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.

@songsparrow

My main concern with all of these aromatase inhibitors is the long term effects for overall health. Research shows there are known deleterious effects of estrogen deprivation in healthy women under 50, accelerating the development of age-related diseases. According to the study, these women were not on AIs, but underwent bilateral oophorectomy. Currently age 49 and having been on anastrozole for a year, I have to wonder if it's the best long term health care decision for what I was told was a very common cancer that was caught very early.

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@songsparrow if your risk is very low, it is a reasonable thing to research and figure out. For me, the risk of dying of cancer overrode any long term effects. We are all different.

Forums emphasize side effects and more people seem to post either with side effects or with a decision not to take meds. I only post with my own situation but in my experience with family and friends, they all take the meds and don't suffer too badly.

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Anastrazole????. Hi, I am new to this site. I had stage one breast cancer. A lumpectomy removed all of it and they did not find it in my lymph nodes. I had only 10 radiation sessions. Then they put me on letrizole. I was coping well with the letrizole until I started itching. The rash areas increased. So after being on it about 9 months I was taken off of it. I am entering my 4th week off of it. Next week I will start anastrozole. I was told that I might also have the itching with that. So I’m worried. What bothers me even more is the possibility of having stage one alopecia. My hair is good, thick, and long. I don’t want to lose it and I’m worried about anaphylactic reactions. I wonder if they can give me an epi pen of which I know nothing. I had only a 3% chance of the cancer returning. Gee there doesnt seem to be many good choices. I used a skin cream prescribed by my GP prior to seeing my cancer specialist. Since it is probably a cortisone and anti fungal product I guess it’s not a good alternative to staying on letrizole. I didn’t sleep well with letrizole but without my allergic reaction it doesn’t seem as extreme as anastrzole. Does anyone have knowledge or experience. I don’t want to have raggedy hair.

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@leafly

Anastrazole????. Hi, I am new to this site. I had stage one breast cancer. A lumpectomy removed all of it and they did not find it in my lymph nodes. I had only 10 radiation sessions. Then they put me on letrizole. I was coping well with the letrizole until I started itching. The rash areas increased. So after being on it about 9 months I was taken off of it. I am entering my 4th week off of it. Next week I will start anastrozole. I was told that I might also have the itching with that. So I’m worried. What bothers me even more is the possibility of having stage one alopecia. My hair is good, thick, and long. I don’t want to lose it and I’m worried about anaphylactic reactions. I wonder if they can give me an epi pen of which I know nothing. I had only a 3% chance of the cancer returning. Gee there doesnt seem to be many good choices. I used a skin cream prescribed by my GP prior to seeing my cancer specialist. Since it is probably a cortisone and anti fungal product I guess it’s not a good alternative to staying on letrizole. I didn’t sleep well with letrizole but without my allergic reaction it doesn’t seem as extreme as anastrzole. Does anyone have knowledge or experience. I don’t want to have raggedy hair.

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If you cannot do any aromatase inhibitors, would you consider tamoxifen? Good to read that your risk is low, but is that with assumed hormonal therapy?

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@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 https://connect.mayoclinic.org/discussion/dry-skin-red-itching-burning-and-peeling/ 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 had Hr2+ (ductal) breast cancer stage 1 ( aggressive type) As a precaution of cancer spreading a few nodes were taken out under my armpit. I was on Herceptin (tolerable) and radiation. Lost all my hair 👩🏻‍🦲 but bought a wig that I wore. I would not sleep without covering my head( kerchief )at night I couldn’t get use to being bald. But.. I thought if I’m losing my hair then my therapy is working and killing my cancer.!💪🏼 Having (Her2+ Hr-) I was put on Anastrozole (5 yrs) to block estrogen. I had no side side effects and relieved knowing it was blocking the estrogen that caused my cancer. I have been off Anastrozole now (6 yrs) my hair has grown back. I was told I no longer needed to continue taking it BUT it scared me! I was losing my safety net I was afraid of cancer coming back. But now 6 yrs later I’ve been fine🤞In the end it’s all worth going through all the highs and lows knowing there was a light after my tunnel 👍🫶

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@teege1

On Feb 2, 2016 I was diagnosed with IDC, Mucinous type. I had 2 separate tumors in the right breast. I elected for bilateral mastectomy with natural reconstruction, a tough but very satisfying route. I was then prescribed Arimidex. I took it for about 4 months and had multiple side effects that were intolerable: severe insomnia, severe mood swings, depression to mention a few. As a result, I was prescribed sleeping pills and anti-depressants. I finally said this is crazy and my oncologist took me off the Arimidex and put me on Femora. I also stopped the antidepressants and sleeping pills! I took 2 Femora pills, 1 each day, and had the worst diarrhea I have ever had in my life that lasted a week with stomach upset for a month. That ended that. I am now on Aromasin. I started with 1/2 tablet for a month. I will now add a whole tablet every other day for a month. Pending my reaction, I will then move to the prescribed daily pill, taken in the AM with a full breakfast. If this does not work, I will go back to 1/2 tablet and stay on that for 5 years!

I am very concerned about several things. First, the protocol is for women to take the prescribed dose-1 tablet on any of the three aromatase inhibitors daily for 5 years. It does not take into account if you are 5'2" or 6'2" tall. It does not take into account if you are 120 lbs or 350 lbs. It does not take into account if you are Caucasian, African American, Asian, Native American or from Mars. It does not take into account if you are 25, 55, or 75. It is a one size fits all protocol and my oncologist is not very sympathetic about me altering the dose.

I am one of the most blessed women alive. I did not have to have chemo or radiation. I could have had a double lumpectomy as my breast surgeon said given what I have and my age, (slow growing, rare-2%, that strikes women 68-72 usually BRCA negative), with radiation and be fine. I could have had the right breast removed and left it at that. I was quite large breasted so didn't like that option. I had 2 breast biopsies a week apart, a third biopsy the next week on my hip (negative for anything) and a sentinel node biopsy the forth week. I was done. I elected to have bilateral mastectomy as I knew I was never going through this again. If anyone is interested in knowing what "natural reconstruction" is, I am willing to tell you.

My whole point is that these protocols need to be worked out with your medical team and you need to be in charge of our own health. I found an exceptional book that helped me through my decision making and can't imagine doing this without it. It empowered me to decide and keep deciding based on my body and how I physically reacted to all of this.

Blessings to you all on this horrible psychedelic trip God is good and is holding my hand every step of the way.

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I would appreciate knowing which book. Just diagnosed this week with mucinous breast cancer, likely pure type.

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@leafly

Anastrazole????. Hi, I am new to this site. I had stage one breast cancer. A lumpectomy removed all of it and they did not find it in my lymph nodes. I had only 10 radiation sessions. Then they put me on letrizole. I was coping well with the letrizole until I started itching. The rash areas increased. So after being on it about 9 months I was taken off of it. I am entering my 4th week off of it. Next week I will start anastrozole. I was told that I might also have the itching with that. So I’m worried. What bothers me even more is the possibility of having stage one alopecia. My hair is good, thick, and long. I don’t want to lose it and I’m worried about anaphylactic reactions. I wonder if they can give me an epi pen of which I know nothing. I had only a 3% chance of the cancer returning. Gee there doesnt seem to be many good choices. I used a skin cream prescribed by my GP prior to seeing my cancer specialist. Since it is probably a cortisone and anti fungal product I guess it’s not a good alternative to staying on letrizole. I didn’t sleep well with letrizole but without my allergic reaction it doesn’t seem as extreme as anastrzole. Does anyone have knowledge or experience. I don’t want to have raggedy hair.

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I am in year 2 of 5 years enduring Anastrozole. There are side effects but they seem to be very varied. Mine didn’t manifest until the second year

As I have written before - my greatest frustration was understanding, discussing and finding possibilities for dealing with side effects. There is no one size fits all here. Each side effects requires its own attention. AND it rarely involved Tylenol and Bengay but hallelujah if that worked. I worked my own issues out when assistance from those prescribing Anastrozole left me paddling my own canoe.
One by one with research and forums such as this I was able to address most of my issues. I wanted to hopefully keep this option for the 5 years prescribed and I will continue to work on that

If there is a fly in this prescribed AI ointment it might not be the chemistry of this pill, but rather in the emotional understanding of how this will effect the person taking it! The prescribers become a gateway side effect when the value of what they are offering as extensions of our life as a whole must encompass our daily life as we live it day-to-day.
Ever onward!!

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@ginip

I am in year 2 of 5 years enduring Anastrozole. There are side effects but they seem to be very varied. Mine didn’t manifest until the second year

As I have written before - my greatest frustration was understanding, discussing and finding possibilities for dealing with side effects. There is no one size fits all here. Each side effects requires its own attention. AND it rarely involved Tylenol and Bengay but hallelujah if that worked. I worked my own issues out when assistance from those prescribing Anastrozole left me paddling my own canoe.
One by one with research and forums such as this I was able to address most of my issues. I wanted to hopefully keep this option for the 5 years prescribed and I will continue to work on that

If there is a fly in this prescribed AI ointment it might not be the chemistry of this pill, but rather in the emotional understanding of how this will effect the person taking it! The prescribers become a gateway side effect when the value of what they are offering as extensions of our life as a whole must encompass our daily life as we live it day-to-day.
Ever onward!!

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Keep on Keeping on. I, like you was on Anastrozole and I took for 2 1/2 yrs. Like you, the doctors prescribing the meds just leave you paddling your own canoe. (I love that analogy) I did ‘OK’ for 2 years, ignoring side effects and trying everything to feel better and not have hip pain. I felt 80 yrs old and I’m not That Old. 🤣. O couldn’t get in & out of the car without help. I stopped the med. It took about 5 months for me for me to get to feeling like my energetic self w/o a fog over my entire body. I did 2 1/2 yrs of meds. Better than nothing. I pray you can continue w/ med, it may be helpful. Many women are able to finish out the 5 years. Blessings to them and actually to all of us! Positive vibes to 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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I was on Anastrazole for
5 yrs I never found a problem with side effects because of memory issues I was taken off it ( usually after 5 yrs normally taken off )

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I was extremely worried and stressed about taking AI’s as I am sensitive and reactive to medication. But I was more worried about breast cancer!

I am at just about one year on Anastrozole. I’ve had mild side effects like joint stiffness ( especially my hips) that I work out by movement like walking, hiking and yoga . My bigger concerns were the unseen side effects of heightened cholesterol and/or bone loss . So I decided to pay for my own DEXA at one year ( my insurance allows every 2years ) to stay on top of any problems brewing. My bone density has remained completely steady at year one ( a .1 decrease in one hip and a .1 increase in the other). Spine lost .1 at L4. Also my already somewhat elevated cholesterol has remained steady.

I have engaged in mitigation strategies of diet and exercise as well as supplements D3, K2, and food based calcium AND have reduced red meat to 1-2 times a month. Almost zero processed food… which is loaded with salt ( a bone killer) .

There are some things we can do to mitigate. Now I can take the Anastrozole in peace each night… and keep on mitigating!

So, for those who are concerned about side effects … you don’t know if you will have them until you test it out. Many women don’t have difficulties on these meds. As a daily pill, with a 50 hour half life, you can always stop.

So if your doc feels that it would be beneficial for you to be on an aromatase inhibitor it’s because the main side effect is to reduce the incidence of breast cancer. I suggest you give it a try before rejecting it outright; it just might really be OK for you. I hope it is!

Blessings on the journey 🌸

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I agree 100% to your comments. I actually stayed on it for 6 yrs and had to get off it ( not recommended after 5 yrs) I felt a little afraid getting off of it. I felt it was my protection net against blocking my estrogen levels. My doctor did say being on it for as long as was, I’m still well protected for years coming.
My feelings are if it helps ward off the culprit causing the cancer it’s well worth trying anything that gave me some hope. There’s been a lot of us who have been through it ( or going thru it) all with different symptoms but……
If it’s going to help suppress your cancer, I feel it’s worth the risk taking and dealing with the side effects that aren’t causing you more distress 👍
Hang in there!💪🏼

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