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.

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Profile picture for songsparrow @songsparrow

Thank you to everyone who has shared their experiences on this thread. I have spent a considerable amount of time reading through it.

I'm currently 49, been on anastrozole (arimidex) for one year. Have my one year appointment with my oncologist on Friday, where I hope to have a discussion about the side effects of the AI. I went through menopause at 45, when I started HRT to help with the symptoms. Two years later (2021) I was diagnosed with IDC, presumably from the HRT but I don't think that can be proven. I don't have an oncotype for my tumor (is that something that I should have?), and my doctor never discussed the recurrence rates, but I didn't ask. I have a 9 year old son with moderate-mild autism, and my main priority is living as long as possible to make sure he is set up for success in life. I did everything my doctor said without question. What I do know is that my OB said that if I had to get cancer, this was a very good diagnosis to get. I was told my tumor was slow growing and non-aggressive. Clear margins and no lymph node involvement. ER/PR+, HER2-, Ki-67 is 8%. Lumpectomy and 25 radiation treatments, no chemo. My mammogram in September was good, and I have another scheduled for this September. My genetic testing showed no BCRA positive genes.

I have been taking anastrozole and dealing with the side effects mainly because I want to live as long as possible for my son. I have joint pain in my knees, mild hot flashes (gabapentin has helped), and vaginal atrophy. My husband and I haven't been intimate since my diagnosis, because it's just too painful. OTC remedies are too painful to use correctly (I have tried). I have been on the AI for a year now, and I have been having brain fog and memory loss. It's been so bad that I was worried I might have early alzheimer's. I was almost in a car accident a couple months ago, because I was spacing out so bad at a 4-way stop that I started to go when it wasn't my turn. That terrified me, and I still don't know why I did that. I stumbled across a study that showed AIs can cause cognitive decline and memory loss, so I did some more research and also learned they can cause high cholesterol. I have had high cholesterol since I was 20 years old. Maybe it's genetic? I spent 14 years active duty army, and in the best shape of my life my cholesterol was high. I've gained 10 lbs since menopause, but I'm still active and do high intensity, bootcamp style workouts 4 days a week. My initial bone density scan a year ago said I had osteopenia in my left hip and femur, but the right side was normal.

A year ago I was worried about getting a recurrence, but now I am worried about my overall long term health. I'm only 49, and I can't help but wonder if these side-effects are reversible after I stop taking the medication in 4 years (assuming I continue to the end). Am I risking increased chances for heart disease, stroke, or osteoporosis later in life? I know nobody here can answer that, but these are the questions I am going to ask my oncologist on Friday. I certainly do not want cancer again, but I feel completely in the dark regarding the risk of recurrence vs. the potentially life shortening risks of these side-effects.

Thank you for taking the time to read. It feels good to get that off my chest, and to people who understand what I am going through.

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Was diagnosed in November and I am 64 and I am not going to take them. ER/PR+ HER2-. They for me are not worth the side affects for the marginal percentage of reward. I will do my supplements and exercise and take care of myself as best I can.

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Thank you to everyone who has shared their experiences on this thread. I have spent a considerable amount of time reading through it.

I'm currently 49, been on anastrozole (arimidex) for one year. Have my one year appointment with my oncologist on Friday, where I hope to have a discussion about the side effects of the AI. I went through menopause at 45, when I started HRT to help with the symptoms. Two years later (2021) I was diagnosed with IDC, presumably from the HRT but I don't think that can be proven. I don't have an oncotype for my tumor (is that something that I should have?), and my doctor never discussed the recurrence rates, but I didn't ask. I have a 9 year old son with moderate-mild autism, and my main priority is living as long as possible to make sure he is set up for success in life. I did everything my doctor said without question. What I do know is that my OB said that if I had to get cancer, this was a very good diagnosis to get. I was told my tumor was slow growing and non-aggressive. Clear margins and no lymph node involvement. ER/PR+, HER2-, Ki-67 is 8%. Lumpectomy and 25 radiation treatments, no chemo. My mammogram in September was good, and I have another scheduled for this September. My genetic testing showed no BCRA positive genes.

I have been taking anastrozole and dealing with the side effects mainly because I want to live as long as possible for my son. I have joint pain in my knees, mild hot flashes (gabapentin has helped), and vaginal atrophy. My husband and I haven't been intimate since my diagnosis, because it's just too painful. OTC remedies are too painful to use correctly (I have tried). I have been on the AI for a year now, and I have been having brain fog and memory loss. It's been so bad that I was worried I might have early alzheimer's. I was almost in a car accident a couple months ago, because I was spacing out so bad at a 4-way stop that I started to go when it wasn't my turn. That terrified me, and I still don't know why I did that. I stumbled across a study that showed AIs can cause cognitive decline and memory loss, so I did some more research and also learned they can cause high cholesterol. I have had high cholesterol since I was 20 years old. Maybe it's genetic? I spent 14 years active duty army, and in the best shape of my life my cholesterol was high. I've gained 10 lbs since menopause, but I'm still active and do high intensity, bootcamp style workouts 4 days a week. My initial bone density scan a year ago said I had osteopenia in my left hip and femur, but the right side was normal.

A year ago I was worried about getting a recurrence, but now I am worried about my overall long term health. I'm only 49, and I can't help but wonder if these side-effects are reversible after I stop taking the medication in 4 years (assuming I continue to the end). Am I risking increased chances for heart disease, stroke, or osteoporosis later in life? I know nobody here can answer that, but these are the questions I am going to ask my oncologist on Friday. I certainly do not want cancer again, but I feel completely in the dark regarding the risk of recurrence vs. the potentially life shortening risks of these side-effects.

Thank you for taking the time to read. It feels good to get that off my chest, and to people who understand what I am going through.

REPLY
Profile picture for bolesee @bolesee

I had the radiation in mid August, no issues then or now.

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So helpful for me! Many thanks. I had BC surgery end of September. Radiation just last week, 5 days, Mon.-Fri. Feeling good, just tired. Waiting for post Rad consult. Any advise? Thank you for your kindness🌷

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Profile picture for elliej @elliej

Thank you for responding. How long ago was your treatment? Any delayed reactions after a couple of weeks. I have felt pretty good, just tired on my 1 week out. ❤️

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I had the radiation in mid August, no issues then or now.

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Profile picture for bolesee @bolesee

I did 5 treatments, MWF one week and then Tue and Thur the next week, zero skin irritation and no other side effects.

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Thank you for responding. How long ago was your treatment? Any delayed reactions after a couple of weeks. I have felt pretty good, just tired on my 1 week out. ❤️

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Profile picture for elliej @elliej

Hello loves, I just finished my 5 day course of radiation, so far,just a bit of pink skin. I am so relieved to have finished this part of my treatment/recovery. I was wondering if anyone else has had the 5day (1week) course and experienced any reactions post treatment. Thank you, God Blesd

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I did 5 treatments, MWF one week and then Tue and Thur the next week, zero skin irritation and no other side effects.

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I've just read that a form of vitamin B3 is associated with metastasis. Just leaving it here as a resource:
"Our results demonstrate that Nicotinamide riboside supplementation results in a significant increase in cancer prevalence and metastases of TNBC to the brain."
https://neurosciencenews.com/cancer-dietary-supplements-21823/

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Hello loves, I just finished my 5 day course of radiation, so far,just a bit of pink skin. I am so relieved to have finished this part of my treatment/recovery. I was wondering if anyone else has had the 5day (1week) course and experienced any reactions post treatment. Thank you, God Blesd

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Profile picture for sandybainy1 @sandybainy1

I am taking Letrazole , only on for 4 months but no problems so far. My oncologist also has me taking 400 mg vitamin D and 1200 mg calcium.

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I take 2-3,000 units Vitamin D/day. Some docs recommend more than 400. I buy gummies that are 1,000 units each. One type of gummy is D3 and one is a combo of D3 and K2, which is also important.

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I am taking Letrazole , only on for 4 months but no problems so far. My oncologist also has me taking 400 mg vitamin D and 1200 mg calcium.

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