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?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Profile picture for Colleen Young, Connect Director @colleenyoung

Hi @tinalove, welcome to Connect.
You'll notice that I moved your message into the Breast Cancer group.

Anastrozole belongs to a class of drugs called aromatase inhibitors. You can find out more about them and what to expect here http://www.mayoclinic.org/tests-procedures/hormone-therapy-for-breast-cancer/basics/what-you-can-expect/prc-20015050 On the list of side effects of anastozole, hair loss is listed as an uncommon side effect.

It would be nice to get a first-hand experience for someone who has taken hormone therapy. I'm tagging @luladavis @maureenkarras and @lecase to see if they will join this discussion.

Maureen wrote a while back about side effects of exemestane, one of the other aromatase inhibitors and Lecase asked about the pros and cons of anastrozole and tamoxifen. https://connect.mayoclinic.org/discussion/can-anyone-speak-to-the-proscons-of-arimidex-vs-tomoxifen-ive-been-on/

Tina, what kind of breast cancer did you have and what treatments? How are you doing?

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I just joined this group to check out others experiences with Anastrozole. I recently (Nov 6) had a lumpectomy (stage 1 DCIS) with a very tiny "micro invasion". My tumor would have been Stage 0 if there had not been any micro invasion. No radiation but a prescription for Anastrozole. I am 79 yrs old and also have Multiple Myeloma which has been treated successfully for the last 3 years. I will have infusions of Darzalex for the rest of my life - now only 1 x a month. After reading all of the horrible side effects and talking to other survivors I have decided to take my chances and hopefully live a life of some quality. My bones have thinned from the myeloma and the thought of further thinning is very frightening. I had to have some chemo for the myeloma and it gave me neuropathy which is in itself very painful and makes me "wobbly" (I have to use a cane.) I plan to talk to my Oncologist next week about this and hopefully she can help me with diet, exercise and weight control so that any cancer recurrence would be minimized if it came back at all. I would just like to live the rest of my life without everything that goes with this drug. Has anyone else taken this path and is doing well?

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Profile picture for Lisa Lucier, Moderator @lisalucier

Hello, @susiebeard, and welcome to Mayo Clinic Connect. Since you mentioned increasing symptoms of arthritis and bone pain in your hands and feet since initiating anastrazole treatment, I've moved your post here to this discussion, "Concerned about the side effects of anastrozole," so that you can talk with others who are in or have been in a similar therapy and may have some thoughts to share, especially about the symptoms you described.

If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Wondering what your oncologist has said about a connection between the arthritis and bone pain and the anastrazole? Has any treatment for these symptoms been prescribed?

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My oncologist doesn't say the symptoms are directly related to the Anastrazole, but he also doesn't discount my complaints. Treatment for me would be difficult as I have issues with my kidneys and any NSAID or steroid sends them into a downward spiral! I see the oncologist later in January and I intend to bring up this issue. It has become a matter of "quality of life" for me. At age "almost 75" I am wondering if I would be better off dcing this medication.

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Profile picture for marybe @marybe

Background-I was diagnosed with Stage IIIB ER+, PR+, HER2+ ductal and lobular cancer last June. I was put on a clinical trial which includes taking anestrozole for 6 months and then surgery. Although my K2 numbers last September showed the anestrozole was ‘activating’ the cancer cells, the tumor neither diminished nor grew. It’s still at 9cm. The first two months of taking it were rough, but after that I adjusted to it and now I sometimes wonder if I’m taking a placebo. The only side effects are some irrational emotions and fatigue, both which could be attributed to just having cancer. Im having a double mastectomy with two different surgeries, the first one on the 23 of this month. After that I’ll go back on the anestrozole

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@marybe
You're a strong, positive soul and we're all rooting for you! Go get 'em, Mary!

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Background-I was diagnosed with Stage IIIB ER+, PR+, HER2+ ductal and lobular cancer last June. I was put on a clinical trial which includes taking anestrozole for 6 months and then surgery. Although my K2 numbers last September showed the anestrozole was ‘activating’ the cancer cells, the tumor neither diminished nor grew. It’s still at 9cm. The first two months of taking it were rough, but after that I adjusted to it and now I sometimes wonder if I’m taking a placebo. The only side effects are some irrational emotions and fatigue, both which could be attributed to just having cancer. Im having a double mastectomy with two different surgeries, the first one on the 23 of this month. After that I’ll go back on the anestrozole

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Profile picture for susiebeard @susiebeard

I have been on Anastrazole for 3 years following mastectomy for grade 1 invasive lobular cancer of the left breast. No radiation or chemotherapy were used. Lymph nodes were negative for involvement. Since initiating treatment with the Anastrozole, I have experienced increasing symptoms of arthritis and bone pain in my hands and feet. Currently, the pain in my feet is causing me to limp significantly. Has anyone else experienced these symptoms?

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Hello, @susiebeard, and welcome to Mayo Clinic Connect. Since you mentioned increasing symptoms of arthritis and bone pain in your hands and feet since initiating anastrazole treatment, I've moved your post here to this discussion, "Concerned about the side effects of anastrozole," so that you can talk with others who are in or have been in a similar therapy and may have some thoughts to share, especially about the symptoms you described.

If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Wondering what your oncologist has said about a connection between the arthritis and bone pain and the anastrazole? Has any treatment for these symptoms been prescribed?

REPLY

I have been on Anastrazole for 3 years following mastectomy for grade 1 invasive lobular cancer of the left breast. No radiation or chemotherapy were used. Lymph nodes were negative for involvement. Since initiating treatment with the Anastrozole, I have experienced increasing symptoms of arthritis and bone pain in my hands and feet. Currently, the pain in my feet is causing me to limp significantly. Has anyone else experienced these symptoms?

REPLY
Profile picture for tessfair1 @tessfair1

Hi. I started on Anastrozole in early October. By mid-November, my joint pain was so bad that I dreaded going from sites to standing position or having to squat down for any reason. My doctor put me on a “drug holiday” - not as fun as it sounds lol -where I did not take the drug for 3 weeks. I went back on the drug on Dec 11 and so far have had minimal side effects. My oncology team does not know why this works, but have found that often after taking a break from the drug, the side effects are lessened once back on. I am 47 years old and stage 3, so feel that not taking an AI is not an option for me. So, if your pain gets to the point that you feel you can’t endure be sure to talk with your medical team about the possible benefits of a drug holiday. It just might work for you, too! I’m also curious about the 10 yr expectation of you taking the drug as I was informed (and the little bit of research I’ve done seems to support) that there is no added benefit to 10 yrs vs 5 yrs of AI. If anyone has other info, I’d love to hear it. Thanks. And we are all so much stronger than we think we are! Hang in there, all!

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@tessfair1 @ljwright4778
I had a lot of arthralgia last year during chemo (probably from the Herceptin) and consequently was not excited about taking the anastrozole this year. I looked at the research which is complex: most patients discontinue anastrozole (and other AIs) within the first two years because of the side effects; there appears to be a spike of BC recurrence following discontinuance after 5 years; AIs do prevent recurrence while taking them; older and younger patients are more susceptible to recurrence in general, etc.) Although I was stage 1, the tumor was grade 2, ER+ and HER2+. Taking into account that I am super-sensitive to most medications and age 71, I decided to take half an Anastrozole daily (500 mcg).

No, my oncologist was not thrilled, but when I reminded him that most discontinue AIs within the first two years, and that this decision might allow me to continue for the 5-7 years recommended, he conceded. Yes, the arthralgia has continued despite the low dose, but I'm focused on the long-term. I also exercise 4-5 hours/week which I believe helps prevent bone loss and insomnia, AND, with my GP's approval, have taken a holiday from my statin (which began giving me a number of indiscriminate muscle pains, despite taking Co-Q-10).

There isn't much of a win-win when you analyze all the factors. I suggest that you do the research and list all the pros and cons for your particular situation, understand that you do have choices (like switching to a different AI, halving the dose, and taking none at all), and then you'll have a clearer picture of the trade-offs for your particular situation. We're all rooting for your long-term wellness!

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Profile picture for tessfair1 @tessfair1

Hi. I started on Anastrozole in early October. By mid-November, my joint pain was so bad that I dreaded going from sites to standing position or having to squat down for any reason. My doctor put me on a “drug holiday” - not as fun as it sounds lol -where I did not take the drug for 3 weeks. I went back on the drug on Dec 11 and so far have had minimal side effects. My oncology team does not know why this works, but have found that often after taking a break from the drug, the side effects are lessened once back on. I am 47 years old and stage 3, so feel that not taking an AI is not an option for me. So, if your pain gets to the point that you feel you can’t endure be sure to talk with your medical team about the possible benefits of a drug holiday. It just might work for you, too! I’m also curious about the 10 yr expectation of you taking the drug as I was informed (and the little bit of research I’ve done seems to support) that there is no added benefit to 10 yrs vs 5 yrs of AI. If anyone has other info, I’d love to hear it. Thanks. And we are all so much stronger than we think we are! Hang in there, all!

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Wow, you hang in there! I am stage 1A and 64 and could not stand the side effects! I tried it 3 different times and each time the effects worsened. I have more of a choice than you! I was told anywhere from 3-10 years to take. But again I am at 3-10% recurrence and my age and 4grandsons, I do not want to be a sedentary Grammy! Keep it up, Girl!

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Profile picture for ljwright4778 @ljwright4778

I have just started Arimadex and wanted to hear from others taking this drug. My Dr. said I will be taking this pill for the next 10 years. He stated that I will have joint pain in my hands and wrists. I experienced that immediately! I take it at night because I feel into a deep, deep sleep about 3 hours after taking it. I am a school teacher and really do not need to be falling asleep with students!

I feel depressed and unmotivated, my joints ache all the time. I am taking calcium with a Vit D supplement. My knee was hurting from laying on the radiation table and it hasn't gotten better. Here are my questions, does the joint ache go away with exercise? I used to play tennis and I still play the piano and I REALLY do not want to lose any of these activities. I am starting to get out on the courts but when I get home, my body is so sore, I can't move.

I am thinking about taking the pill part time but when I didn't take it for Christmas, it seemed like the joint pain was WORSE! So my questions are:
Do you take ibuprofen to help the achy joints or another supplement?
Do you find that taking the pill at night that you still are restless and mornings are very hard to get out of bed?
Does exercise help relieve the joint pain? I know it will help the bone loss!
What essential oils does anyone take to help with these side effects?

I know these questions are numerous and a little disjointed but this is what is on my mind! The pain in my body makes me feel like I am 80 and not 60, sad and not happy like I normal and have a very short fuse!

Thank for your input!

Jump to this post

Hi. I started on Anastrozole in early October. By mid-November, my joint pain was so bad that I dreaded going from sites to standing position or having to squat down for any reason. My doctor put me on a “drug holiday” - not as fun as it sounds lol -where I did not take the drug for 3 weeks. I went back on the drug on Dec 11 and so far have had minimal side effects. My oncology team does not know why this works, but have found that often after taking a break from the drug, the side effects are lessened once back on. I am 47 years old and stage 3, so feel that not taking an AI is not an option for me. So, if your pain gets to the point that you feel you can’t endure be sure to talk with your medical team about the possible benefits of a drug holiday. It just might work for you, too! I’m also curious about the 10 yr expectation of you taking the drug as I was informed (and the little bit of research I’ve done seems to support) that there is no added benefit to 10 yrs vs 5 yrs of AI. If anyone has other info, I’d love to hear it. Thanks. And we are all so much stronger than we think we are! Hang in there, all!

REPLY
Profile picture for ljwright4778 @ljwright4778

I have just started Arimadex and wanted to hear from others taking this drug. My Dr. said I will be taking this pill for the next 10 years. He stated that I will have joint pain in my hands and wrists. I experienced that immediately! I take it at night because I feel into a deep, deep sleep about 3 hours after taking it. I am a school teacher and really do not need to be falling asleep with students!

I feel depressed and unmotivated, my joints ache all the time. I am taking calcium with a Vit D supplement. My knee was hurting from laying on the radiation table and it hasn't gotten better. Here are my questions, does the joint ache go away with exercise? I used to play tennis and I still play the piano and I REALLY do not want to lose any of these activities. I am starting to get out on the courts but when I get home, my body is so sore, I can't move.

I am thinking about taking the pill part time but when I didn't take it for Christmas, it seemed like the joint pain was WORSE! So my questions are:
Do you take ibuprofen to help the achy joints or another supplement?
Do you find that taking the pill at night that you still are restless and mornings are very hard to get out of bed?
Does exercise help relieve the joint pain? I know it will help the bone loss!
What essential oils does anyone take to help with these side effects?

I know these questions are numerous and a little disjointed but this is what is on my mind! The pain in my body makes me feel like I am 80 and not 60, sad and not happy like I normal and have a very short fuse!

Thank for your input!

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Hi @ljwright4778,

I moved your posts to this discussion on Anastrozole (Arimidex) so that you could reconnect with the members who've joined this discussion. I’m so glad you’ve reached out to the Connect community with your questions, and I’m confident fellow members will join in and share their insights.

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