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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@shelleyc

@crazydaisy I also did not take anything. I had stage 0 dcis with clear margins. I did 20 rounds of radiation with a lot of side effects that they said were not usual. I have had enough of the side effect thing. I agree with the quality of life argument. If I had a different type of breast cancer or an advanced stage I would probably consider it, but I have a good friend who is 17 years out, did not take anything, and is cancer free. I have another friend who is 6 years out with no cancer, so I am going to hope for the best and move on. I have already decided that if I get cancer again I will have a mastectomy so with that plan in mind I can move on.

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I think I would also do the same. I don’t think I will survive the treatment and surgery would be the best choice for me. Who cares about saving your breast

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@eku

Ditto on these books.

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You can add to those EXCELLENT books, "Radical Hope" The opening dedication is: "To anyone who has ever felt fear, when what they needed most was hope." The work is an expansion on Dr. Turner's first book "Radical Remission"

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@tenayalake86

I started to write back to you, and somehow must have erased the reply in the process of finding online references. I believe there are some therapies for bone loss [Fosamax?} but none for cognitive decline. I will say that there are various 'camps' online...some saying no effect on cognitive ability and some saying the opposite, especially from 12 to 18 months after starting AI.. I've tried to concentrate on .edu and other well-known, reliable sources.
I don't know how cognitive decline is measured, and I don't know if I'd notice it myself, either in others or myself. Some studies have put forth the idea that the stress of the diagnosis may contribute. There's a catch-22!. I'm still up in the air and I need to discuss this further with my dr. It's not my purpose to persuade or dissuade you; I'm just interested in hearing various points of view. Thanks for sharing yours.

Here's another reference to memory loss from https://acsjournals.onlinelibrary.wiley.com/doi/pdfdirect/10.1002/cncr.29393:

"...Twelve to 18 Months After Anastrozole Initiation
However, from 12 to 18 months, the anastrozole-alone
group again exhibited a decline in working memory and a
trend toward a deterioration in concentration...."

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Thanks for the link and your comment. I stopped anastrozole after one morning last week when I had trouble getting out of bed and walking. Joint aches are a known side effect but this was scary. The joint stiffness did largely go away in a day or two. I called the onco's office. Was told to stop the med until I see him in mid-March. I also am having trouble being constantly hungry. I was told it was weight-neutral but not so in my case.
Sorry if I'm repeating myself: I also have high anxiety, depression, and trouble sleeping. My body seems to take time to rid itself of the AI. Cognitive decline/memory loss is indeed hard to assess. I don't know whether what I have is normal aging or not. I will check out the link you provided. Thanks.

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@tenayalake86

Thanks for the link and your comment. I stopped anastrozole after one morning last week when I had trouble getting out of bed and walking. Joint aches are a known side effect but this was scary. The joint stiffness did largely go away in a day or two. I called the onco's office. Was told to stop the med until I see him in mid-March. I also am having trouble being constantly hungry. I was told it was weight-neutral but not so in my case.
Sorry if I'm repeating myself: I also have high anxiety, depression, and trouble sleeping. My body seems to take time to rid itself of the AI. Cognitive decline/memory loss is indeed hard to assess. I don't know whether what I have is normal aging or not. I will check out the link you provided. Thanks.

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Hi Tenya:

I take 6 mg of melatonin.
That may help.

I was supposed to take anastrole before my surgery as my surgery got canceled as I got Covid.

I could only take one tablet and had to discontinue. I took one at 11 pm and had tingling in both legs both above and below the knees and then both knees gave out 30 minutes after I took it.
The next morning, my pulse was 152. Oncologist said to stop.

Now, after radiation, I am supposed to start Letrozole I March....

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@timely

Hi Tenya:

I take 6 mg of melatonin.
That may help.

I was supposed to take anastrole before my surgery as my surgery got canceled as I got Covid.

I could only take one tablet and had to discontinue. I took one at 11 pm and had tingling in both legs both above and below the knees and then both knees gave out 30 minutes after I took it.
The next morning, my pulse was 152. Oncologist said to stop.

Now, after radiation, I am supposed to start Letrozole I March....

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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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@lluna57

@cindylb, I also had ALL of the side effects. When the doctor started telling me about the side effects, I didn't really listen, because I have never had side effects from any drug I have taken. About a week after starting them, I was trying to get out of bed and noticed my fingers were really stiff, and then remembered him saying something about that. In week 2, it got worse, much worse and it has continued on since. I am trying 3 weeks on and 1 week off, and hoping that each time I start it again, some of the SE will dissipate. My main concern is with the lasting effects on my joints. I understand bone loss is a given, but I am wondering if, after I stop taking it, will my joints be OK. Luckily, I had great bone density, and never had a joint issue to speak of, now however, when I finish these meds (at my time to retire), am I going to be able to resume all of my activities.

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How are you today, Feb 2023? I also am debating on taking The A medicine, but react to all medicine and will need to have it compounded.
Thank you

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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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Hi Tenaya,
Just wondering about what you mention about women after 70 not getting much protection with radiation? I had radiation at 68 for my IDC but had a local recurrence 7 months ago in the lumpectomy scar tissue. Are there studies that show that women in this age group don't benefit from radiation? Just wondering if that might explain why it certainly didn't help in my case!

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First let me say I am sorry to hear you had a recurrence. That's every woman's fear.
My research was a while ago, probably last June or July. My onco agreed with me that I would not benefit much, but I can't remember where I read it. I'm sorry. I will look through my bookmarks; maybe I'll find a link.

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This is not the link I had in mind, but it's similar. I may have assumed at the time that I would be able to take anastrozole. Maybe my oncologist's answer was based on my taking anastrozole. I will see him in a couple of weeks. I am off the med now, since I phoned in the last serious side effect. I will know more and share after my next visit.

https://www.breastcancer.org/research-news/65-plus-w-early-hr-pos-may-be-able-to-skip-rads
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@bjjoyce1

How are you today, Feb 2023? I also am debating on taking The A medicine, but react to all medicine and will need to have it compounded.
Thank you

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What is compounding?

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