1. < Breast Cancer

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.

callalloo | @callalloo | Apr 14, 2022
In reply to @pbnew "These are tough decisions for everyone. Are there any folks in this thread who are taking..." + (show)
@pbnew

These are tough decisions for everyone. Are there any folks in this thread who are taking an aromatase inhibitor as the only form of medical treatment with or without surgery? I’m on Letrozole and Ribociclib. I want todump Rebociclib . I’ve had no surgery.

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That's a new one on me. Do you have a tumor which the oncologist is just treating with drugs? Or is there a tumor which they are hoping to reduce in size to .after remove surgically? And, yep, cancer treatment decisions are tough. I don't know what I would have done without the genetic testing, but it gave two oncologists and me a feeling that we had wiggle room which helped a lot.

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callalloo | @callalloo | Apr 14, 2022

I thought this might be of interest since many people taking aromatase inhibitors are also taking drugs for osteoporosis. An article in the Journal of Bone and Mineral Research cites a study about Prolia v. bisphosphonates with regard to osteonecrosis of the jaw. A doctor commented below the article suggesting that osteonecrosis is a misnomer. If medicine is misdiagnosing it, maybe there's a treatment for it?
*********************************
Risk for osteonecrosis of the jaw higher with denosumab vs. bisphosphonates

Perspective from Nelson Watts, MD, FACP, MACE,

Adults with osteoporosis have a higher risk for developing osteonecrosis of the jaw with denosumab therapy compared with bisphosphonates, according to study findings published in the Journal of Bone and Mineral Research

Then Dr. Watts notes:

"I believe that the term “osteonecrosis” is incorrect. If the bone gets infected, it is osteomyelitis and necrotic. Nuclear medicine scans of exposed bone in non-infected patients with “osteonecrosis of the jaw” show increased uptake. “Necrosis” implies “dead bone,” which should not be taking up radioisotope."

https://www.healio.com/news/endocrinology/20220329/risk-for-osteonecrosis-of-the-jaw-higher-with-denosumab-vs-bisphosphonates
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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 14, 2022
In reply to @callalloo "I give up typing forever! "Banana' should read "by any". I'm afraid to look for any..." + (show)
@callalloo

I give up typing forever! "Banana' should read "by any". I'm afraid to look for any other typos. Is there a way to edit text once submitted? Or can I blame the tiny window the software allows for viewing text? It's 0.5" tall on my 10" tablet. Just sayin' ...

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Callalloo, I corrected the auto-correct spelling error for you. You have a 30-minute window to edit your own text. The tiny window to compose message is annoyingly small and the text too tiny. Our tech team will be expanding the window and increasing the font. Look for that improvement in the coming days.

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1 reply
callalloo | @callalloo | Apr 14, 2022
In reply to @colleenyoung "Callalloo, I corrected the auto-correct spelling error for you. You have a 30-minute window to edit..." + (show)
@colleenyoung

Callalloo, I corrected the auto-correct spelling error for you. You have a 30-minute window to edit your own text. The tiny window to compose message is annoyingly small and the text too tiny. Our tech team will be expanding the window and increasing the font. Look for that improvement in the coming days.

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Thank you very much, Colleen. The phrase 'banana chance' was too weird, lol.

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jaynep | @jaynep | Apr 15, 2022
In reply to @callalloo "Did you by any chance have genetic testing that could give you an idea of risk..." + (show)
@callalloo

Did you by any chance have genetic testing that could give you an idea of risk of likely recurrence? A post-surgical biopsy yields the information as to whether there were clean, sufficiently-wide margins. If you weren't given a copy, you can ask for it. With a lumpectomy that recent, they can likely still submit the tissue for testing. Mine was submitted by my oncologist and I didn't see him until 8 days after surgery.

I'd probably consider getting a second opinion entirely from a different oncologist.. And, if I needed more surgery, get a second opinion on that too.

As to the post-surgery adjuvant anti-hormone drugs, many people have few side effects and tolerate them. With the caveat that the aromatase inhibitors will effect the rate of bone loss. And you might want to pay special attention to that and have a baseline DEXASCAN before starting them. They might have no negative effect on the spinal fusion.

I wish that more patients with breast cancer were offered the genetic testing. Size, location and stage of tumor are data points. Adding the data derived from an analysis of that unique person's genes is a very valuable data point as well. It helped my oncologist and endocrinologist (and me) feel OK with my decisions re: radiation and drugs.

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Are you referring to genetic testing or the oncotype dx test? We’re waiting for the oncotype test results to come back. Thanks for your reply. I appreciate it.

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1 reply
windyshores | @windyshores | Apr 15, 2022
In reply to @pbnew "These are tough decisions for everyone. Are there any folks in this thread who are taking..." + (show)
@pbnew

These are tough decisions for everyone. Are there any folks in this thread who are taking an aromatase inhibitor as the only form of medical treatment with or without surgery? I’m on Letrozole and Ribociclib. I want todump Rebociclib . I’ve had no surgery.

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@pbnew are you stage 4? Kisqali (ribocicib) is usually used for metastatic cancer.

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1 reply
pbnew | @pbnew | Apr 15, 2022
In reply to @windyshores "@pbnew are you stage 4? Kisqali (ribocicib) is usually used for metastatic cancer." + (show)
@windyshores

@pbnew are you stage 4? Kisqali (ribocicib) is usually used for metastatic cancer.

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Yes metastasis to some bones.

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1 reply
eku | @eku | Apr 15, 2022
In reply to @pbnew "These are tough decisions for everyone. Are there any folks in this thread who are taking..." + (show)
@pbnew

These are tough decisions for everyone. Are there any folks in this thread who are taking an aromatase inhibitor as the only form of medical treatment with or without surgery? I’m on Letrozole and Ribociclib. I want todump Rebociclib . I’ve had no surgery.

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@pbnew I have MBC (mets to bones), no surgery. I am on anastrozole + Verzenio.

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1 reply
pbnew | @pbnew | Apr 15, 2022
In reply to @eku "@pbnew I have MBC (mets to bones), no surgery. I am on anastrozole + Verzenio." + (show)
@eku

@pbnew I have MBC (mets to bones), no surgery. I am on anastrozole + Verzenio.

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How long have you been on Verzenio? What kind of side effects? Thanks.

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1 reply
eku | @eku | Apr 15, 2022
In reply to @pbnew "How long have you been on Verzenio? What kind of side effects? Thanks." + (show)
@pbnew

How long have you been on Verzenio? What kind of side effects? Thanks.

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3 months. I had diarrhea at the beginning -which is very common but it went away after about a month. I space them out by 1 hour, I think that helped.

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