Aromatase Inhibitors: Did you decide to go on them or not?

Posted by nanato6 @nanato6, Oct 12, 2018

Nanaloves: I’m about to start arimidex and just feel that the contraindications , bone issues etc. are overwhelming. I’m 70 years old, dodged a bullet I feel with zero stage DCIS but the follow up is pretty much no different then if it was more aggressive. I’ve just done 33 treatments of radiation and now they advise arimidex as a preventative. I’m not sure with the beginnings of arthritis and lower back. sensitivity already that I should take it. Anyone not take it and not have a recurrence within the 5 years.

@mimi99

I decided against it. I was diagnosed earlier this year, stage one,
negative nodes. I had lumpectomy and 3 proton beam treatments. I am
currently recovering from reverse shoulder replacement, have had two knee
replacements, lots of arthritis, and fibromyalgia. I am almost 70,
currently taking tamoxifen, and fingers crossed evdrything will go well.

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I am experiencing extreme nausea and belching. I have been on tamoxifen for one and a half years. I was also taking Eliquis as blood clots are a side effect of tamoxifen and a blood clot did form at my port site when I had chemo. Just had an EGD that showed chronic gastritis. It has been shown that Eliquis does cause gastritis in 14% of people. Blood thinner was changed to Xarelto. Was off tamoxifen for 6 weeks during all this. I was back to feeling as good as I did before having breast and thyroid cancer! Have been back on the tamoxifen for just a week and am experiencing extreme nausea again. Has anyone else had similar experiences? Any suggestions? Is anyone taking just 10 mg of tamoxifen instead of 20 mg?

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@mugs24cancer

I am experiencing extreme nausea and belching. I have been on tamoxifen for one and a half years. I was also taking Eliquis as blood clots are a side effect of tamoxifen and a blood clot did form at my port site when I had chemo. Just had an EGD that showed chronic gastritis. It has been shown that Eliquis does cause gastritis in 14% of people. Blood thinner was changed to Xarelto. Was off tamoxifen for 6 weeks during all this. I was back to feeling as good as I did before having breast and thyroid cancer! Have been back on the tamoxifen for just a week and am experiencing extreme nausea again. Has anyone else had similar experiences? Any suggestions? Is anyone taking just 10 mg of tamoxifen instead of 20 mg?

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I was on tamoxifen for almost 8 years. (2009) Worst side effects were weight gain & insomnia.
Prior, I was not able to tolerate Arimidex or Aromasin. Oncologist was surprised that I tolerated tamoxifen so well. Maybe trying a different med will be helpful. These estrogen blocking drugs are strong & powerful but can be difficult to tolerate. But as I’ve said in previous post, they are so important! 3 years after going off tamoxifen, my breast cancer metastasized & is now in my bones. I’m now on letrozole & Ibrance & tolerating well.
@mugs24cancer I hope you can find an alternative to tamoxifen that you can tolerate. Best of luck to you!

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@djwc

I was on tamoxifen for almost 8 years. (2009) Worst side effects were weight gain & insomnia.
Prior, I was not able to tolerate Arimidex or Aromasin. Oncologist was surprised that I tolerated tamoxifen so well. Maybe trying a different med will be helpful. These estrogen blocking drugs are strong & powerful but can be difficult to tolerate. But as I’ve said in previous post, they are so important! 3 years after going off tamoxifen, my breast cancer metastasized & is now in my bones. I’m now on letrozole & Ibrance & tolerating well.
@mugs24cancer I hope you can find an alternative to tamoxifen that you can tolerate. Best of luck to you!

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@djwc, Wishing you a complete recovery.

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@crazydaisy

Is there anyone out there that did not go on the five year pills?

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@crazydaisy
Five years? Nope…Unfortunately, I'm on the 10-year plan due to the neuroendocrine cancer of the breast. What I have found though is not to settle for problems with AIs, but to move on to another one if the first or even the second don't work out for you. I was so depressed with the pain and all the other side effects of the first one that I have been pleasantly surprised by the third one I tried and have been doing fairly well on that for a year now.

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Is there anyone out there that did not go on the five year pills?

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@crazydaisy

Is there anyone out there that did not go on the five year pills?

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@crazydaisy @trixie1313
And like Trixie, I'm on AIs (first anastrozole and now exemestane) for seven years as I'm tripple positive for hormone receptors.

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@crazydaisy

Is there anyone out there that did not go on the five year pills?

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CrazyDaisy, I think most oncologists suggest some sort of estrogen lowering medication following breast cancers that are estrogen positive—, those that are driven by estrogen. However many of us do not tolerate these medications very well, and have side effects that are hard to live with.

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I've scheduled a 2nd opinion and am considering an AI for my IV stage metastatic breast cancer, it gone to my bones so the posts regarding bone loss are helpful but frightening. I'm hoping the MD I'm trying to see will discuss options as the last one was take what she said or don't take anything.

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@junec

I've scheduled a 2nd opinion and am considering an AI for my IV stage metastatic breast cancer, it gone to my bones so the posts regarding bone loss are helpful but frightening. I'm hoping the MD I'm trying to see will discuss options as the last one was take what she said or don't take anything.

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A second opinion is never a waste of time in my opinion. I read like 25% of women that take AI's, have such bad side effects that they quit before the 5 years. And the new standard is to take them for 10 years! There are 3 main drugs and then tamoxifen (which is usually for women under 50). So many factors go into deciding whether to go onto an AI, but just get as informed as you can. There is even a calculator to see if the drug will decrease the re-occurrence of you cancer. Since it is already metastatic – I have no idea if these drugs are effective. I have not suffered any bone loss & I take 4,000 units of D3 Oil daily and 1,000 of calcium. Every person is different with side effects and only you can make the decision with a doctor you can TRUST. Good luck.

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@junec

I've scheduled a 2nd opinion and am considering an AI for my IV stage metastatic breast cancer, it gone to my bones so the posts regarding bone loss are helpful but frightening. I'm hoping the MD I'm trying to see will discuss options as the last one was take what she said or don't take anything.

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@junec
Have you looked into Ibrance combined with your AI? Two of my breast cancer support friends have done well with this with their metastatic cancer to bone. One is going on 4 years and doing fine. The other was fine for several years and is now undergoing more treatment for disease progression. Here is a site where you can start looking: https://www.breastcancer.org/treatment/targeted_therapies/ibrance

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@crazydaisy

Is there anyone out there that did not go on the five year pills?

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@crazydaisy I was on Anastrozole for 6 months it was terrible for me and I had horrible body aches. My doctor had me take a break and switched to Tamoxifen after a while I felt aches again. I have opted to take nothing as I am considered low risk. The doctor told me taking Tamoxifen would cut my risk in half. I have a feeling a lot of women wrestle with this decision I know I do but also know at 66 years old my quality of life is important to me. I was diagnosed April 2018 so far so good.

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