Aromatase Inhihibitors: 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.

@batm

I was only on Arimidex for about a month, the side effects were too much; also experienced an increased heart rate. My resting heart rate should be 60-70, its been floating between 83 and 103. Have no history of heart issues, no family history either. Echo was fine, EKG fine, bp fine, bloodwork fine. Seems coincidental that I’m feeling in now. Anyone else have any heart issues during or after Arimidex?? I’m not willing to try any other AI’s until this is resolved, cardiologist agrees.

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I had to go off them after 3 months . I am not ready for the nursing home at 64

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@cancersucks

I had to go off them after 3 months . I am not ready for the nursing home at 64

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What did your oncologist say about you going off of them?

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Sorry to read that so many women have had adverse side effects from arimedex. Diagnosed with stage one BC, no lymph involvement, Followed by 28 radiation treatments. I have been taking Arimidex For the past eight months and have Experienced very few side effects. Some hair loss, mid day fatigue, Maybe some brain fog which might be due more to my age than the drug. I have no joint pain nor any other issues related to the drug. Maybe I have been fortunate or those side effects may still be in my future.

Liked by trixie1313

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@mimi99

I decided against it. I was diagnosed earlier this year, stage one,
negative nodes. I had lumpectomy and 3 proton beam treatments. I am
currently recovering from reverse shoulder replacement, have had two knee
replacements, lots of arthritis, and fibromyalgia. I am almost 70,
currently taking tamoxifen, and fingers crossed evdrything will go well.

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Any side effects from Tomixifen?

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@colleenyoung

Hi @mollyjbrown, I appreciate your posting about your experience living with Arimidex (anastrozole). For some people, it can certainly be a challenge to manage the side effects. You'll notice that I moved your message to this discussion where women are talking about tough choices: sticking with an aromatase inhibitor and coping with side effects or discontinuing the medication. It is a different risk calculus for everyone and each person experiences side effects differently. Thus, I'm grateful to add your story of how you manage the side effects and the choices you made.

@goldieshostak, you ask a very good question if your risk of recurrence is worth continuing with Arimidex. I encourage to read the post from Molly that was just added above this post. Ultimately the decision is yours. I recommend that you talk with your oncologist to discuss YOUR specific risk of recurrence.

I'm curious if anyone has used the CTS5 calculator (https://www.cts5-calculator.com/) with their oncologist to calculate their risk of recurrence? The tool is meant to be used with your doctor. You can read more about it here: https://www.breastcancer.org/research-news/online-tool-predicts-hr-pos-recurrence-risk

Anyone use it with their doc?

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Is the CTS5 calculator the same as the Mamma Print test/ Has anyone had the Mamma Print test? Please google if you had not heard of it. Francine

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Did any of you who went off of Arimidex for a two week trial, have any negative effects from stopping them? I've been on Arimidex for 14 months and I'm having severe leg and knee pain. I have stenosis, but I was wondering if the Arimidex was contributing to the pain, so 4 days ago I went off of them to see if it made a difference. The leg and knee pain is still there, but In addition I'm now feeling almost flu-like symptoms. (No fever).

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Not arimidex, but I went off of Femura, and felt better 3 days later. However, you took the AI longer than me. I had severe leg pain from Femura and I am taking a 2 week break

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Hello. New member of the club, here. Stage 1 invasive lobular on the left, LCIS right. Lumpectomy surgery couple weeks ago on both. The surgeon says radiation for a month and Arimidex for 5 years. I'm 68 and wondering if I should just do the radiation and screw the hormone stuff. Former smoker with mild COPD/emphysema well controlled, currently on BP and cholesterol meds that are doing fine. The internet research of Arimidex is the reason I'm here. … and frankly, you've all terrified me. Quality of life on any AI sounds like an absolute nightmare.

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@samy

Hello. New member of the club, here. Stage 1 invasive lobular on the left, LCIS right. Lumpectomy surgery couple weeks ago on both. The surgeon says radiation for a month and Arimidex for 5 years. I'm 68 and wondering if I should just do the radiation and screw the hormone stuff. Former smoker with mild COPD/emphysema well controlled, currently on BP and cholesterol meds that are doing fine. The internet research of Arimidex is the reason I'm here. … and frankly, you've all terrified me. Quality of life on any AI sounds like an absolute nightmare.

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@samy,- Good morning Samy. Maybe a serious face-to-face conversation with your Oncologist would help. I know I'm in this conversation not to make the decision to stop taking an estrogen blocker, but to exchange information with other women who have experienced the same side effects. At first, i thought it was just me, but now I know that my side effects are common. I'm trying to gather information to help me decide whether i should chose an alternative drug, but not to stop taking an AI altogether. I don't want to take the chance of a recurrence. These discussions are reassuring and comforting. I hope medical research on these various estrogen blockers continues and that one day they will be more easily tolerated. There are other forums in this set of breast cancer discussion groups related to breast cancer survivors and medications that you might find helpful, too. Best of luck to you, Samy.

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@samy

Hello. New member of the club, here. Stage 1 invasive lobular on the left, LCIS right. Lumpectomy surgery couple weeks ago on both. The surgeon says radiation for a month and Arimidex for 5 years. I'm 68 and wondering if I should just do the radiation and screw the hormone stuff. Former smoker with mild COPD/emphysema well controlled, currently on BP and cholesterol meds that are doing fine. The internet research of Arimidex is the reason I'm here. … and frankly, you've all terrified me. Quality of life on any AI sounds like an absolute nightmare.

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@samy
Samy – don't be afraid to try the AI…not everyone has bad side effects. I had headaches for about a month and then they stopped. Yes, you can get bone aches, but taking vitamin D3 will help with that as well as turmuric. I've started taking biotin to help with possible hair loss – I wound up getting the type that melts in your mouth and tastes like raspberry. I am 67 and have bronchiectasis so that all got inflamed with my chemo, but can be controlled. As far as radiation is concerned, follow your radiation oncologist's advice. Mine suggested using calendula cream 3-4 times a day AFTER radiation that day. I stuck to that but did get burns and blisters and then he prescribed silvadene which is a burn ointment and it really helped. So, again, everyone reacts individually – just take one day at a time. All the best to you in this wild and crazy journey.

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@samy

Hello. New member of the club, here. Stage 1 invasive lobular on the left, LCIS right. Lumpectomy surgery couple weeks ago on both. The surgeon says radiation for a month and Arimidex for 5 years. I'm 68 and wondering if I should just do the radiation and screw the hormone stuff. Former smoker with mild COPD/emphysema well controlled, currently on BP and cholesterol meds that are doing fine. The internet research of Arimidex is the reason I'm here. … and frankly, you've all terrified me. Quality of life on any AI sounds like an absolute nightmare.

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Welcome Samy! Hoping you find the exchange of information from this board to be as valuable as I have found it to be. We’re all in this journey together-our diagnosis are each unique to us individually, but I have found the support of other women who are breast cancer survivors to be invaluable. Yes, the side effects of medications we must take are not pleasant. However, the alternative risk of recurrence of cancer is also dreadful! I have learned from this journey that I have a choice of a living with side effects of the meds, or living with the fear of a higher risk of cancer returning. Neither of those options is a ‘good’ choice. So far, I have chosen to live with the side effects of the meds and the inconvenience of a somewhat lower quality of life, rather than living with increased the risk of recurrence. Cancer changed my life completely and unfortunately there is no going back to the security of having a healthy body that I had previously. It sucks, but that’s reality. And the bottom line is there really isn’t much we can do about it.

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Hello everyone~ I am new to this discussion but happy to be a part of it.I was diagnosed with stage 1 invasive ductal carcinoma 2 months ago..had a bilateral masectomy and reconstructive surgery at the same time as surgery…have a very strong family history of several types of cancer…have been on letrozole for 6 weeks…I had the oncotype DX test which scored 11 so was told chemo would probably not help me..so did not have any chemo or radiation..I have to say I am a little fearful that cancer may show up in my body somewhere else…what kinds of labs or scans do you have and how often do you have them? I have had a few relatives that have "fallen between the cracks" and really want to prevent that..so thankful to have a conversation with you!

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hi @lauradahl. I had a low DX too, but did have 1 month of radiation. I was on letrozole for 6 weeks but went off due to joint pain side effects. Now I am on aromosin and starting to feel similiar side effects. Are you having any side effects from letrozole yet? What do you mean that relatives have "fallen between the cracks?

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Yes, I have fatigue from the letrozole~ started taking it in the evening, switched to morning, back to evening..just not sure when best time is! Bones are a little achy, but nit too bad…as far as relatives…I feel that their regular physician and their oncologist could have communicated better and more scans done…to make sure their cancer was under control…I don't want to sound negative but being preventative is so important!

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@lauradahl

Hello everyone~ I am new to this discussion but happy to be a part of it.I was diagnosed with stage 1 invasive ductal carcinoma 2 months ago..had a bilateral masectomy and reconstructive surgery at the same time as surgery…have a very strong family history of several types of cancer…have been on letrozole for 6 weeks…I had the oncotype DX test which scored 11 so was told chemo would probably not help me..so did not have any chemo or radiation..I have to say I am a little fearful that cancer may show up in my body somewhere else…what kinds of labs or scans do you have and how often do you have them? I have had a few relatives that have "fallen between the cracks" and really want to prevent that..so thankful to have a conversation with you!

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lauradahl – I'm sure pretty much everyone on this site would agree that during the first months and years after diagnosis and in treatment you worry about, well, just about everything. It's impossible not to do so. Sounds like you were early stage and you opted for the mastectomies (which I did as well) to reduce your risk as much as possible and I suppose I thought also, reducing worry because without breasts, it's quite a lot harder to get breast cancer. In my family, prior to my sister having lung cancer….there was no cancer and my sister and I are still the only cancer people in our entire family, so perhaps there is a genetic component and perhaps there isn't always. That said…………your doctors will want to see you frequently in the first two years. My doctors do regular exams of my chest area (I didn't have reconstruction), they do blood tests and I'm due this year for an MRI. I have had ultrasounds as well. The best thing you can do is be very proactive with how you feel, any symptoms you might have and things that feel different (once your body has had a chance to settle in a bit). It took me two years to feel anything like my old self. I had a scar revision surgery after a year and they used some drugs I was allergic to and unfortunately I ended up with some odd symptoms from that for a while. I feel pretty good now but I still let my doctors know about everything that's happening with me so they can check it out.
Hugs

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