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 wyngnit @wyngnit

Thanks for clarifying tamoxifen is usually not recommended for post menopause. It has a different used by the body

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Not true. My sister is 71 and has rheumatoid arthritis and has to take tamoxifen. When I had tried all 3 aromatase inhibitors, I was asked to try tamoxifen. My oncologist says it isnt as strong but will work the same. At one time, everyone took it.

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Profile picture for cctoo. Catherine Crowley @cctoo

Saucy, you can take Evista....prevents breast cancer and straightens bones....no side effects at all!!! Dr. can prescribe it. Tamoxifen is generic name...ask oncologist. I had cancer and take it.

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Thanks for clarifying tamoxifen is usually not recommended for post menopause. It has a different used by the body

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Profile picture for elizm @elizm

@jeaniebean Pharmaceuticals are tricky. Since going on an AI in January 2018, I lost about 25 lbs. in two years without dieting or increasing exercise... then my weight leveled off during the pandemic SIP business when exercise time plummeted with the close of my gym. I was not unhappy with the weight loss, but it alarmed my oncologist at first. At my age, it likely has more to do with loss of muscle mass than fat loss... but nonetheless, you never know how your body will react to an AI until you go on one.

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How soon afte AI do symptoms appear? Anyone have info? I am at 2.5 months with so muscle aches especially at night

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Profile picture for mjay @mjay

Thanks for your reply. I can so relate. I'm 64 now. Husband is ok but sometimes loses patience...."Oh, go back. I forgot my list"! I will see how it goes as I don't know how much of my depression/brain fog is cancer fear and/or Covid fear! Life did hand us a curveball this past year! I'm due for the Covid vaccine soon so hopefully that will give me a little mental break. Other than the brain fog, worse at some times than others, and tight finger joints upon waking, I don't have many other side effects, at least not that I know of now, thank God. I'm just worried since I have some genetic links to dementia that AI's may exacerbate it and memory won't come back fully after discontinuing. It would be interesting to know if anyone did the 5-year course of AI with brain fog/memory issues and how they fared after discontinuing, i.e., did the brain fog lift or were they permanently impaired. Thank you all for sharing your insight and experience.

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@mjay
You raise some interesting questions which I don't believe have been addressed in this forum to my knowledge. For those who completed 5-10 years of an AI, did they experience withdrawal symptoms? If so, what were they and for how long? And, did the symptoms of arthralgia experienced while on an AI go away following withdrawal after 5-10 years?

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Profile picture for lisman1408 @lisman1408

Mjay, I’m so sorry that Armidex (Anastrozole is the generic name), caused memory loss/brain fog. I started off with anastrozole as my first AI after surgery and radiation. I has horrible memory loss/brain fog while taking that also. I thought I was sliding into dementia at 64 years of age. I was really frightened by that side affect. Plus my husband would make fun of me for not being able to remember the simplest things. It was AWFUL!! It was this web site when I started reading it, that tipped me off to the possibility that it was the meds causing brain fog, not any problem with my brain itself. My doctor switched my meds. and the brain fog went away. I’m currently taking Exemestane and that’s better for me-but not like the good old days before breast cancer reared it’s ugly head in my life. I so grateful for reading other women’s symptoms, problems, and issues that they have had through this journey. Thank you to each of you posting on this sight!! I don’t know what I’d do without each of you!

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Thanks for your reply. I can so relate. I'm 64 now. Husband is ok but sometimes loses patience...."Oh, go back. I forgot my list"! I will see how it goes as I don't know how much of my depression/brain fog is cancer fear and/or Covid fear! Life did hand us a curveball this past year! I'm due for the Covid vaccine soon so hopefully that will give me a little mental break. Other than the brain fog, worse at some times than others, and tight finger joints upon waking, I don't have many other side effects, at least not that I know of now, thank God. I'm just worried since I have some genetic links to dementia that AI's may exacerbate it and memory won't come back fully after discontinuing. It would be interesting to know if anyone did the 5-year course of AI with brain fog/memory issues and how they fared after discontinuing, i.e., did the brain fog lift or were they permanently impaired. Thank you all for sharing your insight and experience.

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Thank you, I hope your procedure is very successful.

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Profile picture for junec @junec

Sorry it's been 2 months since I first signed up and asked about AI's. Yes I've been taking letrozole for 2mths. Found a Breast cancer doctor that specializes in metastatic bc and he talked me into taking abemaciclib 150mg, took for a month and got progressively more and more tired, diarrhea felt horrible. The dose was lowered to 100mg a month ago and I feel much better. Am also getting zoledronic acid infusion 1x month as the bc stage 4 has spread to my bones. Unfortunately, I've become anemic and my white cell count is getting lower. But I feel grateful to be where I'm at. I do have a question... has anyone received the vaccine while on meds, I'm due to get my first dose Thursday and nervous about it being too much for my system to take. Thank you.

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@junec I get my first covid injection on Saturday. So far, I'm hearing that the first dose is uneventful, but that the second dose can give some people flu-like symptoms. I also learned that the CDC recently altered its recommendations on the timing of the second dose -- that second doses of the Moderna and Pfizer vaccines can be given up to six weeks after the first. This is good news for many of us. For example, I have a difficult surgical procedure coming up ap. three weeks after my first dose, and, under the circumstances, will be grateful to postpose the second dose for another two weeks, giving my body more recovery time.

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Profile picture for mjay @mjay

Thank you for your reply. I do not have info on natural alternatives but thought someone might. I am currently on Arimidex and am experiencing brain fog/memory issues. I am investigating my options at this point. Maybe eating more phytoestrogens while taking AIs can help supplement with some estrogen which is needed to maintain some modicum of health. It would be good to know if this is being investigated or trialed.

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Mjay, I’m so sorry that Armidex (Anastrozole is the generic name), caused memory loss/brain fog. I started off with anastrozole as my first AI after surgery and radiation. I has horrible memory loss/brain fog while taking that also. I thought I was sliding into dementia at 64 years of age. I was really frightened by that side affect. Plus my husband would make fun of me for not being able to remember the simplest things. It was AWFUL!! It was this web site when I started reading it, that tipped me off to the possibility that it was the meds causing brain fog, not any problem with my brain itself. My doctor switched my meds. and the brain fog went away. I’m currently taking Exemestane and that’s better for me-but not like the good old days before breast cancer reared it’s ugly head in my life. I so grateful for reading other women’s symptoms, problems, and issues that they have had through this journey. Thank you to each of you posting on this sight!! I don’t know what I’d do without each of you!

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Sorry it's been 2 months since I first signed up and asked about AI's. Yes I've been taking letrozole for 2mths. Found a Breast cancer doctor that specializes in metastatic bc and he talked me into taking abemaciclib 150mg, took for a month and got progressively more and more tired, diarrhea felt horrible. The dose was lowered to 100mg a month ago and I feel much better. Am also getting zoledronic acid infusion 1x month as the bc stage 4 has spread to my bones. Unfortunately, I've become anemic and my white cell count is getting lower. But I feel grateful to be where I'm at. I do have a question... has anyone received the vaccine while on meds, I'm due to get my first dose Thursday and nervous about it being too much for my system to take. Thank you.

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Profile picture for sessooner @sessooner

I appreciate your input. I face surgery in two weeks and know I will be facing these meds for 5 years following radiation. I have been disheartened by the posts about the side effects. While it is good to know about side effects, I also have to remind myself that we are all more likely to post if we are having a bad experience. While my heart goes out to everyone facing these horrible side effects, it is encouraging to know that not everyone experiences them.

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I've read that about 60% of women have no side effects on AI's. Of course they do not post - if they are having no problems. I personally met some women at a breast cancer luncheon that were at the 5 year mark - so they were going to stop taking it. They had had NO side effects at all. So you really do not know unless you try the drugs. I took anastrozole for 1 year but my Hands hurt so much - there was no way I was going to hit the 5 yr mark, let alone 10 years. I was switched to Exemestane, which is SO much better - I think I can go the full 5 years now. I still have hot flashes and insomnia I started taking CALM for the insomnia, it really works!! I use the gummies. Good luck in the decision you have to make. We all make our own choices. Get all the information you need - but you may not have any side effects.

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