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

Thanks for the tip

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

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@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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@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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@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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@vivi1

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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I started with Arimidex before surgery. No complications. Physician prescribed a drug for muscle spasms after surgery and I had huge SE. Moved to Letrozole. Could not stand, so dizzy. Looking back I felt so out of it. My husband travels all week, kids are at university so I just stumbled around trying to work from home. Going back to Arimidex every other day. The oncologist recommended it. Seeking out hormone and glucose blocking using other methods with a DO who specializes in cancer. Maybe Traditional Chinese Medicine too.
Hope that helps. Best to you.

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Can I ask why the glucose blocking? Is this related to sugar being kind of supporting of some breast cancers or something else? Sugar consumption is the bane of my existence, or at least diet, and I'm trying to eliminate it after seeing some studies relating it to breast cancer.

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@windyshores

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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I agree about asking for the latest research. The range of available drugs for osteoporosis that a study comparing them, done, say 10 years ago, is of very limited vslue.

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@callalloo

I agree about asking for the latest research. The range of available drugs for osteoporosis that a study comparing them, done, say 10 years ago, is of very limited vslue.

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Clearly Prolia and biphosphonates help in preventing bone loss when on aromatase inhibitors (though I did not go on them based on doc's concerns about other conditions). Clearly they are also helpful when dealing with recurrence/spread in terms of preventing pain and fractures. The remaining question is what role they might play in preventing recurrence or spread. If that was found to be true 20 years ago, that research would still be valid unless disproven! I have a copy of one study in a folder somewhere that was pretty convincing, but cannot find it online. I'll post it if I find it.

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Bisphosphonates help in preventing bone loss, to a degree, and resulting in less healthy bone interfering in the renewal cycle, but have a lot of unwelcome side effects or people on these and other threads, and studies, wouldn't be reporting them and warning against them. I have a friend who now has osteonecrosis from years of one of them and in terrible distress. I realize that not everyone wants to know about side effects so post as little about them as I can. But they are fully documented and medical fact and part of any story about a drug's benefits.. Prolia is a target of multple class action suits for failure to adequately report negative side effects. Just one example, several people have posted here, in the threads for osteoporosis, macular degeneration.

Merck knew about the cases of osteonecrosis caused by bisphonate, Fosamax, but tried to cover that up. (From disclosure in one of the many lawsuits about it, one of which includes my friend in its class. There is NO treatment for osteonecrosis, aka dead bone aka crystallized bone so damages will be of zero comfort. And unlikely to even cover the extensive dental and oral surgery costs.)

For those who want early information on drugs' negative side effects,, sometimes the best place to read, early, about side effects is in the financial press. Institutional investors ask really tough questions at security analysts' and shareholders' meetings and frequently have pharmaceutical consultants on staff. They are hard-nosed about seeing any bad side effect coming down the pike, more so, I think, than the FDA. N.B. My professional life includes participating in these investment forums and monitoring sales of company stock by inside management so I am speaking from first-hand experience.

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