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 callalloo @callalloo

"The bone issues can be addressed with biphosphonates or Prolia during treatment with aromatase inhibitors, and have an added protective benefit for cancer."

I just want to clarify if you mean that bisphosponafes or Prolia can offer any protective benefit against cancer as I'd not read that anywhere yet and would like to know it for future reference. I know that the makers of Evista, a SERM, made some claims about breast cancer prevention benefits that the FDA sued them over and that Evista can possibly help with bone cancer but hadn't seen any cancer-related benefits for bisphisphonates or the monoclonal antibodies. I'm not taking any of them but want to be well-informed ahead of time if it becomes becessary. Thanks!

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Biphosphonates prevent skeletal events fractures, osteoporotic complications, and address bone pain with metastasis to bone. That much is certain.

When I was treated in 2015 all the docs said that Reclast (the specific one) might help prevent spread, by affecting osteoclasts. Studies were mixed, but here is one done in 2014 including Reclast, that found protection against recurrence for those who took Reclast with an AI right after surgery, who were hormone positive, and post-menopause. (These were the folks in the study.)

I found one study that said Zometa plus Femara reduced risk of recurrence by 30%. I also read a study some time ago that said all cancer was eliminated with the same combo.
Here is the first one mentioned: https://www.breastcancer.org/research-news/20140128

I honestly think they don't really know but there are signs pointing to that effect. The mechanism would be by stopping bone turnover via osteoblasts (which worries me on Tymlos, and Tymlos is not a good idea if you have bone metastases!).

I like to write precisely and would add "may" have protective effect. But I would also clarify they definitely have a protective effect on bones with cancer- better wording is "with" not "for" unless some of those studies are on target.

I think anyone considering this med should ask their oncologist for the latest research on this.

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Profile picture for windyshores @windyshores

Severe bone loss may not occur on aromatase inhibitors. It depends on starting point and rate of bone loss for an individual. I had a drop in bone density when I started, but the rate levelled off after the first year. I started off with osteoporosis and after five years had no fractures, even without bone meds.

The bone issues can be addressed with biphosphonates or Prolia during treatment with aromatase inhibitors, and have an added protective benefit for cancer. If a person cannot tolerate those, then Forteo, Tymlos and Evenity are options to grow bone back.

This decision will also depend on ER+ status, other pathology and Oncotype or Mammaprint scores. For many of us, the decision to take hormonal meds was easy and we dealt with bone issues if they arose, because cancer is life-threatening if it spreads.

Tamoxifen is another option for those concerned about bones, since it does not cause a decline in bone density and may even help with bones, since SERMS like Evista are used for osteoporosis. Here is one study:

"In the women given tamoxifen, the mean bone mineral density of the lumbar spine increased by 0.61 percent per year, whereas in those given placebo it decreased by 1.00 percent per year (P<0.001). Radial bone mineral density decreased to the same extent in both groups."

I did not experience any significant side effects from an aromatase inhibitor, nor did any of my friends. My only suggestion, validated by my oncologist, is to exercise more than 20 minutes: the pain goes away if you exercise longer.

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"The bone issues can be addressed with biphosphonates or Prolia during treatment with aromatase inhibitors, and have an added protective benefit for cancer."

I just want to clarify if you mean that bisphosponafes or Prolia can offer any protective benefit against cancer as I'd not read that anywhere yet and would like to know it for future reference. I know that the makers of Evista, a SERM, made some claims about breast cancer prevention benefits that the FDA sued them over and that Evista can possibly help with bone cancer but hadn't seen any cancer-related benefits for bisphisphonates or the monoclonal antibodies. I'm not taking any of them but want to be well-informed ahead of time if it becomes becessary. Thanks!

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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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I also hope to make it through to 2.5 - 3 years if I can on anastozole/Armidex. Given the higher percentage of new primary cancer for those of us who already have the BC, it seems very worth the try. So even if our current BC has been "cured" by surgery and radiation, which for most of us who are early stage it has, the estrogen blocker will lower the risk of a new unrelated occurrence. What AI are you on, and what does your oncologist say about taking half the dose--every other day or splitting? Does it relieve the SEs at all?

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In reply to @magmcdonah2 "Thanks for the tip" + (show)
Profile picture for magmcdonah2 @magmcdonah2

Thanks for the tip

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You're welcome. Hope it is helpful for you.

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Profile picture for Dee Chase @deechase

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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Thanks for the tip

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Profile picture for Colleen Young, Connect Director @colleenyoung

@jaynep, wishing you all the best for your upcoming surgery. You might find some tips helpful in these related discussions:
- Advice on Taking Care of a Spouse after a Mastectomy https://connect.mayoclinic.org/discussion/advice-on-taking-care-of-a-spouse-after-a-mastectomy/ (I know you're having a lumpectomy, but there's still some good stuff here.
- Exercise and Physical Activity after Breast Cancer Surgery https://connect.mayoclinic.org/discussion/exercise-and-physical-activity-after-breast-cancer-surgery/

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Thank you.

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Profile picture for lcr2017 @lcr2017

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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Love this: " You can choose to stop it unlike the cancer. "

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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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@jaynep, wishing you all the best for your upcoming surgery. You might find some tips helpful in these related discussions:
- Advice on Taking Care of a Spouse after a Mastectomy https://connect.mayoclinic.org/discussion/advice-on-taking-care-of-a-spouse-after-a-mastectomy/ (I know you're having a lumpectomy, but there's still some good stuff here.
- Exercise and Physical Activity after Breast Cancer Surgery https://connect.mayoclinic.org/discussion/exercise-and-physical-activity-after-breast-cancer-surgery/

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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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PS: I work for a national healthcare non profit and I write medical research grants so I'm not totally ignorant to how pharma rolls out their clinical trials, which we fill for another disease state. It is a long process.

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Thinking of tedious chores as somehow physical therapy or bone-renewal stimulating helps, doesn't it 🤔 <smile>?

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