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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Just for balance, for those lurking here, I and several of my friends took anastrozole or letrozole with few significant side effects.

@bjjoyce1 I am also sensitive to meds. I tried different generics by different manufacturers and finally settled on brand name Femara (letrozole). Maybe you could try that instead of compounding.

@timely I make a distinction between "reaction" and "side effect." I get weird neurological effects very quickly as a reaction to some meds, apparently to the fillers. However the side effects of estrogen deprivation from AI's take longer to happen. Do you think you could try a different manufacturer or brand name?

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@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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You may want to get a Calcium Score ( CAC which measures plaque in arteries ). High cholesterol does not always mean you have a plaque problem. And AI doesn’t always raise cholesterol; it did not for me.

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@songsparrow

I appreciate the words of support, and I am happy that so many of you have been able to take them without any severe effects. I've been on anastrozole for a year now. The side effects weren't bad at first, mostly just really bad hot flashes, but they don't bother me anymore. I have hereditary high cholesterol though, and had osteopenia at my initial DEXA scan. Haven't had intercourse with my husband since my diagnosis (too painful). I have memory loss and confusion. The pain and stiffness in my knees is pretty bad. I'm 49, but I feel like I've aged 20-30 years in the past 12 months. I have my appointment with my oncologist in a few hours though, so I will voice my concerns to him.

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A doc in a sexual health clinic practice recommends water based moisturizer ( applied to outer vaginal tissues with fingers not applicator) for women in general but also those experiencing vaginal thinning due to chemo, radiation and AI meds.

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@tenayalake86

Wow. I am sorry to hear that. I had been taking anastrozole for almost 7 months when my joints locked up. I didn't have radiation because women after 70 don't get much protection statistically. Doc allowed me a brief vacation from the anastrozole for Christmas [which I stretched to 3 weeks] because of the anxiety. Do you know what the side effects of Lestrozole are? I see my onco in mid-March and I expect he'll switch me to that. Good luck and thanks for writing.

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tenayalake86
I am 81 and they gave me radiation for 5 days, I was to take the pill after
radiation but after reading all about each pill, there all in the same family
and block the estrogen. the reporting from this site I decided my quality of
life is more important than feeling bad every day. I chose not to take any pills,
they will check me every 6 months, and as you get older the slower it grows if
it should come back.

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@marcia115

tenayalake86
I am 81 and they gave me radiation for 5 days, I was to take the pill after
radiation but after reading all about each pill, there all in the same family
and block the estrogen. the reporting from this site I decided my quality of
life is more important than feeling bad every day. I chose not to take any pills,
they will check me every 6 months, and as you get older the slower it grows if
it should come back.

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Thank you for your reply. I am leaning against continuing anastrozole. I am 74 and have twice had to stop taking it due to anxiety and severe joint pain. I am currently off it until I see the oncologist next month. I have also researched the side effects of both anastrozole and letrozole. Both have many negative side effects. I wish I could continue but, as you have said, quality of life enters into my decision. Good luck to you.

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tenayalake, Good luck to you also. It is my choice not to take the pills, The
Drs keep pushing them, they don't know how bad it makes you feel.

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@marcia115

tenayalake, Good luck to you also. It is my choice not to take the pills, The
Drs keep pushing them, they don't know how bad it makes you feel.

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Doctors sure don’t get side effects. I am taking Anastrozole and didn’t start experiencing noticeable side effects until a year into it. Doctors think listening to your concerns and then recommending Bengay and Tylenol is a satisfying response. I am so tired of reading the same side effects that are on a catsup bottle. I took control of my issues and pretty much addressed each side effect in one way or another. Should not have to be this way taking back control of the situation myself has helped me greatly. Ever onward!!!

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Unfortunately Bengay and Tylenol do little against high cholesterol and osteoporosis. I am 63 and have been on Anastrozole for 1 year. A visit to my primary doctor last month showed my bad cholesterol is in the high range for the first time even though I exercised and got my weight down to normal range. The pain in my hips is gradually getting worse. On the upside strength training has improved overall fitness which will help with stability.

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I, too am concerned about taking Letrozole. I finished my treatment (surgery and 5day rad), in November ‘22. My oncologist has vehemently recommended the AI prior to treatment during consultation and this week during post exam. She actually said my cancer may “come back a stage 4”. without the AI. My cancer was caught early, stage 1, low grade and small tumor. I opted for the radiation instead of the pills, but now the oncologist is insisting. I have osteopenia, am 74 and don’t historically do well with meds.
As a footnote, 30 years ago my OBGYN prescribed PremPro to help me during early menopause, which contributed to my cancer. Now, another expert wants me to take another pill to “help” me. I’m very wary…has anyone declined the AI? Anyone had a recurrence?

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@gldilli

Unfortunately Bengay and Tylenol do little against high cholesterol and osteoporosis. I am 63 and have been on Anastrozole for 1 year. A visit to my primary doctor last month showed my bad cholesterol is in the high range for the first time even though I exercised and got my weight down to normal range. The pain in my hips is gradually getting worse. On the upside strength training has improved overall fitness which will help with stability.

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I am 67 and I have been taking anastrozole for 5 months. My cholesterol went up and the doctor suggested medication. I attributed the high cholesterol to eatibg too much ice cream and told him to let me have time to get my diet in check. I have been dealing with joint pain for several years but recently notice bone pain in my hips, feet, ankles and forearms. I don't know if it is from the anastrozole or just age. I find walking does help. I try to walk at least 5 miles a day or at least 5 says a week. I am afraid to stop taking the medication because I don't want to get breast cancer.

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