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A MyBCTeam Member asked a question 💭
Newnan, GA
December 12, 2019
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A MyBCTeam Member

Well.....the first couple of months I felt depressed. I had bone aches. Non stop neck pain and hot flashes. I took a 2 week break. Now I take it every other day. Things are better. But also I noticed that when I watch my carbs and don’t eat sugar I feel pretty normal. I did it once a couple of months ago fir a couple of weeks and really felt great. Then slacked off. Went back to feeling like an achy tired slug. A week and a half ago I started watching what I eat again and I seriously feel pretty good!! So for me what I eat has a huge effect on my anastrozole side effects.

December 12, 2019
A MyBCTeam Member

Bernie,
Here is my story on anastrozole/ Arimdex. 1 took anastrozole over 16 mos.On my oncologist visit Nov 14. I dreaded telling him I chose to take a break from a arimdex. I had tried to start back on it 3 times before Nov, but couldn't tolerate the side effects any longer.The paper I signed at the cancer center includes:
Has "liver damage/ eye changes" Never had liver issues. Seeing the same PCP for approx 15 yrs, last 2 visits to onco, liver enzymes were elevated. My pcp does my blood work also, he noticed a gradual rise in them over the last yr, May 22 he ordered abdominal scan w/ contrast. Results - fatty liver.
Oncologist wasn't concerned.
First i noticed fatigue after a few weeks, then had hot flashes, nights sweats, vivid dreams, severe bone pain ,even my ankles would hurt, joint swelling, mood swings and gained over 15 lbs.I even bought copper fit knee support and hand gloves. Also a cream prescribed by my pcp.
July, I was diagnosed with glaucoma, my eye pressure was highest ever. My optometrist has been monitoring it every 6 mos. Glaucoma is in my family history, but they were diagnosed later in life. In October was diagnosed with posterior vitreous detachment. Yes, this can be common to some in their older age. However had never hear of pvd. 2 mos after stopping anastrozole my liver enzymes went from AST 140 to 89 ALT 176 to 103
Still elevated, but they are considerably lower. Optometrist visit today my eye pressure is 16/18 down from 26/24, however I am now on latanoprost drops PVD is no worse. My joint pain is much better, could actually play with my grandsons 2 weeks ago. no night sweats, hot flashes.
Tolerating the side effects seems to have done me some harm. I have been prescribed Exemestane and not
Sure the benefits will out way the risks.
As you know we are all different and tolerate medications differently. This was my experience.
So many others have no side effects. praying you will be the same . Just wasn't my case.
Sending you lots of encouragement on your new rx.

December 12, 2019 (edited)
A MyBCTeam Member

Where to start? I've had (or continue to have) each of these at one point or another: muscle/joint pain and stiffness, swollen joints, swelling in left leg (only the one leg, which makes no sense), hot flashes, blurred vision, enlarging of existing cataracts, fatigue, constipation, scratchy throat, mild dizziness, hair loss/thinning, lower back pain, itchy/dry skin, weakness in the arms/hands, insomnia. That's about all I can remember at the moment.

However, every case is different. I had no side effects for the first three months, then everything changed. So I'm not convinced that it's a matter of your body adjusting to the drug the longer you take it. I think it's a matter of you figuring out how to adjust your body to the side effects. Some side effects are worse now than they were at the beginning, while others have dissipated somewhat. Others have required outside help and extra effort to endure them. I had to have surgery to correct the cataracts, and I have been doing acupuncture and tai chi (when I think about it) for the muscles and joint pain. Weight-bearing exercise and walking helps, but only working out the kinks helps with the finger joint pain.

December 12, 2019
A MyBCTeam Member

Emestane hormone blocker I stopped it 11/26/19

January 17, 2020
A MyBCTeam Member

I’ve been on Letrizole for about eight months. The first two or three months weren’t bad but since then the side effects have been getting progressively worse. I have constant pain and stiffness and in many of my joints and muscles. Trigger finger in both thumbs. Hot flashes especially at night when I’m trying to sleep. My tailbone hurts all the time as well as my left knee. I told my oncologist that when I turn over or move in bed at night the pain in my tailbone wakes me up. She said it isn’t my back pain but my depression that is waking me up. I can’t believe I let her tell me that without saying anything. It is absolutely my back pain waking me up at night. It is difficult to function without much sleep.
My Oncotype DX score was high so I’m afraid to go off of the Letrozole but I’m also afraid to stay on it. I’m at my wits end.

December 27, 2019

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