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.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Profile picture for callalloo @callalloo

The osteoporosis topic threads here are also very worthwhile. There is some comparing of supplements that people have found valuable in addition to the standard calcium/D3/K2 recommendations. Some are taking collagen, yet alone 5 kinds (about which I know zip). And a few have added boron to their protocol. I think the coolest thing though is the writers here using vibratory therapy. And it sounds like fun to me too, lol. I'll do anything to not have to watch my inner scaffolding become untrustworthy. I now think of grocery-lugging as weight bearing exercise and resent it less.

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You know I'm going to think of grocery lugging as weight bearing...and because I live in South Dakota for now, I'll consider the brisk winds blowing into my chest as resistance training. 🙂

I made an appointment for a Functional Dr. Calcium is on the list!

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Profile picture for Colleen Young, Connect Director @colleenyoung

@katehanni and @eku, I see you have questions about the much publicized scientific breakthrough made at the University of Illinois, which was subsequently licensed by Bayer Pharmaceuticals in 2020. Early studies in mice seemed to show remarkable promise that led Bayer to invest $25 million exclusive global license agreement. Unfortunately, further trials in mice demonstrated that the promise was premature.

In a statement Bayer wrote in part: “Following a thorough assessment of ERSO in preclinical studies, Bayer has decided to discontinue development activities of this program for scientific reasons… we must take prudent steps to ensure the compounds have the potential to provide the therapeutic benefits we are striving to achieve for patients with cancer.”

Is is gut-wrenching when the media gives such hype to promising research discoveries in their very early stages. It can take 12 to 21 years for a drug to go from promise in test tubes to mice to humans to accepted new treatment. Many, many test tub (in vitro) and mice (in vivo) studies never make it to human trials.

I'm afraid that ErSO is one of those instances. The hope out of the hype is that the research has led to new approaches to study. You can read more here:
- Breakthrough metastatic breast cancer treatment hits snag https://www.thedenverchannel.com/news/national/breakthrough-metastatic-breast-cancer-treatment-hits-snag

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Colleen,

Thank you for your fulsome response. I did see that article (I think another Mayo cancer survivor linked me to it) and you're right it's a shame that the hype was out there without substance to back it up (I guess that's what happened)...we all want a cure and it sure sounded plausible in their initial hype reports. Again thank you for responding.

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Profile picture for klarsonopenfields1 @klarsonopenfields1

Thank you. Well said.
Bone loss is a huge concern for me. Unlike you I am going on at a half dose for 2.5 years if I can tolerate the drug. At 62 bone loss is a driver in the decision. Also researching enzymes, supplements that will stop estrogen creation without an AI

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The osteoporosis topic threads here are also very worthwhile. There is some comparing of supplements that people have found valuable in addition to the standard calcium/D3/K2 recommendations. Some are taking collagen, yet alone 5 kinds (about which I know zip). And a few have added boron to their protocol. I think the coolest thing though is the writers here using vibratory therapy. And it sounds like fun to me too, lol. I'll do anything to not have to watch my inner scaffolding become untrustworthy. I now think of grocery-lugging as weight bearing exercise and resent it less.

REPLY

@katehanni and @eku, I see you have questions about the much publicized scientific breakthrough made at the University of Illinois, which was subsequently licensed by Bayer Pharmaceuticals in 2020. Early studies in mice seemed to show remarkable promise that led Bayer to invest $25 million exclusive global license agreement. Unfortunately, further trials in mice demonstrated that the promise was premature.

In a statement Bayer wrote in part: “Following a thorough assessment of ERSO in preclinical studies, Bayer has decided to discontinue development activities of this program for scientific reasons… we must take prudent steps to ensure the compounds have the potential to provide the therapeutic benefits we are striving to achieve for patients with cancer.”

Is is gut-wrenching when the media gives such hype to promising research discoveries in their very early stages. It can take 12 to 21 years for a drug to go from promise in test tubes to mice to humans to accepted new treatment. Many, many test tub (in vitro) and mice (in vivo) studies never make it to human trials.

I'm afraid that ErSO is one of those instances. The hope out of the hype is that the research has led to new approaches to study. You can read more here:
- Breakthrough metastatic breast cancer treatment hits snag https://www.thedenverchannel.com/news/national/breakthrough-metastatic-breast-cancer-treatment-hits-snag

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After 2.5 years I intend to cease the AI because of concerns for heart health, bones, and joints

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After 2.5 years I intend to cease the AI

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Profile picture for callalloo @callalloo

Once one is taking a new drug, or trying a new diet or making any change in one's life, it seems logical to assign that change to any other new changes one notices, but contemporaneous changes are not necessarily cause and affect. All of the complex things that would have happened anyway can, possibly, just be occurring on as they would have anyway. Having said that, I decided not to take aromatase inhibitors but 'could' change my mind. The one thing about taking them is that it's not an irrevocable decision as were radiation and chemo. As would be having anthing injected into the body, with a long, long half-life, which is one of my lines in the sand that I hope never to cross. That stuff can't be undone but one can try the drugs, and as others here have noted, try other brands or even a SERM if the side effects are discomforting. The downside, IF, one has a high risk of recurrence (which science cannot yet promise either way), is the lack of protection during time not on the drug. But that would be mostly offset by getting on it belatedly. My fear was of increasing the rate of bone loss because, honestly, the drug treatments for that condition, look like a Pandora's box of poor options and nasty side effects. And the accelerated bone loss was an absolute, not just 'possible, risk for the aromatase inhibitors as the resulting estrogen depletion is the driver. Thats not a popular statement but I hear from others with the same concern and want them to know others contemplate it too. And I've heard from people here whose oncologists failed to tell them about the bone density risk which is, to me, stunning medical negligence. But the fact is these are complicated decisions and, given others' personal risk choices versus one's own, easily confusing. Being willing to make them suggests an inherent courage that I hope is also reassuring.

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Thank you. Well said.
Bone loss is a huge concern for me. Unlike you I am going on at a half dose for 2.5 years if I can tolerate the drug. At 62 bone loss is a driver in the decision. Also researching enzymes, supplements that will stop estrogen creation without an AI

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Profile picture for magmcdonah2 @magmcdonah2

The surgery was pretty easy and I was scared out of my mind going in as I had never had general anesthesia. I also did 4 weeks of radiation which left my breast tender. But 3 months out it’s pretty normal. I may have been a little fatigued at end of radiation. Not so much that I didn’t break my leg skiing and in combination with Tamoxifen which I felt pretty good on developed a blood clot. So now 5 weeks into Femara. Most noted SE is vaginal dryness. I helped my sister in law through hospice at 61 with similar diagnosis who didn’t take the drugs. So I’m trying to avoid worrying about every side effect. I will be 59 next week. My aunt was 101 this week I want to be like her.

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With regard to the vaginal dryness, my doctor suggested Good Clean Love moisturizing gel. I use it twice a day and it has worked wonders. Maybe give it a try. It is on Amazon and isn't terribly priced. You definitely do not need much. The instructions say to use the applicator, which would mean using way more than you need, so keep that in mind as well.

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Profile picture for jaynep @jaynep

I feel I’m in a similar position as you I’m scheduled for a lumpectomy on Friday, followed by radiation and then anti-hormone meds. I had a spinal fusion nine months ago and a knee replacement two years ago. I”lol be 68 in July. Menopause was horrible for me. I admit, I am very confused and scared.

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The surgery was pretty easy and I was scared out of my mind going in as I had never had general anesthesia. I also did 4 weeks of radiation which left my breast tender. But 3 months out it’s pretty normal. I may have been a little fatigued at end of radiation. Not so much that I didn’t break my leg skiing and in combination with Tamoxifen which I felt pretty good on developed a blood clot. So now 5 weeks into Femara. Most noted SE is vaginal dryness. I helped my sister in law through hospice at 61 with similar diagnosis who didn’t take the drugs. So I’m trying to avoid worrying about every side effect. I will be 59 next week. My aunt was 101 this week I want to be like her.

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I am finishing my 5 years after diagnosis but I had a no choice but double mastectomy DCIS. I agree with @windyshores. I was doing pretty well for the better part of 4 years. I would direct my yoga to where I was feeling pain or aches and it always made a difference. My doctors did prescribe Prolia for bones. Pain has been unrelenting for about the last 8 months so I recently stopped anastozole—only had to take it till end of May. I never fathomed being almost 70 now! My pain could actually be because I am 5 years older! But I am here…my recurrence odds are low, but who knows? Prolia also can cause aches and pains too, so it was a double whammy. I know people older than me who were on anastozole for 10 years and others who stopped after 6 weeks. You can choose to stop it unlike the cancer. Make sure you get a bone density test first. Check your vitamin D and work with an endocrinologist because they are experts about the pain and bones too. Wishing you peaceful decisions.

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