For Arimidex (Anastrozole) users, new, past, and ongoing
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Good morning, Ladies. I have lower back pain this morning. I didn't exercise for 2 days and I guess I am paying the price. Heading out to walk.
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BennyBear; OMG, hope surgery went well and you heal quickly! I finally got the cortisone shot, seems to be helping a bit so far!
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LongTermSE - I have not had the back, thigh, eczema issues you are experiencing. Have been taking Arimidex since September, prior to that, Tamoxifen. But everyone is different. And it is scary to think they could hapen years after taking drug. Arimidex can compromise bone health. You might want to consult a specialist to see if there are other things causing this. Good luck, I hope you find out what is going on and can get help for it.
Ibrance and Arimidex. Supplements include Mg, D, biotin, C, Turmeric (Curcumin), Glucosamine-Chondroitin, BoneUp (multi with Collagen), Thorne (another multi), Melatonin (at night). Self-massage for lymphedema as well as therapist. Acupuncture.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?
6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. Could have been swelling earlier but wearing long sleeves. Ultra sounds for clots, Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. 7/2/2019 lymphatic therapist recognized that there was something very wrong and sent me back to the DR.
8/2019 CT, Breast/chest, neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)
9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery, if needed.
10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.
1/2020 CT showed tumor in Axilla shrunk (hooray!!) from 2.3 to 1.1 but picked up something in lower bowel. DR consulted a DR I saw in 2011 who compared it to 2011 image, said they had not grown, but one has changed and was starting to obstruct.
2/14/2020 Happy Valentine's Day. Surgery removed to remove, waiting for pathology. 2/25/2020 – Pathology. Not cancerous. Hooray. Surgeon said PET scan measures activity, and since it was not cancerous, why the PET did not see it, but the CT did.
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Harleysmom l’ve been receiving acupuncture for 10 months now and won’t end them until I finish taking my Anastrozole Rx. Acupuncture has helped ease my anxiety, excessive mood swings, fatigue, pain, and warm flashes. Initially I started 3 sessions each week for 6 weeks, then 2x’s weekly for a month, next 1x weekly for a month, and now I go biweekly. One time I had to cancel do to winter 🥶 weather so it was 3 weeks & my SE were intense. I encourage you to give it a try
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Is neuropathy a symptom of Anastrozole? Since I started taking it, I’ve noticed that at night my toes feel tingly and cold, but they aren’t cold to the touch. I can’t sleep through the night even if I take Melatonin and my hot flashes are back...argh!
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TinyDancer5- I didn't have the cold toe feeling but I had the sleep issues in the beginning, for about 3-4 months. I see that you've just started the AI less than a month ago. In my experience it took a while for this to pass. I would fall asleep but I could be awake 3 hours later, watch the sun rise, be back in bed soon after. I've been retired since June 2014 so I could function. I'm hoping yours will pass quickly.
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TinyDancer—it makes sense that this will be like another mini menopause, right? I didn’t have much in the way of hot flashes but also probably didn’t have much estrogen left in my body. I think some women get some weirdness with their extremities but your body might settle in. Like many, I’m stiff when I get up from sitting a long time and the bottoms of my feet are a little weird when I first get out of bed but that goes away quickly. Movement really helps.
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Thanks CindyNY and Ingerp.I also had an Ooph back in January so maybe I’m still getting used to having no estrogen left in me.
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Talking about acupuncture. I had four acupuncturist. Two Chinese style, one Korean style and one Japanese. The Korean was done by a MD.I think a lot has to do with what works for you. For me, the Japanese style worked the best then the Korean style. Of course, how well each individual works is like any practicaner. Some are better than others. Also give it time to work. It usually doesn't work overnight.
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TinyDancer, I did have neuropathy and trouble sleeping. I saw a neurologist to see if it came from a bulging disc with mild stenosis that I have in my neck. The emg was normal so he said it did not. However he did put me on gabapentin that I just take before bedtime, and it helps tremendously with the neuropathy, sleep trouble, and hot flashes as well. I've seen in this thread that a lot of oncologists will prescribe gabapentin. Something to consider if your issues don't go away on their own. I've been on anastrozole since June, though I did take a lengthy break from it because of severe hot flashes. I also had the ooph in June.
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Finally got the courage to tak my first Anastrozole today. I’m going to take it every other day for the first two weeks and then reassess.
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Melmax - hoping all goes well with the Anastrozole and no SEs.
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Melmax - My MO had me start on 1/2 pill for the 1st 10 days, so what you are doing sounds like a reasonable way to ease into the AI. Please reach out to us on this topic if you have question on SEs, and here's hoping for no SEs. You can do this!
Everyone - Gentle hugs, healing thoughts and stay safe!
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@whatjusthappened...I have been on anastrazole for 5 years...I always take a claritin at night for the bone pain, like I did when I had my neulesta shot after chemo treatment...I do think it helps! I also have neuropathy from the chemo drug and was prescribed gabapentin last year. I never took it as I didn't want to take more meds. I may try it though as my neuropathy is getting pretty bothersome.
I have a question about chronic coughing. I do have silent reflux and seasonal allergies, allergy to mold. I wondered if anastrazole can cause extra mucous and chronic coughing. I recently retired and planned on getting to the bottom of this with new allergy doctor and gastro doc, but am staying home due to covid-19, like everyone. Just wanted to ask if anyone had ever heard of coughing with the meds. Thanks. Rosie
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Yes, claritin has helped me for the past 5 years on anastrazole!! I missed a dose last night and my pain was more noticeable. Good luck! Rosie
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RosiesRide, I finished up my 5 years of anastrozole in October. I also have that mucous that is so darned annoying. Stopping anastrole didn't effect it. Best thing I found was Mucinex. It really works and I could take it all the time but I find I do better taking it for a few weeks and then stopping for a few weeks. I also find that it can help if I drink a lot of water. It sure is a pain, isn't it? BTW, I continued on with the Claritin. Plus I take Benadryl all the time. My PCP says taking both is fine. I have mild COPD and started on an inhaler 2 months ago. Can't tell if it helps the mucous or not. I got back and forth. Upshot is, I don't think anastrozole has anything to do with it.
HUGS!
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Hey PontiacPeg...It could be the silent reflux, plus the allergies, but YES it is most annoying!! I did go to doc around March 11, just to be sure it wasn't anything worse than allergies and he did say I could take claritin (as I always do) and another 24 hr. antihistamine in am...so I have been doing that, plus just got put on inhaler, adivair (?)...and I did start mucinex, but today, I didn't take the mucinex or the daytime antihistamine...cough is so much worse today! I will try benadryl...actually, I may take it now...then go back to the allegra in am and mucinex. Our pollen is horrible here in coastal NC and will probably last until mid april. A really BAD time to be having a chronic cough...everyone thinks you got the dreaded virus!! Thanks for the input on what you have done for your cough. Once this "lockdown" is over, I do plan on seeing docs to figure this out but I am not venturing out any time soon. Stay well and thanks! Rosie
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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.
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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!!!
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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!
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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.
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I only did the five years. Actually 4 plus one on tamoxifen. Finished in 2006.
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SoCalLisa, you give hope to all of us!
HUGS
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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.
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Janet, exactly.
HUGS!
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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.
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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.
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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.
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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.0
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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.
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