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.

@orsejr

I have not chosen to take AI or tamoxifen because I couldn’t tolerate the tamoxifen and I have osteoporosis so not eligible for AI unless I take Zometa with it. My Oncotype was 14. IDC estrogen +, 15 mm, negative nodes and grade 2. I am told grade doesn’t really matter anymore unless grade 3. Doctors are relying more on Oncotype score. I have 8% chance of recurrence without endocrine therapy . I was diagnosed at age 67. I am almost 69. I am involved with Signatera . Look it up.

Jump to this post

Would love to hear more about Signatera… looking to get blood draw end of month. No one has been able to talk to me about cost!!! What is your experience with Signatera.?

REPLY

I had my blood drawn at my oncologists office a couple of weeks ago. I had to inform her about it. It is covered by Medicare . Did you look at Signatera website ? I heard about this on a TV talk show. The website explains how this test is done. Will meet with her in a couple of months to discuss results.

REPLY
@orsejr

I had my blood drawn at my oncologists office a couple of weeks ago. I had to inform her about it. It is covered by Medicare . Did you look at Signatera website ? I heard about this on a TV talk show. The website explains how this test is done. Will meet with her in a couple of months to discuss results.

Jump to this post

My oncologist recommended it. I’ve read about it also. I think it’s the way of the future but may, at this point, offer some confusion about what to do when. I’m open to a clinical trial if there is one. I will have a draw at the end of March ( same health center that has my stored tissue). Did not know Medicare would pay. Good to know. Thank you 🙏 Blessings on the path. 🌸

REPLY
@anjalima

I had two right breast tumors; 99% ER +, 98%PR+, HER2-, stage 2 IDC. Had unilateral mastectomy , no chemo recommended as a very favorable ONCOTYPE, and opted out of radiation ( which seemed scary to me) . Also breast surgeons did not see big value in my case. Doing annual MRI and Mammo at 6 months intervals. Both negative one year out from first (mastectomy ) surgery.

On AI for 11 months, mild joint discomfort worked out with walking, stretching, yoga and resistance ( for bones). Very effective and helpful… don’t even need Tylenol… but I worried about the unseen(felt) side effects.

Mitigation is my game!

BONE HEALTH: D3, K2, multi, curcumin 95, C, and absorbable food based calcium ( for bones) niacin ( for cholesterol). Try to hit 1000 grams of calcium from food plus from 200 multi-Vit. Biotin for some hair thinning.

Did DEXA last week and essentially no change from baseline 3 years ago and pre AI last April. One hip improved .1, one hip decreased .1, L4 lost .1 ( all statistically insignificant). I do consult with endocrinologist as part of mitigation team.

HEART HEALTH :Cholesterol slightly elevated but so was HDL so good ratio remained the same .
Red meat 1-2x month ( maybe), and almost ZERO processed food. Sodium is a bone killer.

Had a calcium score done to make sure plaque not building up. Result :ZERO! Shocked and relieved. ( I thank K2 for this )

Bottom Line: NOT everyone has a significantly difficult reaction ( response) to AI. If it may be beneficial why not try… it is a daily oral pill which has a 50 hour half life that can be stopped at any moment.

I feel safer on this med; I envision it as a daily protection against breast cancer.

I realize that my experience with side effects are mild and tolerable and that’s not the case for some, but it may be worth trying.

Blessings on the path. 🌸

Jump to this post

Can you explain about the calcium score? Is this because your cholesterol went up. Mine has gone up but I wonder if it is because I haven't watched my diet over the last couple of months.

REPLY
@debbie2721

Can you explain about the calcium score? Is this because your cholesterol went up. Mine has gone up but I wonder if it is because I haven't watched my diet over the last couple of months.

Jump to this post

Calcium score is a prognostic indicator of arterial health ( current level of plaque build up). It’s a low power CT. One could have an elevated cholesterol but not necessarily have arterial plaque build up … in my case it was zero so doc not concerned about my cholesterol level.
I do pay attention to nutrition and cholesterol .

Hope this helps!

REPLY
@debbie2721

Can you explain about the calcium score? Is this because your cholesterol went up. Mine has gone up but I wonder if it is because I haven't watched my diet over the last couple of months.

Jump to this post

Cholesterol goes up with Leterozole as does triglycerides.

REPLY
@timely

Cholesterol goes up with Leterozole as does triglycerides.

Jump to this post

My triglycerides did go up with Anastrozole. Working on this now.

REPLY
@windyshores

@beet8881 have you considered the Breast Cancer Index test? It uses your post surgical specimens to test your risk of recurrence and whether there is benefit to extended therapy with aromatase inhibitors. The test is done after 5 years of meds. Mine said high risk but not further benefit so I stopped letrozole.

My doc didn't know about it even though it is in the NCCN guidelines. I called the BCI company and got the paperwork and took it to my doc.

Jump to this post

Thanks. I have not heard of BCI. Sounds like a good idea. I have an appointment with my (new) 7th Oncologist in April and will ask.

REPLY
@anjalima

I had two right breast tumors; 99% ER +, 98%PR+, HER2-, stage 2 IDC. Had unilateral mastectomy , no chemo recommended as a very favorable ONCOTYPE, and opted out of radiation ( which seemed scary to me) . Also breast surgeons did not see big value in my case. Doing annual MRI and Mammo at 6 months intervals. Both negative one year out from first (mastectomy ) surgery.

On AI for 11 months, mild joint discomfort worked out with walking, stretching, yoga and resistance ( for bones). Very effective and helpful… don’t even need Tylenol… but I worried about the unseen(felt) side effects.

Mitigation is my game!

BONE HEALTH: D3, K2, multi, curcumin 95, C, and absorbable food based calcium ( for bones) niacin ( for cholesterol). Try to hit 1000 grams of calcium from food plus from 200 multi-Vit. Biotin for some hair thinning.

Did DEXA last week and essentially no change from baseline 3 years ago and pre AI last April. One hip improved .1, one hip decreased .1, L4 lost .1 ( all statistically insignificant). I do consult with endocrinologist as part of mitigation team.

HEART HEALTH :Cholesterol slightly elevated but so was HDL so good ratio remained the same .
Red meat 1-2x month ( maybe), and almost ZERO processed food. Sodium is a bone killer.

Had a calcium score done to make sure plaque not building up. Result :ZERO! Shocked and relieved. ( I thank K2 for this )

Bottom Line: NOT everyone has a significantly difficult reaction ( response) to AI. If it may be beneficial why not try… it is a daily oral pill which has a 50 hour half life that can be stopped at any moment.

I feel safer on this med; I envision it as a daily protection against breast cancer.

I realize that my experience with side effects are mild and tolerable and that’s not the case for some, but it may be worth trying.

Blessings on the path. 🌸

Jump to this post

Hi anjalima:

You are doing so well. May I ask your age and whether you had any cardiac problems to start with? Both may have effects on others in ability to do all the exercise you are able to do.

REPLY
@anjalima

Calcium score is a prognostic indicator of arterial health ( current level of plaque build up). It’s a low power CT. One could have an elevated cholesterol but not necessarily have arterial plaque build up … in my case it was zero so doc not concerned about my cholesterol level.
I do pay attention to nutrition and cholesterol .

Hope this helps!

Jump to this post

Is this a special test you asked your doctor to do? I appreciate the reply.

REPLY
Please sign in or register to post a reply.