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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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francine6829 | @francine6829 | Mar 29, 2019

Where do you live ? I am in northern Virginia

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sparklegram | @sparklegram | Mar 29, 2019
In reply to @francine6829 "I was thrilled I did not need chemo. Radiation was a non event for me. Its..." + (show)
Profile picture for francine6829 @francine6829

I was thrilled I did not need chemo. Radiation was a non event for me. Its these AIs that are a killer

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Me too, Francine. 15 radiation treatments and no chemo. Whew!

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francine6829 | @francine6829 | Mar 29, 2019

I was thrilled I did not need chemo. Radiation was a non event for me. Its these AIs that are a killer

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kathyomaha55 | @kathyomaha55 | Mar 29, 2019
In reply to @francine6829 "Maybe you have an zero estrogen level too! I have never heard the oncotype test connected..." + (show)
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Maybe you have an zero estrogen level too! I have never heard the oncotype test connected to radiation only chemo. My oncotype was 12 and I did 4 weeks of radiation

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The oncotype - determines if you need Chemo. I was a 22. I had 21 radiation treatments. The study that came out in June of 2018 determined that women in the "middle range" (I think that was from 15 to 26) - do Not benefit from Chemo for survival rates. They studied like 8,000 women over 10 years. Radiation is from the fact you got a lumpectomy vs a mastectomy. Personally - I was glad the study came out, as my oncologist said she would have given me chemo otherwise. The AI's ARE a form of Chemo though. During Radiation - I got what looked like a sunburn on my skin and my nipple turned dark brown. 🙁

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sparklegram | @sparklegram | Mar 29, 2019
In reply to @francine6829 "Does she believe the Arimidex caused your lower back to deteriorate. Remind me how long you..." + (show)
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Does she believe the Arimidex caused your lower back to deteriorate. Remind me how long you have been on Arimidex?

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I've had spinal stenosis for years, but I don't know about the multilevel degeneration, or how long that has been happening. I've been on Arimidex for 14 months. This extreme and very limiting pain is recent.

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francine6829 | @francine6829 | Mar 29, 2019

Does she believe the Arimidex caused your lower back to deteriorate. Remind me how long you have been on Arimidex?

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sparklegram | @sparklegram | Mar 29, 2019
In reply to @francine6829 "Yesterday, when my doc took my estrogen levels and saw they were zero AND I complained..." + (show)
Profile picture for francine6829 @francine6829

Yesterday, when my doc took my estrogen levels and saw they were zero AND I complained of bone pain, he has taken me off of Femura for 2 weeks. Doc said sometimes that helps to reset the body. I might ask to try Tamoxifen. Did you have an Mri of your knee? Does your spinal doc think the Arimidex caused the spinal degeneration?

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@francine6829 - the MRI was of my lower back. She just prescribed an X-Ray of my hip and femur for today. I just emailed my Oncologist to ask her opinion about an experiment of going off Arimidex for two weeks. I got a rapid response that she is out of the office until the 8th!

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francine6829 | @francine6829 | Mar 29, 2019
In reply to @sparklegram "I wrote here last week that I'm having such leg, hip, and knee pain that my..." + (show)
Profile picture for sparklegram @sparklegram

I wrote here last week that I'm having such leg, hip, and knee pain that my doctor ordered an MRI. It showed a worsening of my stenosis and spinal degeneration. I have an appointment with my spine doctor on the 9th. I'm thinking of trying an experiment (with the consent of my Oncologist) of going off Arimidex for two weeks to see if that might be the culprit. Has anyone here tried that, and if so what were your results?

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Yesterday, when my doc took my estrogen levels and saw they were zero AND I complained of bone pain, he has taken me off of Femura for 2 weeks. Doc said sometimes that helps to reset the body. I might ask to try Tamoxifen. Did you have an Mri of your knee? Does your spinal doc think the Arimidex caused the spinal degeneration?

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2 replies
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sparklegram | @sparklegram | Mar 29, 2019

I wrote here last week that I'm having such leg, hip, and knee pain that my doctor ordered an MRI. It showed a worsening of my stenosis and spinal degeneration. I have an appointment with my spine doctor on the 9th. I'm thinking of trying an experiment (with the consent of my Oncologist) of going off Arimidex for two weeks to see if that might be the culprit. Has anyone here tried that, and if so what were your results?

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francine6829 | @francine6829 | Mar 28, 2019
In reply to @berit "Wow! Talk about being between a rock and a hard place! I had some of those..." + (show)
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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

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Berit- what did you find that worked better?

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