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?

I have been taking anastrozole since Sept 2016. I started right after I finished my radiation treatments. At first I was very tired all the time, not sleeping well, and my bones and joints hurt a lot. I was also emotional and depressed. In December, I saw my nurse oncologist and she told me to take 2 tablets of glucosamine/chondroitin (1500 mg) each day and an Aleve PM ( 1or 2 Tabs) each night to sleep better. I have only been using 1 Aleve PM each night and I really sleep good. My bone pain went away immediately and most of my other symptoms also disappeared. It was like a miracle. I could tell the difference in 24 hours. I haven’t noticed any hair loss and I also take magnesium 1200 mg a day, a vitamin D, and Calcium. My cancer was ILC , stage 1, and I had a lumpectomy, and radiation. Doing well now except for some fluid build up in breast. Wearing a sports bra helps a lot.

Thank you so much!! I am going to try (as I call them my ‘icky pills’) again shortly and I will try this suggestion as well. I take the same supplements you do (and a few others) and will try adding the Glucosamine/chondroitin and Aleve. Glad it worked for you, hope it will do the same for me. Appreciate your reply and I hope to stay in touch with you on this site since our cancers are both ILC, stage one. It’s nice to find a fellow ILC person (there aren’t as many of us) !

@cindylb

I’ve just now found this group and have joined. I am one year into my ‘adventure’ with breast cancer (lobular stage 1). I chose a bi lateral mastectomy and luckily my cancer had not spread to my lymph nodes. I thought I would be ‘done’, given my aggressive choice to remove my breasts and felt lucky I had caught it fairly early, but my oncologists say I should use the follow up drugs. I have tried both Letrozole and Arimidex so far and both have made me very ill. Of course I don’t want the cancer back (I have a 15% chance, which is pretty low) but I also find it impossible to tolerate these drugs. My side effects have ranged from severe depression, joint pain, blood in my stools and Shingles (twice….on my butt of all places, ouch). I am considering trying the Letrozole again but I’m having a hard time facing the side effects. I have hormone difficulties and have my whole life. These drugs just seem to throw me back into the horrors I experienced with menopause and more. I’m happy to have found a support group (that’s a big missing piece for me in my recovery) and hope someone might have some similar experiences or thoughts on how I can reconcile two seemingly bad options as I move forward?

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Wow! Talk about being between a rock and a hard place! I had some of those side effects as well, but NOTHING like the ones you are having. Still I couldn’t stand them and tried about 3 other drugs until I got on anastrozole. It has side effects but much milder, at least for me. I don’t know who your docs are or where you are getting treated but you could also consider a 3rd opinion.

But honestly, if I were you, with the miserable quality of life you seem to be having, Stage I, bi-lateral mastectomy and no lymph node involvement ( although you didn’t mention your HER-2 neu status or your estrogen sensitivity, which need to be considered) I would SERIOUSLY be thinking about chucking the post-hormone tx and taking my chances.

If your quality of life sucks, what’s the point? That however, is a decision only YOU can make, and I myself wouldn’t make it without talking to my docs about it first.

I’ve had TWO different types of breast cancer: triple negative, stage I in the L breast, the first time around – 11 years out on that one, and ER+, stage 1b in my other breast – 3 years out on that one. No lymph node involvement either time. Before I started anastrozole the side effects of the other drugs, even though no where near as bad as yours seem to be, were bad enough that I told my doc at Mayo that if there wasn’t something else I could take my quality of life was bad enough that I wanted to consider skipping oral chemo and taking my chances (my chances of recurrence were also 15%).

Luckily we found something that worked better. I TOTALLY get where you are coming from. You are having to make a decision with incomplete information. There are NO easy answers here. I would just say, go with your gut.

Berit

@cindylb

I’ve just now found this group and have joined. I am one year into my ‘adventure’ with breast cancer (lobular stage 1). I chose a bi lateral mastectomy and luckily my cancer had not spread to my lymph nodes. I thought I would be ‘done’, given my aggressive choice to remove my breasts and felt lucky I had caught it fairly early, but my oncologists say I should use the follow up drugs. I have tried both Letrozole and Arimidex so far and both have made me very ill. Of course I don’t want the cancer back (I have a 15% chance, which is pretty low) but I also find it impossible to tolerate these drugs. My side effects have ranged from severe depression, joint pain, blood in my stools and Shingles (twice….on my butt of all places, ouch). I am considering trying the Letrozole again but I’m having a hard time facing the side effects. I have hormone difficulties and have my whole life. These drugs just seem to throw me back into the horrors I experienced with menopause and more. I’m happy to have found a support group (that’s a big missing piece for me in my recovery) and hope someone might have some similar experiences or thoughts on how I can reconcile two seemingly bad options as I move forward?

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Thank you so much for your reply. This support has already been so helpful. My Lobular Breast Cancer is highly ER+ (90%), so there’s the culprit, therefore the drugs would be a great addition, if they didn’t make me so sick. I’m a year in and I still haven’t taken these drugs (the Letrozole and Arimidex) for more than 8 weeks total over a course of the year because of all of the side effects. I agree that quality of life is important and that’s why I’m on the fence about this. My risk of recurrence is low but it’s never low enough not to worry I guess, but on the other hand I’m concerned about missing the cancer if it comes back and having bigger troubles. My doctors aren’t pushing the drugs strongly but I’m still trying to be a super-achiever I guess and do all I can. Being sick with all of these other issues due to the drugs has made this a very long year, too long.

I have been on arimidex now for almost two years now…wad on tamoxifen for a year before my Onc switched me. As of lately…six months really bad joint pain and my hair has started thinning so bad I’m considering a really short boy haircut

@mrob69

I have been on arimidex now for almost two years now…wad on tamoxifen for a year before my Onc switched me. As of lately…six months really bad joint pain and my hair has started thinning so bad I’m considering a really short boy haircut

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It’s such a difficult situation. The treatment to keep up from recurrence can have so many negative side effects. I’m still on the fence about what to do. I’ve tried two of the three medications and both have given me pretty much every side effect. I’m hopeful they’ll come up with more solutions soon. I just read and saved a study that the aromatase inhibitor drugs can cause serious blood vessel damage. It was a very small study and only one but the study concluded that the drugs can raise heart attack risk so that you are actually more likely to die from a heart attack than the cancer (that the drugs pretty successfully block). What to do? I’ll probably fritter along long enough that my cancer will recur while I’m deciding. Thank you for your reply and input on this. Hang in there everyone!

My hair is thinning (age or drugs or both?) I was using a shampoo with biotene (organic). Seems to be working OK but I am looking for suggestions. We try to stay organic if possible. Thanks.

So, did you not have these side effects when you first started taking the arimidex ? I started taking it about 4 months ago and had bad joint and bone pain but when the oncology nurse told me to take glucosomine & chondroitin , that helped the very next day. I’m just wondering if side effects can show up at any time while we are being treated with this or if gradually our bodies adjust. It kind of scares me when I read that it can damage the heart.

The study I saw about the blood vessel and heart damage was small (about 60 women, with breast cancer, half on Arimidex, half not). They showed that the use of the Arimidex may accelerate blood vessel and heart damage. The women who did not take the pills didn’t have as much heart damage or heart attacks but then………estrogen safeguards bones, the heart and keeps our hair from falling out of our heads 🙂 I lost a lot of hair when I went through menopause (about half of my hair and it never came back). Maybe if that hasn’t happened yet maybe the hair loss is more extreme and happens more quickly on these drugs? I don’t know of any organic shampoos or conditioners that will help it grow back or look fuller. I use a shampoo that’s not organic but ‘less chemically damaging’ to create fuller looking hair. I am considering hormone tests to give me a starting point for my estrogen and then trying to get my estrogen levels lower naturally with diet and supplements (I’m working on that now but don’t have the testing to see if it’s working). Also, I wonder if that’s enough or if the drugs are doing other things that help keep recurrence down? I’m seeing my oncologist this month and will be talking with her about this. A naturopath might be a good place to do some research. I have one but may be shopping around a bit. I hope the medical community figures out hormone balancing naturally soon! 🙂

As I read the lists of side effects so many people have with Anastrozole, I realize how lucky I’ve been. The only issue I’m aware of concerns my osteoporosis.

@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 have DCIS and had a lumpectomy and radiation. The oncologist suggested anastrozole (Arimidex) and after reading all of the people’s issues, your post is heartening. Since it has been almost two years since you have been taking this, how are you feeling now? Any tips before I start taking this? Have you helped your bone loss in some way? I am not a smoker, only take vitamins, rarely drink, eat healthy, work fulltime and very active. Bone soreness is something I can handle, bone loss is concerning. Any helpful advice is appreciated!

@leemiller

As I read the lists of side effects so many people have with Anastrozole, I realize how lucky I’ve been. The only issue I’m aware of concerns my osteoporosis.

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When I was diagnosed with metastatic breast cancer almost 4 years ago a bone scan showed that the cancer was definitely in my bones. My oncologist started me immediately on a once monthly shot of xgeva. My current bone scans have shown significant improvement in my bones. I am now on a quarterly shot of xgeva. It is very expensive (about $2,000 per shot) but my secondary insurance and medicare cover the cost. I also eat a Tums daily along with several vitamin pills. I was on arimidex for 3 years but it quit working for me so I am now on a monthly shot of faslodex. It seems to be doing the job. Some hair thinning seems to be my main symptom – I have started using a hair thickening shampoo. I have some bone and joint pain but take two Advil pills a day. So far, so good. Best wishes.

Hi i am a new member and have just been taken off Anastrazole took it for one yr. to my knowledge had no side affects, however it did not shrink the tumor in my brst thus the Dr. is putting me on Ibrance which i have not rec.d yet as it is mailed to my Pharmacy. i am losing hair however this could be due to my age as i am in mid 70’s. feel fine so far plus take Flavadex and Xgeva injections as well for the tumor. hopefully this will help you as far as Anastrazole, i waited to long in going to a Canc Dr. and the tumor had already advanced in size, i certainly would not have waited as long as i did to take care of this, thought i was healing it through natural means.

Hello @starrlight,

I’m so sorry to learn about your condition, but glad that you’ve come to Connect. Thank you so much for sharing your history; I know that your insight is much appreciated.

According to Mayo Clinic, metastasized cancers can become resistant to hormone-blocking therapies, and Ibrance (Palbociclib) is one of a new group of medications that can be added to make the cancer cells respond to hormone treatments. You can read more about it here: http://mayocl.in/2kV4c4g
Xgeva (Denosumab) injection is used to treat bone loss in women with breast cancer who are receiving cancer treatment: http://mayocl.in/2l6zqaz

@wandering, you have spoken in some detail about Xgeva and Faslodex; do you have any advice or suggestions?

@kanaazpereira

Hello @starrlight,

I’m so sorry to learn about your condition, but glad that you’ve come to Connect. Thank you so much for sharing your history; I know that your insight is much appreciated.

According to Mayo Clinic, metastasized cancers can become resistant to hormone-blocking therapies, and Ibrance (Palbociclib) is one of a new group of medications that can be added to make the cancer cells respond to hormone treatments. You can read more about it here: http://mayocl.in/2kV4c4g
Xgeva (Denosumab) injection is used to treat bone loss in women with breast cancer who are receiving cancer treatment: http://mayocl.in/2l6zqaz

@wandering, you have spoken in some detail about Xgeva and Faslodex; do you have any advice or suggestions?

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Yes, I have posted about Xgeva and Faslodex but here goes. I starting getting Xgeva injections when I was first diagnosed in September 2013. The goal of this drug is to halt bone loss caused by the metastatic breast cancer. I believe my bone scans show that this has happened and much of the cancer in my bones has gone away. While I was in jeopardy of broken bones when first diagnosed, I think the Xgeva has stopped this. I was on a once monthly injection for about two years and get an injection every three months. Faslodex: When first diagnosed, I was not on Faslodex but Arimidex. When the Arimidex stopped working (shown by a drastic increase in my tumor markers – CA 27-29) my oncologist started me on a monthly injection of Faslodex. The CA 27-29 was 225 in June 2016 and has gone down monthly to 69.9. While I do not enjoy the Faslodex injections (two large needles) I do like the results. The plan is to stay on this until it stops working. I think I have been pretty fortunate – I have had very few bad side effects from any of the drugs I have been on since diagnosed. My hair does seem to be thinning – not sure if that is age (72), heredity or drugs. I can live with that. Hope this gives you some insight.

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