptly, in the middle of a sentence, so I am assuming something urgent happened. Or maybe we are getting banned…Or something else not good. While I was sitting here the colonoscopy doctor's office called and left a message for me to call and schedule an appointment. Second call. Still not sure, but I did not know there was a connection between breast and colon cancer. That will hang over me the rest of the day. SO, I await the 2nd part of your post. Molly

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Molly Miller — I apologize for having just now gotten your last post. You've been hanging for my response since April 10 and I sincerely apologize. I don't know what happened with the post and I'm sorry if you didn't get the whole thing. How are you doing? I see you've had your colonoscopy (good for you) and I'm glad all turned out well (?) It looks like it did from your last post. I haven't done that yet (the colonoscopy) but will sometime this year. I've been overwhelmed with my husband's cancer diagnosis. Poor man has had every test they can think of now and they still can't identify the source of his cancer. It's been a mess. I guess it keeps me from worrying about my cancer. I had a little scare with a lump in my right underarm area which they say is fine. I still don't know what that lump is but they don't believe it's cancer. I'll go with that until my next checkup unless the lump changes dramatically. Sometimes we just have to relax and live even though that's difficult when you have cancer and are waiting for the next shoe to drop. Again, sorry for the delay in responding and my post not coming over to you correctly.

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@mollymiller

Hi, Cindy B~I received your response but it stopped abruptly, in the middle of a sentence, so I am assuming something urgent happened. Or maybe we are getting banned…Or something else not good. While I was sitting here the colonoscopy doctor's office called and left a message for me to call and schedule an appointment. Second call. Still not sure, but I did not know there was a connection between breast and colon cancer. That will hang over me the rest of the day. SO, I await the 2nd part of your post. Molly

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Hello, my friend! I am so sorry that your husband is struggling with a cancer diagnosis. It is all I can do to handle my own diagnosis. I have so may ups and downs and for some reason I am now feeling somewhat calm. However, I'm never sure when the very troublesome ups and downs syndromes will strike. Yep, the colonoscopy was negative, thank goodness! I pray for acceptance of what is to be ~ Be well, my friends ~

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@silviabeatriz

Hi. My name is Silvia from Uruguay. I have Been taking anastrozole since 2012. I received Also trastazumab. 18shots and also chemo. The problems associated with anastrozole Must be related with aging. But I cant have a negative control. Pain in joints (knees) but It could be relieved with gym. Running in my case. Hot flushes, problems yo fall to sleep and gaining weight. But what could happened without pills? I dont know

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Hi, Jamie. I had a bone scan about a week or two before I started chemo, and it was above average for my age (and no signs of osteopenia) which I attributed to exercise, and lots of vitamin D. But my body is struggling these days with the considerable nerve damage from the chemo (and subsequent loss of muscle mass), and I don't expect the next bone scan (August of 2019) will be as rosy. I remember too well my mother's spontaneous hip fractures in her eighties and I don't want to repeat that scenario.

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