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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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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@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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Dear Molly. BC at our age is a bear. I haven't been experiencing night sweats or power surges, but I came across something which may be of interest to you. In my case, the chemo-induced neuropathy in my hands, feet and legs has been a nightmare, keeping me up most nights and afternoons with sensory burning. I went to an acupuncturist who also is a doctor of Chinese medicine. My legs and hands were too sensitive for the acupuncture, but he suggested a traditional herbal medication which, for hundreds of years, has been given to women with menopausal symptoms. It is called Zhi Bai Di Huang Wan… little, black herbal pills… I take up to 20/day and they turn my burning appendages icy cold, allowing me to sleep. I would never buy it online as there is no way to know where/how it was sourced, but I trust the doctors of Chinese medicine around here. It also contains no estrogen (an important consideration for those of us on an aromatase inhibitor). In any event, I wonder if it might provide you with some relief from the summer temperatures (you certainly wouldn't need to take as many as I do). In the meantime, I'm rooting for you… we've likely been through rougher times… we'll get through this one!

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Thank you ~ We do have a number of accupuncturists in the area. My oncologist seems to avoid recommended alternative medicine. (She's not the one who prescribes the percodan either.) I am not sure she is as understanding as I would like her to be about my pain and other symptoms. I have a mammogram next week so right now I am focused on that…Mental suffering which can be worse than physical. Thanks for your input. 'So glad that you've found relief!

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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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Thanks for the information , I have had Neuropathy for over 5 yrs , I had just finally got my symptoms under control and had a Routine that made it easy to live with PN ,without taking Pain Meds like Tramadol and Elival at night because all the other Meds. Didn't help ! !!! Then I found the BC lump ! This has been my concern ,chemo bringing the chronic pain and burning all back .My Indocrinologist actually got my burning and pain levels under control by Vitamins B-12 Folbee, E and D 700 and 600 mg once a day ,plus I changed my eating ,mostly veggies and fruit,,,any kind of prepackaged w/ filler foods always made mine worse !! Now with Chemo my Oncologist tells me to stop them because of possible reactions with Treatment !!! It's really strange the Different ways Oncologist treat ,I understand everyone with each case ,but it seems getting all the immune support in your body the better !!! I guess I just think with Logic!!!

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@colleenyoung

Welcome to Connect, @eljayem.
According to this description of anastorzole at Cancer Research UK “tiredness or fatigue happens in up to 2 out of 10 women (20%)”. Read more at http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/anastrozole

Cancer fatigue can be caused by many contributing factors. While you may not of experienced fatigue from surgery, chemo and radiation, I wonder if this is a late side effect from all the treatments compounded by anastrozole. Heck, you’ve just been through the wringer! Post active treatment is a challenging adjustment. Have you considered that post-treatment might be a contributor?

I’m interested in hearing what @floramart @grandma41 @cautiousoptimism @susanao1 @teege1 @leemiller and others who have been there have to say from their experience.

eljayem – have you tried taking the medication at night time?

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For what it's worth, everyone in my cancer support group (there are about 10 of us who continue to meet monthly for lunch) are experiencing fatigue. We're all on either Arimidex or Letrozole, we all were diagnosed last summer, have had varying diagnoses and treatments, are different ages, some work and others don't, we're all frustrated that we're not as quick mentally as we were a year ago… and by ap. 4 p.m., we're exhausted. Those of us who must prepare dinner for others find that the evening is a total loss as our brains simply stop working by then. Considering what we've been through (and some are still receiving treatments), it doesn't surprise us. Our oncologists tell us this reaction is to be expected… regrettably.

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@leemiller

I’m not aware of problematic side effects after a little over a year on anastrozole, except my last DEXA showed a bit more loss of bone mass in my spine. My hair is back, post chemo, sleeping okay, joint pain is from arthritic knees, pain linked to hip weakness. The anastrozole is giving me so little trouble my oncologist is reluctant to try anything else, even with the osteoporosis.

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Glad to hear you are coping well with Arimidex ~ Am I correct in thinking that Arimidex and anastrozole are the same thing? If they aren't…Well, I better re-educate myself.

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