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.

This discussion may be worthy of reviving:
- Anyone taking adjuvant bisphosphonates for bone health? https://connect.mayoclinic.org/discussion/adjuvant-bisphosphonates/

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@vivi1

As @windyshores comments, we are all concerned about our bones. That was the reason I first tried tamoxifen. Now I will try the AIs, which are more effective in controlling BC for estrogen + postmenopausal women. First I will see if I can tolerate an AI, then, if I continue with an AI, I will follow my bone scans while doing what I can to maintain my bone density. A woman on another site suggested that her eating 6 dried plums each day was effective during her 5 years on an AI. You bring up important considerations. Our wiggle room is in the choices we finally make at each junction of our treatment.

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Did the woman who ate the dried plums mention why they help or hopefully do? I've read about all the major anti-resorptive drugs and the side effects are worrisome. I'm hoping that healthier diet and post-lockdown return to gym will stave off loss of bone density. My oncologist did ask if people in my immediate family suffered broken bones, wrists, etc., beyond things like sports injuries and the usual childhood stuff as genetics play a part. And stressed any activity that can help one's balance, e.g., yoga or tai chi.

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@windyshores

You might want to do a Breast Cancer Index test which tests the effectiveness of aromatase inhibitors for you. It actually is used to help with the decision whether to continue after 5 years but still it might help you. The various tests, Oncotype Dx, Mammaprint, Breast Cancer Index and Prosigna all seem to have different results for the same individual. I have had all but Mammaprint. Oncotype Dx had me at low risk (lower than you) but the others had me at high risk. However the BCI showed no benefit from AI's, specifically after 5 years but presumably earlier (I completed 5 years of Femara).

I already had osteoporosis when I started Femara and yes it got worse. The first year there was a dip in bone density then bone loss went back to the normal rate. I should have been on a med but for various reasons docs didn't put me on anything for bones. I am now on Tymlos.

The side effects of AI's are overblown by the Internet because people who don't have them tend not to post. I think it is distressing that so many are discouraged. I found that as long as I walked 45 minutes, the joint pain was fine. Clearly reducing estrogen has effects over time. Hot flashes happen at first but for me faded. For me they really were not bad at all.

The BCI folks told me that their test measures things differently from Oncotype. They compared it to counting number of cars versus speed. I do think that the Oncotype is useful in showing that an AI can nearly halve risk. With a low Oncotype that may not seem like a huge benefit but I felt 3% was well worth it, and in fact, the other tests consider lower scores to be high risk.

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I have been on Anastrozle for 6 months and was congratulating myself on lack of significant problems when that all changed 1 month ago. It slowly began with minor dizziness and rapidly accelerated to a doze or many more times a day when I feel as if I will blackout. Occasionally, my heart feel like it is pounding in my chest. I should relate that I am 77 and util My BC diagnosis, was blessed to have great health and was not on any medication. I went to my GP a week ago and requested a Lipid profile. My last was 2 years ago and excellent numbers. No longer; LDDL nearly 250. BP 149 over 99. Seven months ago 130 over 80. For years i have weighed between 102 and 106. Now gaining weight at almost 2 pounds a month. I related to my oncologist my concern about taking this drug. While I did not have heart problem, I related that my son died of a massive heart at age 54; my mother also died in her sleep at age 61, my mother’s brother had his first heart attack at age 39 and the list I gave him goes on. My GP said she could write me a prescription for a statin; however, there is no evidence to suggest at my age it would help. I have an appointment in 2 weeks to receive a heart monitor to wear for 2 days. Results will take 2 weeks. I have not contacted my oncologist. I am thinking of visit a different oncologist, a cardiologist and a doctor of geriatric medicine because my current doc is huge on the med. I forgot to mention having hot flashes, which seem more intense but not more frequent.
My ANCO score is 4 with Anastrozle therapy. From the beginning of taking the drug, I was aware it could cause heart problems in elderly patients with a history of familial heart disease. I am extremely upset that the many years I worked very hard to stay heart healthy have been all for nothing after only 6 months on Anastrozle, if that is indeed the case. There is little study done on this in the aged. Thanks to every one for posting; every comment has been helpful.

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@gillooly

I have been on Anastrozle for 6 months and was congratulating myself on lack of significant problems when that all changed 1 month ago. It slowly began with minor dizziness and rapidly accelerated to a doze or many more times a day when I feel as if I will blackout. Occasionally, my heart feel like it is pounding in my chest. I should relate that I am 77 and util My BC diagnosis, was blessed to have great health and was not on any medication. I went to my GP a week ago and requested a Lipid profile. My last was 2 years ago and excellent numbers. No longer; LDDL nearly 250. BP 149 over 99. Seven months ago 130 over 80. For years i have weighed between 102 and 106. Now gaining weight at almost 2 pounds a month. I related to my oncologist my concern about taking this drug. While I did not have heart problem, I related that my son died of a massive heart at age 54; my mother also died in her sleep at age 61, my mother’s brother had his first heart attack at age 39 and the list I gave him goes on. My GP said she could write me a prescription for a statin; however, there is no evidence to suggest at my age it would help. I have an appointment in 2 weeks to receive a heart monitor to wear for 2 days. Results will take 2 weeks. I have not contacted my oncologist. I am thinking of visit a different oncologist, a cardiologist and a doctor of geriatric medicine because my current doc is huge on the med. I forgot to mention having hot flashes, which seem more intense but not more frequent.
My ANCO score is 4 with Anastrozle therapy. From the beginning of taking the drug, I was aware it could cause heart problems in elderly patients with a history of familial heart disease. I am extremely upset that the many years I worked very hard to stay heart healthy have been all for nothing after only 6 months on Anastrozle, if that is indeed the case. There is little study done on this in the aged. Thanks to every one for posting; every comment has been helpful.

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Do you mean your Oncotype score was 4 with anastrazole? So the score itself was 8? That is a very low score, relatively low risk. What was the grade of your cancer, and any lymph nodes positive, or lymphovascular invasion?

That is quite a list of possible side effects. I believe the lipid rise is a known side effect. Do you think there are any other possible explanations for other side effects? Blood pressure is very variable anyway...

I wonder if you could switch to Femara, or switch brands, or take a half dose or alternate days. The package insert for Femara cites a study showing that 20% of the recommended dose is effective. My doc okayed a half dose (alternate days) but I stayed on a full dose.

I hope the monitoring is helpful. Regardless of cause, your symptoms sound scary and monitors are sometimes reassuring and in any case will tell you what is going on.

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@windyshores

Do you mean your Oncotype score was 4 with anastrazole? So the score itself was 8? That is a very low score, relatively low risk. What was the grade of your cancer, and any lymph nodes positive, or lymphovascular invasion?

That is quite a list of possible side effects. I believe the lipid rise is a known side effect. Do you think there are any other possible explanations for other side effects? Blood pressure is very variable anyway...

I wonder if you could switch to Femara, or switch brands, or take a half dose or alternate days. The package insert for Femara cites a study showing that 20% of the recommended dose is effective. My doc okayed a half dose (alternate days) but I stayed on a full dose.

I hope the monitoring is helpful. Regardless of cause, your symptoms sound scary and monitors are sometimes reassuring and in any case will tell you what is going on.

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Perfect answer and it helped me too. Thank you so much

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@windyshores

Do you mean your Oncotype score was 4 with anastrazole? So the score itself was 8? That is a very low score, relatively low risk. What was the grade of your cancer, and any lymph nodes positive, or lymphovascular invasion?

That is quite a list of possible side effects. I believe the lipid rise is a known side effect. Do you think there are any other possible explanations for other side effects? Blood pressure is very variable anyway...

I wonder if you could switch to Femara, or switch brands, or take a half dose or alternate days. The package insert for Femara cites a study showing that 20% of the recommended dose is effective. My doc okayed a half dose (alternate days) but I stayed on a full dose.

I hope the monitoring is helpful. Regardless of cause, your symptoms sound scary and monitors are sometimes reassuring and in any case will tell you what is going on.

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Thank you for the reply - it is helpful and restored hope. The Onco recurrence score was 16; the distant recurrence risk at 9 years with AI therapy is 4%. Quantitative Single- Gene Scores : 11.7 ER Positive; 5.5 PR Positive and 8.8 HER2 Negative. I had a lobular carcinoma with no lymph node involvement My surgeon rated the cancer as Grade 2 with a 5-year survival of 93%. The oncologist used a letter grading system rather than numerical; his grade was 1A or 1B. No lymphovascular invasion. The numbers on my Onco report do not seem to be helpful in predicting outcomes without the aromatase inhibitors. Tomorrow I will visit the website for clarification on the numbers. I appreciate your input. It has been very helpful and motivational.

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To clarify for you, the grade 2 refers to the s phase, or how many cells are reproducing at any given time within a tumor. This would be middle of the road, 1 being the least aggressive and 3 being the most aggressive reproduction in cells.
The 1a or 1b would be the stage of your cancer, this refers to how advanced it was, with stage 0 being in situ or encapsulated. Stage 1 would refer to a tumor 1cm or smaller with no node involvement. Definitely a preferable stage. Stage 4 being the worst meaning metastatic disease.
@windyshores is awesome at helping to decipher the tests. I am so glad she is here for all of us.
I agree with her and others about having a conversation about your endocrine therapy with your doctor. There are quite a few options that could be considered.

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@callalloo

Did the woman who ate the dried plums mention why they help or hopefully do? I've read about all the major anti-resorptive drugs and the side effects are worrisome. I'm hoping that healthier diet and post-lockdown return to gym will stave off loss of bone density. My oncologist did ask if people in my immediate family suffered broken bones, wrists, etc., beyond things like sports injuries and the usual childhood stuff as genetics play a part. And stressed any activity that can help one's balance, e.g., yoga or tai chi.

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@callalloo Yes, she did provide a reference regarding the beneficial effect of dried plums on the bone density of post-menopausal women. I believe it was the Florida State University study mentioned in this article: https://plantmedicines.org/dried-plums-prevent-bone-loss/
@gillooly, Your side effects from anastrozole sound horrendous. I just started this drug myself, with trepidation. Like you, I have had no early bad side effects, so far, just some leg cramping that I can deal with. Also, my most recent BP was 118/69, which I would like to maintain. Your estrogen level of 11.7 seems really low so that one has to wonder if estrogen blocking would be that helpful, which I think is reflected in your ONCO numbers. (In comparison, my estrogen is +98, PR +97, ONCO 8. and distant recurrence with AI/Tam at 3%, so w/o a hormone blocker about 5-6%) From what I understand, AIs reduce local, regional, and new primaries about 50%, and distant recurrence about 35%. Grade, size of tumor, surgical margins will all affect this risk. Are you going to get a second opinion for treatment? I did, and I found it helpful.

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@auntieoakley

To clarify for you, the grade 2 refers to the s phase, or how many cells are reproducing at any given time within a tumor. This would be middle of the road, 1 being the least aggressive and 3 being the most aggressive reproduction in cells.
The 1a or 1b would be the stage of your cancer, this refers to how advanced it was, with stage 0 being in situ or encapsulated. Stage 1 would refer to a tumor 1cm or smaller with no node involvement. Definitely a preferable stage. Stage 4 being the worst meaning metastatic disease.
@windyshores is awesome at helping to decipher the tests. I am so glad she is here for all of us.
I agree with her and others about having a conversation about your endocrine therapy with your doctor. There are quite a few options that could be considered.

Jump to this post

Thank you so much. I do plan for a second opinion; I will wear a heart monitor in about 2 weeks and the results could be significant to making a decision as to continuing the Anastrozle. Also planning on going to an independent lab for a second lipid profile. My insurance may refuse to pay for a second test and the independent is fairly reasonable in cost. I find it very difficult to be heard by some physicians and numbers don’t lie. I would like to continue on the drug if I can find a way to do so without getting heart disease. I have gotten some great comments about other options. Thanks again. Good luck on your journey.

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@gillooly

I have been on Anastrozle for 6 months and was congratulating myself on lack of significant problems when that all changed 1 month ago. It slowly began with minor dizziness and rapidly accelerated to a doze or many more times a day when I feel as if I will blackout. Occasionally, my heart feel like it is pounding in my chest. I should relate that I am 77 and util My BC diagnosis, was blessed to have great health and was not on any medication. I went to my GP a week ago and requested a Lipid profile. My last was 2 years ago and excellent numbers. No longer; LDDL nearly 250. BP 149 over 99. Seven months ago 130 over 80. For years i have weighed between 102 and 106. Now gaining weight at almost 2 pounds a month. I related to my oncologist my concern about taking this drug. While I did not have heart problem, I related that my son died of a massive heart at age 54; my mother also died in her sleep at age 61, my mother’s brother had his first heart attack at age 39 and the list I gave him goes on. My GP said she could write me a prescription for a statin; however, there is no evidence to suggest at my age it would help. I have an appointment in 2 weeks to receive a heart monitor to wear for 2 days. Results will take 2 weeks. I have not contacted my oncologist. I am thinking of visit a different oncologist, a cardiologist and a doctor of geriatric medicine because my current doc is huge on the med. I forgot to mention having hot flashes, which seem more intense but not more frequent.
My ANCO score is 4 with Anastrozle therapy. From the beginning of taking the drug, I was aware it could cause heart problems in elderly patients with a history of familial heart disease. I am extremely upset that the many years I worked very hard to stay heart healthy have been all for nothing after only 6 months on Anastrozle, if that is indeed the case. There is little study done on this in the aged. Thanks to every one for posting; every comment has been helpful.

Jump to this post

I'm so sorry to read about what you're going through. I chose not to take an aromatase inhibitor in part because I have the genetic marker for, and a nuclear family full of, heart disease. However, I question you doctor's thinking that a static could not work. My former (great) cardiologist invented the calcium store and has patients in their 90s who had their first heart attack in their thirties and are alive and active today. Please do search out some more proactive physicians. I had to do it after moving to a new area but it was worth it. I've had high cholesterol for a zillion years but the echocardiagram of someone decades younger. And I cannot take statins. The human body is complicated and fascinating and isolating a variable here and another there does not tell the whole story. Best wishes in getting a new medical team to work with you.

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