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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heydon2023 | @heydon2023 | May 8, 2023

In reply to @omer "This is helpful information. I have most of the side effects and have been managing as..." + (show)

I'm not sure how long the side effects take to ease off, but I think it's a couple of months. I did read an interesting article where a doctor told his patient to start the Arimidex for three days a week, to get her body used to it and to add more days as time went on. As you have only 8 months to go, perhaps you could do it in the reverse? Ask your doctor if you could drop one pill per month, (say Monday) then two days the next month and so on. Come off the pill gradually. Well done you though, as you only have 8 months to go! Blessings!

Sue Ellen Murrey | @semurrey | May 9, 2023

In reply to @katrina123 "Sue Ellen, Following are the dates of my follow-up scans. Jan 2020 - Lumpectomy Feb 2020..." + (show)

So helpful, Katrina- - I called my radiation oncologist as she concurred with my oncologist's opinion that scan before a year is not helpful and that after my diagnostic mammo (Oct 2023 a year after initial diagnosis) I should ask if my onco feels supplemental scans like an MRI should be added. I am going to request this so that going forward I would then have an MRI April 2023 alternating every 6 months with mammo. I'm 57 years old, ILC was 2cm, stage 1, no nodes, lumpectomy, radiation and letrozole. My other breast while dense looked "clear" in MRI I had pre surgery which is why I went with only lumpectomy (no BRAC gene).
I was just wondering why your MRI was done 2 mos "post lumpectomy" - did you have other symptoms. I really appreciate you weighing in.

sirene | @sirene | Jul 31, 2023

In reply to @cindylb "Hello fellow Stage 1.... I had lobular (not ductal) cancer and so opted for a bi..." + (show)

@cindylb

Hello fellow Stage 1....
I had lobular (not ductal) cancer and so opted for a bi lateral mastectomy because my Stage 1 came after a Stage 0 and I'd already tried lumpectomy. All that said my risk is about the same as yours for recurrence. I tried 3 of 4 hormone drugs (Arimidex, Letrozole and Tamoxifen). With all three I had serious side effects including joint pain, depression, stomach issues and finally (my final straw), during the 3 months of trying all these drugs I got Shingles and mono. My body doesn't like any drugs, let alone these. I had to opt NOT to use the hormone drugs. They tell me if it comes back I have to use them and I suppose I will but I was so miserable and ill on them it didn't seem worth it given the chance of recurrence.
SO................I finally asked my oncologist WHY DON'T YOU TEST WOMEN'S HORMONES? And the answer was that they 'assume' all breast cancer women will be on the drugs anyway so there is no need. They tested my hormones at my request and I had so little estrogen naturally in my body that they were actually concerned that I had no estrogen (I have estrogen positive breast cancer). I had never had Progesterone or it was very, very low (hence the over dominance of estrogen by whole life) which had caused me multiple problems throughout my life. I have had the on going estrogen and progesterone tests (as well as Testosterone off and on) for 3 years now and I have no hormones to feed the cancer.
I'm sure the meds do things other than simply erasing hormones quickly from your system that are advantages for keeping breast cancer at bay but I opted to be monitored more closely and feel better day to day.
AT THE VERY LEAST........ASK YOUR DOCTORS TO DO A BLOOD TEST TO GET YOUR HORMONE LEVELS. It's easy, quick and gives you a snapshot of your hormone activity. There is a more advanced hormone profile that can be run as well that I had done during menopause (for Stage 0 breast cancer) which showed an estrogen dominance off the charts. That was a urinalysis and some blood work and was done by a homeopathic doctor my open minded oncologist at the time suggested. I learned a lot there too about acidic vs alkaline body type, diet and safe supplements to stop cancer. In my case it didn't work but perhaps slowed it down a bit. Also, I lost 30 pounds along with diet changes following my mastectomy. Hormones are produced in fat and can aggravate the levels and contribute to cancer. Another thing I learned is that many skin care products contain PABA and that can mimic hormones in your body. I use a lot of lotion (live in a dry climate) and I have changed lotions, shampoos and other products to limit my exposure. None of these changes have impacted my life greatly. In fact, most (losing weight, diet, careful use of products, etc) have actually improved my health....no nothing crazy there and nothing lost.
We are lucky we were diagnosed at a low risk stage. There are no guarantees that we won't get cancer again but you have to consider how you feel today and whether you can enjoy your life.
Finally, I still worry every day (a little) and lots when I come up on my six month check ups that not taking the pills was a mistake but they just made me feel too sick. You are not alone.......Some of us just don't tolerate the 'usual' treatment. P.S. I am about to be 61 and was diagnosed first at Stage 0 at 56 years and Stage 1 at 58 years.
HUGS............
Hugs to you!

Jump to this post

I had to ask my gp and my gynocologist to test my estrogen levels. I started on Letrozole March 31. I am post menopausal, have had a hysterectomy and my levels went from 15 to 8 then to 27. I am concerned that this is not low enough since I am on Letrozole. What were your levels?

sirene | @sirene | Jul 31, 2023

In reply to @cindylb "Very true on the hormone tests only showing that moment in time on your hormones but..." + (show)

Do you mind me asking what your levels are? Thanks.

cindylb | @cindylb | Aug 1, 2023

In reply to @sirene "Do you mind me asking what your levels are? Thanks." + (show)

Oh my gosh, it's been such a long time ago and now I don't remember and I can't find that file (it's here somewhere, ha ha). I do remember that my Progesterone was 0 (I later learned that having too little progesterone was my problem all along, nothing to stop my Estrogen)....The estrogen was low enough that the use of the AI drugs couldn't get it any lower? I know that's not the help you need and I will continue to look for that old record and get back to you. I was post menopausal at the time by about a 1 to 1.5 years.

tamtam24 | @tamtam24 | Sep 23, 2023

Has anyone found any significant difference in hair thinning between the various inhibitors? I've been on Anastrozole for about a year and a half. I have knee pain/stiffness when I get up from a chair or walk up and down stairs, but once I get going on a flat surface, no pain. I also have chronic tiredness and terrible insomnia. However, I can live with all those. The hair thinning is particularly tough for me because I already struggled for years with androgenic alopecia. Fortunately, it was mostly around the hairline and on top and I have naturally wavy/curly hair, so even the dermatologist I saw a few years ago had to get right on top of me to notice. I then started taking Rogaine, which seemed to stabilize my hair. However, since being on the Anastrozole, the thinning seems much worse. I don't lose hair, just each hair is so thin. I've had two really humiliating experiences recently where I was in a picture and shocked at how noticeable my thinning has become. I know that the hormone therapy is key, but, boy, I already felt so bad about myself and how I looked, and now I feel so defeated and depressed. Any insights? Experiences? Advice? Thanks for listening!

tamtam24 | @tamtam24 | Sep 23, 2023

In reply to @virginiae "Oh, you are not alone! Almost 2.5 years on this drug and anxiety & depression are..." + (show)

I am crying as I write this because you capture perfectly how I feel on Anastrozole. I don't even recognize myself in the mirror - weight gain, thinning hair. Plus, I have raging insomnia that leaves me tired all the time. I find that oncologists, naturally, just care about the cancer returning and downplay the side effects. That then leaves one feeling so alone, like a failure if you experience side effects that they minimize.

sequoia | @sequoia | Sep 24, 2023

In reply to @tamtam24 "I am crying as I write this because you capture perfectly how I feel on Anastrozole...." + (show)

@tamtam24 (((HUGS))). You are not alone. We are all here for you. I’m sorry you are going thru this. I took Anastrozole and had side effects. Took it for 2 1/2 years. Maybe ask your dr to prescribe a different AI or I’ve also hear others here say getting the name brand vs generic made a difference. Talk to your dr and try and get them to listen. Blessings & hugs.

tamtam24 | @tamtam24 | Sep 24, 2023

In reply to @sequoia "@tamtam24 (((HUGS))). You are not alone. We are all here for you. I’m sorry you are..." + (show)

Thank you for your kind words!

otas | @otas | Sep 25, 2023

In reply to @mjay "I have been on Anastrazole/Arimidex for one year. I've had some joint pains but nothing unmanageable...." + (show)

I have just started to take Anastrozole after having lumpectomy & radiation for stage 2 ER+ breast cancer with clear lymph nodes.
I also have thalassemia minor & gilberts syndrom.
I’m quite anxious about taking Anastrozole as I’m not sure this is safe for me considering my health situation.

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