For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Hi Rosie! Yes, my MO said that for me, 5 years of anastrozole was enough. I'm 75 and that may have played into the decision. But I think key for him was how hard it can be on my bones. I do have osteopenia which has stayed stable due to Fosamax which I also stopped since 5 years is apparently the max recommended in my case. I stopped both last fall so we'll see what's what come January when I see my NP (who is actually my PCP
). Due to recommendations here when I first started anastrozole, I took regular Claritin for most of the 5 years. I also noticed that it helped when I missed or stopped it. I have not been taking it since I went off anastrozole.
Rosie, you picked an interesting time to retire. Hope you have found it satisfying. I am so thankful for the internet, social media and email - all of which help me stay sane. Plus I am knitting up a storm and reading. I can't imagine what it was like during the Spanish Flu pandemic in 1918.
Stay well and hope you don't need to go back on anastrozole.
HUGS!
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Pontiac Peggy...you are so right about my retiring!! I had planned to retire at 60 with 20 years service teaching kindergarten! I had a 3 year calendar countdown with stars on my retirement date of January 1, 2020...who knew it would actually be the last month or so of normalcy for teachers and schools! I thank the Lord everyday for my blessings!!
I also took Claritin from the start of my anastrozole. It really helped. Now that I am off of anastrozole, I don't take Claritin but I take a different antihistamine for allergies. I have more aches and pains now, however. But it may be from overdoing exercise the past few weeks. Taking it slow now as I want to get back to working out!
Like you, I am osteopinia and have been on fosomax for one year. My MO is leaving it up to me on whether or not to continue the anastrozole after my 3 month break. My mom had osteoporosis and that is also my concern so I will probably stay off of it. I get a bone scan next July...
Well, Peggy, I now have time to visit this site and I am sure I will talk to you soon! I am also reading a lot, gardening and just doing crafts and being with my grandbabies...that's what I wanted to do when I retired!!! Woop! Rosie
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Rosie, I found out from my new physician when I first moved to Spokane 4 years ago that I could take BOTH Benedryl AND Claritin at the same time. That was major for me since Claritin doesn't work at all for my allergies and obviously Benedryl doesn't help with the aches and pains. So I had 4 wonderful years of taking both together.
I took Fosamax for 5 years and my NP said no more. So I said, Ok! I'll be interested in seeing what my Dexascan says in January.
Lucky you having your grandbabies nearby. I have no grandchildren. I do live near my youngest son and his wife and mostly I've seen just him for the past 6 months. Very little socializing and none with my friends which is especially difficult.
Enjoy all your free time!!!
HUGS!
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Peggy...I have taken benadryl when allergies and coughing got bad...Claritin doesn't do much for the allergies!
I am sure it is so hard with the isolation and pandemic! Not sure how I would feel, being retired during the pandemic without the grands. Thankfully, I like my alone time and reading a good book, or walking on the beach is heaven!! Also crafting and gardening! Compared to the stress of working and the workload of teaching, dealing with parents, schoolwork and planning...I am fine with the quiet!! I have learned to find the silver linings...the blessings through the storms...always looking for the positive...that keeps us strong!! Stay safe and well Peggy!!
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Rosie, I had a pity party with my son tonight (texting), bitching about how depressing the quarantining is. I mean I know I'm lucky that I have things I can do, but still I am sooooo over it. Too bad that there are so many who refuse to do the right thing and wear masks and socially distance. We could get back to normal much sooner. End rant.
You take care and stay safe, too!
HUGS!
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Rosiesride - Congrats on retiring! I retired on 11/29/19 and very glad I did as I would have been in the thick of a lot of "work from home" responsibilities. Joints in my hands used to bother me some prior to retiring, due to heavy use of a computer all day. At my MO visit on 7/24, he again confirmed 5 years & done. I will have a DEXA scan in December and hope that bones are still no problem. For me, exercising helps and drinking lots of water. Consider myself fortunate at age 66 to be tolerating the AIs.
Re: Pandemic - Luckily, Zoom offerings by my local cancer support community and Silver Sneakers are giving me plenty of exercise opportunities (& a bit of isolation relief), as going to a gym is no longer an option. Like you, I enjoy a good book and alone time. Wonderful that you can take walks on the beach! Never been to the beaches in your area of NC - we usually visit Isle of Palms for our annual beach vacation.
PontiacPeggy - Hi there! No worries about your rant. I feel the same!
To all - Stay safe!
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Ranting - it does feel good, even if it does not change anything. Fortunately lots of hiking/walking close by, even if needs to be done early before it gets too warm. The local Y has found a way to open with reduced capacity not everything available. Had a nice camping trip. Local protestors are demanding an end to masks and restrictions, while at the same time demanding the right to sue if they get sick.
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Just wanted everyone to know that 5 years on this med can be done! I've been taking anastrozole and today I take my last pill. I've had little if any side effects (weight gain but really can't say it's the med or the Twinkies) and happy to know I've reached the finish line. You guys can do this! One day at a time, one step at a time, sometimes one minute at a time, but it can be done.
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ORknitter--I love when you old-timers check in to give us some encouragement. I must say I don't think about the AI much any more. I never had terrible SEs but either they've abated or I've gotten used to them. I'll be two years in this November. I am curious to see what life will be like off it, though. I've told myself even if more than five years is recommended, I'll take a bit of a break at the five-year mark.
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I finished up my 5 years last October. About the only change that I noticed after stopping was I am a bit less creaky when I get up in the morning. I had no problems with anastrozole. And I would have continued on if my MO thought it advisable. He said that given my dx and age (now 75) there was no advantage to continuing beyond 5 years. I trust him completely so followed his advice.
To those just starting out on AIs, don't go in thinking you will have terrible SEs. Most people never think that way when starting a medication - like a new antibiotic, new asthma med. I guess that's why I'm rather surprised when people assume they will have problems. That is not saying that a lot of women do have problems with anastrozole, because they do. But many more have few if any problems.
I'm thankful I had this wonderful medication to help prevent a recurrence of BC.
HUGS!
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Does Anastrozole make your Cholesterol go up? What the heck? Two days prior to starting it, my Cholesterol was 222, HDL 103, LDL 104. Six months of taking Anastrozole, my Cholesterol is 237, HDL 84, LDL 138. That has to be the only reason it's so bad. I eat well and I haven't changed anything else in my diet. I'm waiting for my doctor to call to go over these results. I think there was some talk about this a few pages back. What are you doing or taking to bring these numbers down?
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Tiny - it seems as if estrogen does play an important role in regulating cholesterol, both LDL and HDL. Since AI blocks production and Tamoxifen blocks receptors.......................... Maybe that explains why I saw my numbers change as I became menopausal, and the AIs probably make it worse. I google estrogen cholesterol and found this.
https://my.clevelandclinic.org/health/articles/169...:~:text=When%20estrogen%20levels%20decline%2C%20levels,to%20heart%20attack%20and%20stroke.
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Bluegirl, thanks, I guess that makes sense. My cholesterol has always usually good. Back in January I had my ovaries taken out. I don't have any estrogen left February my cholesterol was fine. Then 6 months of Anastrozole my numbers went crazy.
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I have been on atorvastatin and my cholesterol count has dropped like a rock. Well under 200 which it had never been before.
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My cholesterol went up this year after a year on arimidex to 226. I've never been over 200 before. My blood sugar is going up as well as my heart rate. I quit taking arimidex during my DIEP surgery and started back taking it every other day. I am thinking of staying there. The hot flashes and joint pain are much more manageable. I know it's not ideal but I figure it's better than nothing, which I've also considered. I do miss estrogen.
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Started arimidex 2/17 after my lumpectomy, taxol/ herceptin, and radiation. Quickly developed aching joints, and I already have pretty bad osteoarthritis. Switched to letrozole and no change. Then onto aromasin, not !much better. Also took several breaks along the way. Then in 2018, developed osteoporosis, and 4 of my vertebrae collapsed. So now held together with 2 rods and 6 screws. I also get zometa infusion every 6 months. Continued on aromasin until 1/20, and just gave up. MO said it was entirely my decision, aIthough I was strongly ER+. Now 8/20 mammogram was abnormal and scheduled for biopsy tomorrow 9/3. Started back on arimidex this week, and fear of recurrence as been a great motivator to stay the course!
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i take Gabapentin 100 mg in the morning and 300 mg at night. It helps tremendously with hit flashes and somewhat with joint pain. As well as 20mg Paxil together I get some relief. Just starting to have hip pain not sure what that is all about!
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Hi, I just joined this forum. I am in a dilemma that maybe many of you have already faced. Maybe you can help me with this decision. My surgery for bilateral lumpectomies was in May 2020 and I finished radiation in June 2020. My MO wants me to start taking Anastrozole now, I've been putting it off for two months's because of its side effects. I have had significant hot flashes, 15-20 daily including at night since going off estrogen in May. I've been miserable and this is before taking Anastrozole. Then I read a blog and some women are reporting joint pain, aches and irreversible bone loss resulting in osteoporosis. I take Fosomax for osteopenia and I have arthritis. I am considering not taking the Anastrozole at all. I'm turning 70 next month and I wonder if quality of life now isn't more important than a possible recurrence of breast cancer in the future?
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Hi Flowerlover2020, I know what you mean I just turned 69 in May. I am on Tamoxifen because of osteoporosis. In the past I was on Fosamax for 3 -years. The Tamoxifen has its own set of side effects because of that I only took half a dose for awhile. I took gabapentin 100mg at night and that seemed to help reduce the night sweats. I changed my MO and she wants me to go on Boniva monthly and switch to Anastrozole. I'm not sure I want to do that. I now take 10mg of Tamoxifen in the AM and 10mg in the PM and that seems to be working for me. I also take magnesium for the leg cramps and fish oil for the dry eyes. Right now it is the insomnia side effect. So far I'm dealing with it, but it is always in the back of my mind to quit. You can give it a try and see how you do. Good luck to you!
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FlowerLover2020, yes, there are women who suffer awful side effects from anastrozole. But there are also many who don't. Bone loss is a concern. I took Fosamax for 5 years. My osteopenia stayed the same. I was 69 when I started it. And just finished up nearly a year ago. Perhaps your hot flashes won't be any worse on it than off. Going back on estrogen is obviously not an option. I would recommend giving anastrozole a chance and see how you are on it after 3 or 6 months. If your QOL is worse, then see what other options you might have. You also may do just fine. Your hot flashes will remain the same or maybe they will eventually lessen (we can hope!). You just don't know how you will do on anastrozole until you try it. And there are two other AIs that can be used. Good luck with whatever you decide.
HUGS!
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Wondering if anyone on anastrozole for a longer period of time has developed Entropion (your eyelid turns inward so that your eyelashes and skin rub against the eye surface--generally it is the lower eyelid) . I was recently diagnosed with this and at first my MO said it was not from the anastrozole. . but then as she was talking about things that can cause the Entropian said "things that can factor into Entropian are things like dry eyes" . . you could see she was rethinking that. . . Then she said she has not heard of it as a side effect before, but said there might be a possibility the anastrozole played a part because it dries everything out. . . has anyone on anastrozole ever been diagnosed with that? I've been on it for 2 years and 3 months at this point.
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Thank you flashlight for your reply. Interesting, does your MO want you to go off Tamoxifen and onto Anastrozole because she thinks it’s more effective against recurrence?
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Hi Flowerlover2020! I was 55 when I got BC diagnosis. Had lumpectomy, chemo, & radiation. Started anastrozole in April 2014. I've always taken vitamins & supplements & have continued to do so., some of which hopefully mitigate some of the side effects. I've had side effects, but nothing that I haven't been able to manage, sometimes with help: hot flashes at night, moodiness/anxiety/depression (started bupropion in 2018 and it made a HUGE difference!), dry eyes (were dry B4 anastrozole b/c of blephorospasms [eye lid spasms] & got Botox shots to stop the spams [lasted 9-12 months]; haven't gotten Botox in several years; use couple of Systane products every day), bone/joint stiffness (yoga, exercise, & massages help), fatigue, weigh gain, insomnia (was already taking 5 mg zolpidem & continue to do so). My oesteopenia was very slight & hasn't changed. My cholesterol is slightly elevated from before BC, and I continue to take Red Yeast Rice/CoQ10 to help keep it lower. At the 5 year mark, my Dr wanted me to take it for another 5 years, and I only agreed to take it for 2 more. I will re-evaluate in April. So far, I've chosen to tolerate my SEs and get help for them, where I can. I probably will not continue anastrozole, once I hit the 7 year mark next April.
I agree with some of the other posts, and encourage you to try it. Because we are all different, this med will affect each us differently. Each of us needs to weight the degree of SEs versus quality of life.This forum has been very helpful to me, so I'm glad you found it!
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Thank you Pontiac Peggy. It probably does make sense to at least try it. The only thing that stops me is when I read that the bone loss can occur as quickly as 3-6 months on Anastrozole and is irreversible. But after reading some of these posts, it doesn’t sound like that happens often. Definitely helps to read some positive outcomes as opposed to all negative ones
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Thank you Pink Longhorn. It sounds like you have been on this med for a long time so it’s comforting to hear that the side effects can be managed. My MO didn’t tell me about side effects when we discussed my taking it so I was pretty surprised when I started reading blogs about all the negative ones. I’m feeling a little better now about at least giving it a try. I sure don’t want the BC back! I am also glad I found this forum
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Hi mysticalcity!
I was diagnosed with blephorospasms [eye lid spasms] in 2005. They were bad enough to impair driving. Restasis didn't help. Botox shots around my eyes really helped & spams would stop for 9-12 months. I haven't needed Botox in several years. I use Systane Ultra eye drops during the day & the PM ointment at night. Since I started taking anastrozole in 2014, I noticed my eyelids occasionally folding into the eye, as you described. Never associated it with dry eyes & anastrozole. I will mention to my oncologist & ophthalmologist.
Thank you for mentioning! Hope the Systane products provide some relief.
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Shame on your Dr for not mentioning side effects! I've been blessed by a Dr who gives me all the details and works with me on what I choose to do. Let us know how you do!
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Flowerlover2020, Yes, she does think that if I can protect my bones I should change. Here is a chart of possible side effects. https://www.breastcancer.org/treatment/hormonal/co...
I just read this on another post. Aromatase inhibitors aren't less toxic or better tolerated than tamoxifen, rather "both drug classes have distinct adverse event profiles that are relevant to individualizing therapy for patients," according to the update.
The newer class appears to increase serious cardiac disease incidence, though by less than 1% compared with tamoxifen, as well as high cholesterol, hypertension, bone mineral density loss, fracture, uterine cancer, benign endometrial pathology, hysterectomy, and vaginal discharge.
Tamoxifen, on the other hand, raises venous thromboembolic event risk by 1% to 2% compared with the aromatase inhibitors and is associated with more hot flashes. (It also has the side effect of uterine cancer, cataracts, and vaginal discharge)
The advantage in reducing risk of recurrence with the aromatase inhibitors in absolute terms is modest, "typically amounting to less than 5% through multiple years of follow-up," and without any difference in overall survival.
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flashlight, thank you so much for including that link. Its so incredibly helpful! I hadn’t seen that before and it clearly shows how the side effects of all the drug therapy’s compare. It really does look like Anastrozole has the least amount of side effects of them all. Of course it also depends on everyone’s own interaction with them. I have decided to try the Anastrozole. I took it today. I really appreciate yours, and everyone’s help with this decision.
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this site is so confusing; how do I find current reply’s instead of stuff from 10 years ago. I have been on the armada. Since April 2020. Do the excessive sweating ever go away. I change clothes 2 or 3 times a night
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