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Topic: For Arimidex (Anastrozole) users, new, past, and ongoing

Forum: Hormonal Therapy - Before, During, and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Jul 10, 2012 07:46AM - edited Nov 15, 2017 02:07PM by Moderators

nancyjac wrote:

I found a couple of older threads about Arimidex, but they covered a large time span with a gazillion posts, so I thought I would start a new thread for Arimidex/Anastrozole users.

I am starting on Anastrozole today. Plan is to take it for 5 years, possibly longer. I already have osteopenia and osteoarthritis (limited to one knee at this point), so I am most concerned about the bone and joint side effects. I'm already frustrated by finally having some energy and stamina back after chemo and radiation, but now I have trouble exercising due to the bum knee. I'm concerned about that getting to be even more of a problem on the Anastrozole.

Please share you experiences, side effects, questions etc. about Armidex/Anastrozole here.

Edited by Mods to add content from the main Breastcancer.org site on Arimidex: Benefits, Side Effects and More

Dx 11/2011, IBC, Stage IIIB, Grade 2, ER+/PR+, HER2+ Targeted Therapy 12/6/2011 Herceptin (trastuzumab) Chemotherapy 12/6/2011 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 4/9/2012 Mastectomy: Left, Right Surgery 4/16/2012 Mastectomy: Left Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/28/2012 Breast, Lymph nodes, Bone Hormonal Therapy 7/9/2012 Arimidex (anastrozole)
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Posts 17281 - 17296 (17,296 total)

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Mar 24, 2020 10:58PM Rosiesride wrote:

PontiacPeg...also, were you only on anastrozole for 5 years? I was on 1 year of tamoxifen, then he put me on anastrazole. I was told last year that I could be on it for 7 years instead of 10, which was the original time frame. I wonder if more research has been done since I saw my MO and 5 years on it would be the same benefit as 7? Were you kind of nervous going off of it? I have done fine on it and I think the claritin I have taken for the bone pain has helped.

Dx 12/17/2013, ILC, Right, <1cm, Stage IIB, Grade 2, 3/11 nodes, ER+/PR+, HER2- Surgery 1/3/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Chemotherapy 2/10/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 6/19/2014 Breast, Lymph nodes Hormonal Therapy 8/29/2014 Arimidex (anastrozole)
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Mar 24, 2020 11:09PM PontiacPeggy wrote:

Rosie, for my allergies I find only Benadryl works - I've tried the others. Plus I really like being able to take one every 4 hours or longer. For me the 12 hr/24 hr ones don't last 12 or 24 hours. Usually I take Benadryl 4 times a day and add more if need be. I take FloVent. And so far fine with it. Mucinex really does work. Take the 1200 twice a day for several weeks (my NP said 8 weeks but I stopped after 5 or 6 because it made me cough - I always forget what the SE is I get). But I go back to it because it DOES work! Yeah, I've got the acid reflux too and take Pepcid twice a day. More stuff. But it helps. So does hot tea at night (when I find it the most annoying).

I know what you mean about allergies. Moved to Spokane 4 years ago. Loads of pine trees and all sorts of new things to make my allergies happy. Plus wildfires. Stuff that Detroit didn't have. And it's dry here. I miss the humidity - everyone things I'm a tad touched over that one.

Good luck figuring out what meds work for you!

HUGS!!!

Peggy. Diagnosed age 68., Oncotype 13. Everything is doable - not easy, but doable. Dx 6/5/2014, IDC, <1cm, Grade 2, 0/5 nodes, ER+/PR+, HER2- Dx 7/23/2014, DCIS, <1cm, Stage I, Grade 1 Surgery 7/23/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 9/2/2014 Breast Hormonal Therapy 10/17/2014 Arimidex (anastrozole)
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Mar 24, 2020 11:13PM PontiacPeggy wrote:

Rosie, Yup. Only 5 years. My MO said with my Dx more than 5 years was not called for and would likely do more harm than good. It was definitely an uneasy feeling going off it since I'd had so few problems. But I'm good with it. All my docs here in Spokane agree with this. My Dx is quite different than yours, plus I'm 74 which may matter (or not). As with everything BC, every person, every MO is different. I completely trust mine here (not so much the one I left behind in Michigan). Good luck!

HUGS!

Peggy. Diagnosed age 68., Oncotype 13. Everything is doable - not easy, but doable. Dx 6/5/2014, IDC, <1cm, Grade 2, 0/5 nodes, ER+/PR+, HER2- Dx 7/23/2014, DCIS, <1cm, Stage I, Grade 1 Surgery 7/23/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 9/2/2014 Breast Hormonal Therapy 10/17/2014 Arimidex (anastrozole)
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Mar 25, 2020 10:51AM CeliaC wrote:

Rosie - My MO is staying firm on the 5 years. At upcoming 4/24 appointment, provided it is not postponed due to coronavirus, will ask him to re-confirm 5 years. Stay safe & stay strong.

Dx 12/2/2016, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 12/20/2016 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 2/20/2017 Whole-breast: Breast Hormonal Therapy 4/4/2017 Arimidex (anastrozole)
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Mar 26, 2020 01:25AM SoCalLisa wrote:

I only did the five years. Actually 4 plus one on tamoxifen. Finished in 2006.

Biography: DX 11/2000 LCIS,DCIS,IDC 2B, Grade 1, ER+,PR+ Her2Neg 1 pos node Lumptectomy, CMF chemo X 6 mos, DX 8/2001, IDC same breast--Mastectomy , Left Breast Lumpectomy... Tamoxifen, one year...Armidex, Four years
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Mar 26, 2020 09:49AM PontiacPeggy wrote:

SoCalLisa, you give hope to all of us!

HUGS

Peggy. Diagnosed age 68., Oncotype 13. Everything is doable - not easy, but doable. Dx 6/5/2014, IDC, <1cm, Grade 2, 0/5 nodes, ER+/PR+, HER2- Dx 7/23/2014, DCIS, <1cm, Stage I, Grade 1 Surgery 7/23/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 9/2/2014 Breast Hormonal Therapy 10/17/2014 Arimidex (anastrozole)
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Mar 26, 2020 04:58PM Janett2014 wrote:

I also did 5 years: summer 2014 - summer 2019. My MO said that the risk to my bones was greater than the benefit of Arimidex after 5 years.

Diagnosed age 60 with IDC in 2014. Stage 1A, Grade 2, 0/10 nodes, ER+/PR+, HER2- Cancer on both sides, bilateral mastectomy, reconstruction with silicone implants, Oncotype 16, Arimidex (Anastrozole) 5 years. There are more details in my biography.
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Mar 26, 2020 07:38PM PontiacPeggy wrote:

Janet, exactly.

HUGS!

Peggy. Diagnosed age 68., Oncotype 13. Everything is doable - not easy, but doable. Dx 6/5/2014, IDC, <1cm, Grade 2, 0/5 nodes, ER+/PR+, HER2- Dx 7/23/2014, DCIS, <1cm, Stage I, Grade 1 Surgery 7/23/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 9/2/2014 Breast Hormonal Therapy 10/17/2014 Arimidex (anastrozole)
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Mar 27, 2020 09:00AM - edited Mar 27, 2020 09:02AM by Whatjusthappened

Rosiesride, I also have a chronic cough, possibly from the Arimidex, possibly not. A cough IS listed as a potential side effect of Arimidex. However, I'm on multiple drugs that list a cough as a potential side effect, and also have fibrosis in my lung from the radiation. I'm seeing a pulmonologist who says the fibrosis looks "unusual" from what he would usually see, whatever that means. I have an inhaler that helps, and I also take Claritin. I am supposed to have an endoscopy soon, but who knows when that is going to happen now.

I have to agree with you that having a chronic cough during this outbreak is particularly annoying- everyone starts to stare at me whenever I start coughing (don't worry, I'm staying home!). I tend to think the cough is not caused by just one thing, but a combination of medicines and conditions. I suspect that may be true for many of us.

About the gabapentin, I felt the same about taking yet another drug. I was told to just try it a few days, and see if it helps. I only take it at night, because it makes me sleepy.

BRCA2 positive; multifocal LCIS/ILC found after sugery Dx 2/1/2019, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 2/21/2019 Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/22/2019 External: Lymph nodes, Chest wall Surgery 6/17/2019 Prophylactic ovary removal Hormonal Therapy Arimidex (anastrozole)
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Mar 27, 2020 11:09AM PontiacPeggy wrote:

It's so hard to determine what is causing a cough. I have horrid, annoying allergies and GERD - both contribute to my cough, mucous. Since I've been in self-isolation for 15 days I'd guess I'm probably corona virus-free. At least I hope so. The hardest part is not being able to drive cancer patients to their appointments. It kills me to say no, but at 74 I'm very vulnerable.

Peggy. Diagnosed age 68., Oncotype 13. Everything is doable - not easy, but doable. Dx 6/5/2014, IDC, <1cm, Grade 2, 0/5 nodes, ER+/PR+, HER2- Dx 7/23/2014, DCIS, <1cm, Stage I, Grade 1 Surgery 7/23/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 9/2/2014 Breast Hormonal Therapy 10/17/2014 Arimidex (anastrozole)
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22 hours ago Oceanbum wrote:

This may have been asked before and if it has I apologize for asking it again. But are we at a higher risk for the Coronavirus since we are on Arimiidex? I know if you are in active treatment you are at a higher risk. I finished my chemo 2 1/2 years ago and my Herceptin about 2 years ago. My work is considered "essential" because it is in the food and beverage industry. I work in an office but I'm still worried with our drivers being in and out of grocery stores, convenience stores, pharmacies, restaurants & bars (who are open for carry-out only) that I'm at a much higher risk. I've called and messaged my oncologist for an answer but I'm still waiting to hear back from them. So, what are your thoughts on this? I would like to work from home and probably about 75% of my job could be done from home.

Becky ~ "Sometimes we're tested not to show our weaknesses, but to discover our strengths." Surgery 11/2/2000 Dx 3/6/2017, IDC, Right, <1cm, Stage IA, Grade 1, ER+/PR+, HER2- Dx 3/21/2017, IDC, Left, 1cm, Stage IA, Grade 3, ER+/PR+, HER2+ Chemotherapy 4/21/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 4/21/2017 Perjeta (pertuzumab) Targeted Therapy 4/21/2017 Herceptin (trastuzumab) Surgery 9/5/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 9/25/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 10/3/2017 Herceptin (trastuzumab) Surgery 12/15/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/20/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Hormonal Therapy 12/6/2018 Arimidex (anastrozole) Surgery 6/7/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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22 hours ago Peregrinelady wrote:

The dr. on a podcast here says no, but I have also read that anyone with a history of cancer is at higher risk, so I have not really found a definitive answer.
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/18/2016 Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 7/31/2016 Arimidex (anastrozole)
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21 hours ago HikingLady wrote:

Oceanbum I'm thinking about your good question, are we more at risk for COVID-19 because of being on an AI?

Not as far as I've heard or seen, but be sure to pay attention to your other risks (below), and ask your MO for guidance on this very good question. This exact question probably isn't possible to answer, as the disease is so new. There probably hasn't been enough time yet to collect all possible data for different populations.

My sources for understanding COVID-19 response/risk: Watching Dr. Fauci (NIH)and WHO and CDC experts and other epidemiologists, ICU pulmonologists, etc explain who's at the most risk, is how I'm researching these things. And, my son-in-law, who regularly gives me updates on future prediction modeling and safety guidelines. He teaches at a medical school (Dartmouth) and is an attending ER doctor there.

People who are having the roughest time (= possible respiratory distress complications) are over 60 + have a particular "co-morbidity" (= underlying/additional health issue) in the following categories: an immune-compromising issue (autoimmune disease or medication that lowers immunity), diabetes, or an underlying respiratory issue such as asthma, a history of pneumonia, COPD, emphysema, or smoke cigarettes.

I am in the special risk category because chemo caused two separate, extremely serious lung inflammation events (x-rays, many weeks of a strong steroid each time, extremely debilitating like bad pneumonia), which is expected to have left me with lung scarring. Over 60 = worse outcomes, and successively so the older we are, with this disease. Anyone who is ill and who struggles with breathing should get to the ER.

HOW WE'RE PROTECTING OURSELVES AT MY HOUSE

My husband is front line. He manages hospice nurses, and is a hospice RN himself, and once in awhile, he has to do a patient visit. Mostly, he can work from home to manage his team of nurses, aides and social workers, with 2 phones and a computer and a tablet and video meetings---this now all takes up our entire dining room. When he has to be out to see a patient (it's rare now), he's suited up with a lot of PPE and a ton of protocols.

We are wearing homemade fabric masks when we go anywhere where there are other humans--I have sewn us a few and will make more soon, due to new recommendations on this. Dr. Zeke Emanuel said the other day in a TV interview that this is now recommended for three reasons:

1. keep us from touching our faces

2. "normalize" (!!!) the pandemic and remind everyone to socially distance

3. possibly prevent some droplets from contaminating others if we're asymptomatically contagious, and possibly protect us a small bit from others

We're sheltering in place almost 100%, to flatten the curve, hoping this helps with PPE and equipment, to lower the "apex of the surge." We go for walks outside, and try to be much more than 6' apart from anyone else, so we're avoiding hiking trails, and just walking out of our house at this point, in our neighborhood, no driving. Don't want to have any unforeseen load on ER's by having an accident, etc.

Outside shoes stay outside. We strip out of our clothes at the door, drop outside clothes (when we've been around other people at all--maybe not if we just walked on the sidewalk in the neighborhood, but yes if it was an errand anyplace where anyone touches anything, like post office or gas station or store) into a pillowcase at the door, and handle them carefully, right into the wash, and wear gloves and a (homemade, fabric, "better than nothing") mask while doing so. Shower immediately and change into inside clothes.

We wipe down everything all the time: phone screens and glasses ear pieces w/ alcohol wipes, and all inside and outside doorknobs and handles and chair backs, etc. AND we wash our hands all the time and try not to touch our faces. Using lysol or bleach spray. CDC website has cleaning guidelines which we follow.

We stay 6' apart from everyone, and more distance if possible. The new research on droplets staying in the air in aerosolized form is very concerning. NO ONE else comes into our house. We visit with people we love on FaceTime or Whats App or Google Hangouts (it's free! I recommend!) or Zoom.

We have groceries delivered every week or two. We wipe down all groceries that come in the house with lysol wipes, bleach spray, don't set outside things on any kitchen surface without spraying that surface down or putting things on a towel that we wash, or we set UPS packages, shelf-stable groceries, etc. aside for 3-4 days before touching anything.

Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/9/2003 Lumpectomy Radiation Therapy 6/10/2003 3DCRT: Breast Hormonal Therapy 8/8/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/7/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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21 hours ago Oceanbum wrote:

Thanks Peregrinelady & HikingLady for your responses. Good advice! I've left a voicemail and an email for my doctor's office. I haven't heard back from them yet. I'm really nervous being at work. Not only for me but also for my husband. Shortly after I finished all of my treatments he had a heart attack. He's also in the food and beverage industry so he's working also. I actually worry more for him than I do for myself.

I hate this virus. Tomorrow is my grandson's 2nd birthday and Monday is mine. I won't get to see him on his birthday and I won't get to celebrate mine. I hate this virus more and more everyday.

Becky ~ "Sometimes we're tested not to show our weaknesses, but to discover our strengths." Surgery 11/2/2000 Dx 3/6/2017, IDC, Right, <1cm, Stage IA, Grade 1, ER+/PR+, HER2- Dx 3/21/2017, IDC, Left, 1cm, Stage IA, Grade 3, ER+/PR+, HER2+ Chemotherapy 4/21/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 4/21/2017 Perjeta (pertuzumab) Targeted Therapy 4/21/2017 Herceptin (trastuzumab) Surgery 9/5/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 9/25/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 10/3/2017 Herceptin (trastuzumab) Surgery 12/15/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/20/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Hormonal Therapy 12/6/2018 Arimidex (anastrozole) Surgery 6/7/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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20 hours ago Augustkm wrote:

anastrozole --been on only one week. Major digestive upsets. Worse heart burn I have ever had with severe pain,dizziness, vision only blurry grey, unable to eat. Bed ridden for 1 1/2 days. I don't understand the link between estrogen and my digestive system.

Do the other post menopausal drugs have the same effects? Five years is impossible at this rate.

Thank you.

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20 hours ago HikingLady wrote:

Augustkm When I started on my AI, my MO told me that in his experience, difficult side effects usually lessened over time. How long does that take, I asked. He said, in 2-6 months, I should feel better, and to please hang in there. At the very beginning, I had all sorts of weird things: dizziness, nausea, exhaustion, severe joint pain, etc. It all got a ton better in 1-2 weeks. By 3-5 months, almost none of that, ever. I feel okay now. I feel best if I get 1 hour of good exercise each day + drink lots of water.

Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/9/2003 Lumpectomy Radiation Therapy 6/10/2003 3DCRT: Breast Hormonal Therapy 8/8/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/7/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant

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