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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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.

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.

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!

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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?

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.

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!

katrina123 | @katrina123 | May 8, 2023

In reply to @semurrey "Hi- I've been on Letrozole for 3 months (lumpectomy for 2 cm Lobular, followed by radiation..." + (show)

Sue Ellen,
Following are the dates of my follow-up scans.
Jan 2020 - Lumpectomy
Feb 2020 - Bilateral MRI
April 2020 - Mammogram & ultrasound
October 2020 - Mammogram and ultrasound
Feb 2021 - MRI
May 2021 - Mammogram & ultrasound
Feb 2022 - MRI
May 2022 - Mammogram
Feb 2023 - MRI
April 2023 - Mammogram and ultrasound
I have no idea if this number of scans is normal or not. I have a primary immune disease and I had a cancer that was very rare but is common to recur in the same place.
Going an entire year without a scan seems like a long time. What about your other breast?
I also have dense breasts and 2 months after having a 3D mammogram that I was told was negative I had an ultrasound that showed a 2 cm tumor. Maybe you could get a second opinion regarding follow-up scans.

omer | @omer | May 8, 2023

In reply to @heydon2023 "These Estrogen Blockers have lots of symptoms - not everyone will have them all. But basically,..." + (show)

This is helpful information. I have most of the side effects and have been managing as best I can. My bone doc told me not to take a holiday and has not talked to me about the other types of drugs. I have 8 months to go and maybe that is why. Does anyone know how long the side effects last after you quit this drug?

anjalima | @anjalima | May 8, 2023

In reply to @semurrey "Hi- I've been on Letrozole for 3 months (lumpectomy for 2 cm Lobular, followed by radiation..." + (show)

YES!
Neither a mammo nor an ultrasound found TWO large tumors in one breast. I insisted on an MRI as I had a symptom. It likely saved my life. I now get an MRI and mammo/ultrasound annually… alternating every six months.

nancyjop | @nancyjop | May 7, 2023

I have been taking Anastrozole (Arimidex) for 2.5 years for lobular carcinoma. No side effects. I take only Calcium and D-3 as supplements as well as pro-biotics for the GI system, all prescribed by my doctor. I do yoga each morning, walk up to three miles a day, and go to the gym for a slightly more intense workout twice a week. I am 75 years old.

tctredwell1 | @tctredwell1 | May 7, 2023

In reply to @nanahatton65 "I am post op 3months, had a bilateral mastectomy with stage 1 breast cancer, positive with..." + (show)

I was called a squeaky wheel when I was a kid and shamed for it. As an adult I’ve learned that if I’m not a squeaky wheel I get screwed. So, please, do not apologize for being a squeaky wheel. Ever.