SERMs and AIs - Choosing not to take them

Posted by bpickartz @bpickartz, Aug 15, 2019

I had a SMX, Stage I, no lymph node involvement, four weeks ago. I'm HER2 Negative, ER Positive and PR Positive. I've had open heart surgery for Hypertrophic Cardiomyopathy and Afib. Many years ago (50 years) I had blood clots in my lungs attributed to birth control pills, so I've never taken hormones. I've read all the side effects and am inclined not to take these medications. Has anyone else opted not to follow their doctor's advice about this protocol?

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@cctoo

Yes, I chose not to take them after trying each one, for just a couple days...side effects awful. I am almost three years of just having lumpectomy...no chemo needed, did not do radiation either...as no way to get there for six weeks, and I am 82. So far no recurrence....!!

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Everything I've read has led me further from them. I wish you 20 more healthy, cancer-free years.

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@lisman1408

Please let us know which of the drugs you have been on for a year and that is working for you.

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Because side effects differ so greatly for every person and for every drug, I hesitate to state my own particulars, which may not apply to others, and prefer to emphasize trying the different medications in hopes that one works for you.

Evista/Raloxifene, which is the least effective of the 5 ( the other 4 being Tamoxifen, Armidex/Anastrozole, Femara/Letrozole, Aromasin/Examestane) has been ok for me now that I have strategies in place to reduce the frequency and severity of leg cramps when I sleep. I stretch my calves and lower legs often during the day, before bed, and if I have been particularly active or doing new activities, I get up in the middle of the night to stretch. No other side effect for me that I am aware of besides leg cramps. And I was prone to leg cramps before taking the drug, and my mother gets leg cramps too, starting at about the age I am. The oncologist told me that my weight and blood pressure mean the risk of blood clots are not elevated for me by taking Evista/Raloxifene.

Best wishes to you all in your decisions. It would be great if a better alternative without frequent side effects were developed.

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@bpickartz

Everything I've read has led me further from them. I wish you 20 more healthy, cancer-free years.

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Thank you, and wish same to you. The reason for side effects Kettering that they remove every bit of hormones needed by our bodies to keep us well!!!

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And I could not function of I had a heart attack, or broken hip !! It is quality over quantity perhaps we are choosing.

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I have no side effects at all with Evista, but did not know we could take that in place of the others...I was talking my it for osteoporosis.

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Please all...excuse mistake ...my tablet changes and adds words!!!

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@sparklegram

My side effects on anastrozole are joint pain, hands and feet pain, insomnia, hair loss, fatigue, and feeling about 174 years old instead of 74. i am on week 4 of a six week break, just to see how i feel. Then I plan to go back on them. HOWEVER, not everyone has side effects. My sister-in-law was on it for 5 years with no side effects. People without side effects will most likely not be posting here.

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Good morning everybody, I just finished my 6 week hiatus from Arimidex. In my previous post on August 16th, I listed all the side effects I was having from that drug. Here is what I've noticed after 6 weeks away: my joint pain has subsided. Pain in my hands and feet is gone and even my thumb pain is almost gone. I no longer have insomnia, except for the occasional nights, caused by something other than the drug (like being 74!) My fatigue has lessened. I just had a two week bout of leg and knee pain, but that was caused by stenosis. I had an epidural on Tuesday and that helped immensely. Sooo.... Monday I will will return to the Arimidex, mainly because i want protection from a recurrence of cancer and because from what I've read on this amazing, helpful site, all of the AI's have similar side effects and I guess I don't want to have to deal with any new and unpredictable ones. Thank you all for your presence here in these discussions!

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@sparklegram

Good morning everybody, I just finished my 6 week hiatus from Arimidex. In my previous post on August 16th, I listed all the side effects I was having from that drug. Here is what I've noticed after 6 weeks away: my joint pain has subsided. Pain in my hands and feet is gone and even my thumb pain is almost gone. I no longer have insomnia, except for the occasional nights, caused by something other than the drug (like being 74!) My fatigue has lessened. I just had a two week bout of leg and knee pain, but that was caused by stenosis. I had an epidural on Tuesday and that helped immensely. Sooo.... Monday I will will return to the Arimidex, mainly because i want protection from a recurrence of cancer and because from what I've read on this amazing, helpful site, all of the AI's have similar side effects and I guess I don't want to have to deal with any new and unpredictable ones. Thank you all for your presence here in these discussions!

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@sparklegram
Glad to hear how your symptoms receded. I've been given a 3-week hiatus from the letrozole and will be starting exemestane soon. My knee, ankles, feet, hands, and elbows got so bad - couldn't take it anymore. However, since then I had x-rays of knees and hips which do show narrowing and osteoarthritis. Sure wish we didn't have to take this stuff, but the alternative just isn't great.

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@trixie1313

@sparklegram
Glad to hear how your symptoms receded. I've been given a 3-week hiatus from the letrozole and will be starting exemestane soon. My knee, ankles, feet, hands, and elbows got so bad - couldn't take it anymore. However, since then I had x-rays of knees and hips which do show narrowing and osteoarthritis. Sure wish we didn't have to take this stuff, but the alternative just isn't great.

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I'm sorry you're having all this pain. i hope the new drug is better, Trixie.

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@sparklegram

I'm sorry you're having all this pain. i hope the new drug is better, Trixie.

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@sparklegram -- Thanks! Time will tell. In the meantime, I've upped my turmuric/curcumin hoping that will calm the arthritis down.

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