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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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islandelder | @islandelder | Feb 21, 2019

I've been on Arimidex for about five months, but I'm 81 years old and wonder how much of what I'm experiencing doesn't have more to do with my age and less to do with the medications. I took Femara for six months before I was switched to Arimidex because of bone pain. I don't have as much bone pain now but it's still there. My hair was thinning for a while but it seems to be thickening again. The loose, sometimes uncontrollable stools could also be from the multiple vitamins I'm taking in order to keep my bones from thinning--Vitamins A, B12, C, Iron and calcium.
So I guess my question is, how do we know which is which? What if we're blaming Arimidex for all of this when it could be it's actually something else? It sounds like we'v'e all had radiation at some point, so would that account for some of this? I just don't know.

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gwinter | @gwinter | Feb 22, 2019

I am 64 stage 1A all marginal tissues and nodes clear 20 radiation treatments and was still put on arimedex. I tried 2 different times of 3 weeks. No no never again. The joint pain and hot flashes UNBELIEVABLE but remember everyone reacts differently. I have opt out because I want quality of life...

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lisman1408 | @lisman1408 | Feb 22, 2019
In reply to @buckimom "I had practically no reaction to the Arimidex for about a year & a half. All..." + (show)
@buckimom

I had practically no reaction to the Arimidex for about a year & a half. All of a sudden it really kicked in: deformed fingers & toes, challenging joint pain and muscle pain & spasms. The worst is I thought I was beginning into dementia. Had an appointment to be evaluated by neuropsychologist when I inadvertently found that the “dementia” I’ve been experiencing are side effects of the Arimidex. What a relief! I’ll only be miserable for few more years😜. I wish I had known this was a possibility. It would have saved me a great deal of angst. I understand About 50 percent of patients experience these effects within the first 2 years. I will continue with Arimidex as long as necessary and not take myself too seriously 😊. I hope you’re in the other 50 per cent ❤️

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I’m very sorry you have had these side effects, but I must also admit that I am relieved that someone else has experienced this from Arimidex/Anastrozole. I feared I was heading into dementia also, and I’m 65. The anxiety and self consciousness I felt from some mild memory loss was awful. I truly thought I was heading into dementia too! The worst was that my husband wasn’t very nice about it that I couldn’t remember things as well I used to. It inconvenienced him that I forgot things and he didn’t like it at all. Recently, I started itching and breaking out in hives. That’s another rare side effect. My doctor switched me to tomoxifin and the hives and itching is better, but not completely relieved. I’ve given myself a break and stopped taking it twice for about 10 days; after a couple days off the meds I start to feel like my old self again-the itching and hives go away. I know it’s probably not good for me to take a break from it, but at the holidays when I had my family here it was such a joy to be able to feel more like myself again! I’m grateful to have medication available to help prevent a recurrence of cancer, but the side effects sure aren’t pleasant either!

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1 reply
buckimom | @buckimom | Feb 22, 2019
In reply to @lisman1408 "I’m very sorry you have had these side effects, but I must also admit that I..." + (show)
@lisman1408

I’m very sorry you have had these side effects, but I must also admit that I am relieved that someone else has experienced this from Arimidex/Anastrozole. I feared I was heading into dementia also, and I’m 65. The anxiety and self consciousness I felt from some mild memory loss was awful. I truly thought I was heading into dementia too! The worst was that my husband wasn’t very nice about it that I couldn’t remember things as well I used to. It inconvenienced him that I forgot things and he didn’t like it at all. Recently, I started itching and breaking out in hives. That’s another rare side effect. My doctor switched me to tomoxifin and the hives and itching is better, but not completely relieved. I’ve given myself a break and stopped taking it twice for about 10 days; after a couple days off the meds I start to feel like my old self again-the itching and hives go away. I know it’s probably not good for me to take a break from it, but at the holidays when I had my family here it was such a joy to be able to feel more like myself again! I’m grateful to have medication available to help prevent a recurrence of cancer, but the side effects sure aren’t pleasant either!

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@lisman1408

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buckimom | @buckimom | Feb 22, 2019

My husband hasn’t been very patient either. Doesn’t like disruption to his routine. I’m 74 and married 40 some years (can’t remember 😳) & felt quite comfortable telling him to get used to it; I have at least 4 years to go, lol. I feel so fortunate to have found this forum and wish all of us the very best.

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1 reply
francine6829 | @francine6829 | Mar 12, 2019
In reply to @cindylb "Glad you caught the cancer early. I had a stage 0 LCIS which 2 years later..." + (show)
@cindylb

Glad you caught the cancer early. I had a stage 0 LCIS which 2 years later became a Stage One. Because the Lobular is trickier, I opted to have a bi lateral mastectomy so I wouldn't have to go through all the constant testing and worry. All that said......I tried the aromatase drugs (Letrozole and Arimidex) and had ALL the side effects (just lucky I guess) and opted not to use them......at Stage 0 and again at Stage 1. BUT, I think I am the exception. I can't tolerate most drugs. There are lots of people who do tolerate them pretty well. I was 56 when I was first diagnosed and am 61 now. I opted for feeling better most of the time vs. the drugs, but why not try them, see how you feel on them and take it from there. I tried 2 different ones and the Letrozole was better than the Arimidex for me. Everyone is different. I wish I could have tolerated them because perhaps it would have stopped my cancer from advancing to a Stage 1 ultimately. If they make you feel bad you can always quit them. If they are tolerable....perhaps you won't have the cancer again???? There are so many tough decisions to make at a time when you are least emotionally able to make them, so hugs to you.

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When you say the Letrozole was better than the Arimidex, what specifically are you referring to with regard to side effects?

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francine6829 | @francine6829 | Mar 12, 2019

Is anyone taking any of the estrogen inhibitors with ZERO or very minimal side effects?

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trixie1313 | @trixie1313 | Mar 12, 2019
In reply to @buckimom "My husband hasn’t been very patient either. Doesn’t like disruption to his routine. I’m 74 and..." + (show)
@buckimom

My husband hasn’t been very patient either. Doesn’t like disruption to his routine. I’m 74 and married 40 some years (can’t remember 😳) & felt quite comfortable telling him to get used to it; I have at least 4 years to go, lol. I feel so fortunate to have found this forum and wish all of us the very best.

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Hoping things go better with your husband...sometimes they need a little direction. Do you go to any cancer support meetings? If so, can you take him with you - he may get a better understanding. My hubby used to get frustrated with me while in my 40s I underwent surgical menopause and the hot flashes and sweats were abysmal for years then a few years ago he went through prostate cancer and had to have female hormones prior to treatment...he learned real fast what I had been going undergoing and became more understanding after that...when he forgets, I remind him!

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1 reply
buckimom | @buckimom | Mar 12, 2019
In reply to @trixie1313 "Hoping things go better with your husband...sometimes they need a little direction. Do you go to..." + (show)
@trixie1313

Hoping things go better with your husband...sometimes they need a little direction. Do you go to any cancer support meetings? If so, can you take him with you - he may get a better understanding. My hubby used to get frustrated with me while in my 40s I underwent surgical menopause and the hot flashes and sweats were abysmal for years then a few years ago he went through prostate cancer and had to have female hormones prior to treatment...he learned real fast what I had been going undergoing and became more understanding after that...when he forgets, I remind him!

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@trixie1313 -Hi Trixie, I have a fabulous daughter (whose twin brother died of cancer at age 15) is a Director of clinical cancer trials for a large company. She put hubby on “a need to know basis” and is a wonderful partner! My husband is who he is and I’m okay with that. He does what ever I ask. It’s all working😊

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1 reply
trixie1313 | @trixie1313 | Mar 12, 2019
In reply to @buckimom "@trixie1313 -Hi Trixie, I have a fabulous daughter (whose twin brother died of cancer at age..." + (show)
@buckimom

@trixie1313 -Hi Trixie, I have a fabulous daughter (whose twin brother died of cancer at age 15) is a Director of clinical cancer trials for a large company. She put hubby on “a need to know basis” and is a wonderful partner! My husband is who he is and I’m okay with that. He does what ever I ask. It’s all working😊

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So very sorry for the loss of your son. Perhaps that's why your husband has trouble understanding what you are going through - could be he is so very frightened he will lose you and is protecting his emotions. All the best to you.

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