For Arimidex (Anastrozole) users, new, past, and ongoing
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the AI depletes estrogen and lack of estrogen is the culprit of drying everything up... its amazing how much the lack of effects so many other things in our bodie
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petite - glad to hear you had a better day. I take my AI before bed & find I usually have one hot flash during the night, which seems to coincide with my need to make my bladder gladder after sleeping for about 6 - 7 hours. Now that I am retired & not on the computer all day, achy finger joints seem to be a thing of the past.
Re: dryness - Yes, the AIs seem to cause this. I now use a special mouthwash for dry mouth & also eye drops for dry eyes. Oh well, almost 3 yrs down & MO has stated 5 yrs total for me.
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Hi all,
Just a follow up from my last posts. Oncologist took me off Aromasin for a month due to severe joint pain, blurry vision and dry eyes, depression and exhaustion I was on that drug for 7 months. Went off it for a month and felt like I got my life back again, full of energy depression gone joint pain gone etc. So now we started a new one Arimidex. I have been on it for 3 weeks and in the second week the severe joint pain came right back with the exhaustion and dry eyes blurry vision. I told him about it and he told meto go off for 2 weeks and see how you feel. So that’s what I am doing there is only one more drug available I can try but I have to tell you if that one does the same thing to me I will stop taking that medication for good. It’s ruining my normal day to day life. I know everyone is different on medications but this one is just not for me at all.
Zeke
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I'm sorry, Zeke. I can relate. I was reading online yesterday about blurry vision (by the end of the day, I give up), and someone mentioned Bruder Moist Heat Eye Compress. I think we have something similar to this in my house somewhere, when my husband had trouble with styes. It is a beaded thing you heat up in the microwave. Might be worth a shot, I am going to do some further exploring in my house this weekend, I can't remember where it is!
We go through so much, chemo, surgery, and then they give us this little pill and nobody tells you this might be the worst thing to endure. Hugs, Lisa
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ZEKE My MO told me that for many women, the difficult joint pain and other issues get better in a few months, and this was true for me. 1 hour of daily exercise and drinking a lot of water makes me feel better.
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good advice always, Hiking Lady.
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I ordered one of those masks from: https://dryeyemasks.com/ It was just under $25 and it is on it's way already. We'll give it a try!
We are all different, and the path is not always easy, but please try and do what you can to offer yourself the best chance. I say this not only to you, my friend, but to me on days when I feel I cannot keep going. Hugs, Lisa
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I had to remember my own words last night, as the cramps were back! Feels like an electrical shock, or a fork being stuck in your leg! Could be worse I suppose.
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It seems like my joint pain takes turns with different joints. One day it is my middle finger, two days later my left wrist, two days later it is my back, two days later my index finger and today it is my right hip. I do think exercise helps.
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One other thought on joint pain. Sometimes the acupuncturist uses electric stimmulant with the needles, very very mild current, when I specifically want to focus on the joints (usually middle left). Sometimes it seems to help. I also think staying active, stretching helps. I have a Cando Hand Exerciser , 7inch medium, which I need to get back to using. I like it, can pick which finger(s), position, flex, extend. https://www.fab-ent.com/ https://www.fab-ent.com/exercise/hand-extension/cando-web-hand-exercisers/#100883 https://www.fab-ent.com/?s=hand+exerciser+web
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Is anyone taking cymbalta for joint pain due to AI? I read a study, asked my MO, and was given a script. Got it filled but have not started it since the joint pain has gotten better - not gone but much better. My hands are still stiff and trigger thumb is horrible. I have very bad neuropathy in my hands and feet ( thanks taxol) and I think the AI makes it worse.
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petite1 YES! Every day it is a different joint that hurts! Exercise...as hard as it is some days, definitely helps, as does drinking a lot of water.
What a journey we are on
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It is a journey!
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I am still on the fence. I am 70 and want the next two decades to be comfortable. Please put your age in posts for ppl to relate to (or not...). Thanks
I had a 1.7 Grade 1 tumor with no lymph node involvement. ONCA score of only 8! I am very, very grateful for that and it is always my first thought - how lucky I was. I did go ahead and have Bilateral MX. I have had trouble healing and have dealt with severe necrosis and a re-do one month after original surgery (she took out implants and replaced with bulky, painful TEs). This was so I wouldn't have to have chemo or rads. The BS said it wouldn't matter much if I didn't want to take "a pill" and I had decided to go with that and not take AIs. Then I went to MO and she pushed for me to take them and I have been a worried wreck ever since. Why do they do that? I have extremely low chance of recurrence and now she has put it in my head that "what if I don't take the AI and it comes back metastasized! I just needed to vent. I read all of the posts about how miserable they make you feel and it would only decrease chances a tiny bit. I would like to put this last few months ebhind me, already... and not have to go through side effects of the AI!
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Dayna, Hi -you are looking wonderful @ 70! I was diagnosed at 56, now 58, and hopeful to make it to 60 without something else breaking! I really can't wait to be done with this therapy in my early 60's. I am feeling pretty good. I'm supplementing and exercising my way through the lack of estrogen (if any at all!) has taken on my body.
I have one maternal aunt that was the first on either side of the family to get a breast cancer diagnosis. She and my mother were a family of 9 siblings! My father one of 5-2 female. Neither grandparents died of cancer. My Aunt was 70 years old @ diagnosis. She had low grade, lumpectomy, No radiation, and no AI. She is in her 80th decade now. My sister was 50 @ diagnosis and her disease if different and more serious than mine.
I would fully support your decision to opt out of the AI and don't quite understand your MO.
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Dayna1234 I'm 62. Taking an AI for 5 (or more) years reduces my recurrence probability A LOT, so I am committed to it. I don't have terrible side effects, and that's true for a lot of people. There's another thread called "Doing Well on Aromatase Inhibitors."
https://community.breastcancer.org/forum/78/topics/854403?page=42#idx_1238
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Dayna1234, I am 74. I started on AIs at 69 and completed my 5 years in October. I had no SEs that I could attribute to anastrozole. All my aches and pains, hair loss, etc started before BC. Keep in mind that not everyone has problems! It is your decision to take AIs or not. I was comfortable doing it feeling it was something I could do to (hopefully) prevent BC from returning. My MO said there was no benefit to me to go beyond 5 years. Whatever you decide, do NOT revisit the decision. Decide and go on with your life. AIs are quite doable for many of us in our 70s.
HUGS!
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Dayna--I assume you've run some of the calculators? I'm 62 and have been on Anastrozole for about 15 months. I can't say I've had no side effects but they are certainly tolerable. Keep in mind it's the people who have bad experiences who tend to post. Also, there are a number of ways to counteract the SEs, including exercise, which we should all be doing anyway. For me, the AI is more important in preventing recurrence than chemo or Herceptin.
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Thanks for the link, Inger.
I thought night before was bad, last night was worse. I try to be positive on here, guess I should take a break from being on here. Remind myself some people are going through something worse. Thankfully, I have the day off, and was able to get in a nap after getting up at 2:30 and giving up to the cramps. Seems like sitting in a recliner alleviates that lack of estrogen when your muscles can't take it. Man, when they start in your feet, and are in BOTH feet, it is a holy nightmare. I thought I had beaten this, but then again, might be peaceful sleep tonight and the next few weeks. I will admit, quitting does cross my mind.
Hugs, Lisa
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Sometimes I’d take a little break of a week or 2 if it was really getting to me. Never told MO about that, bad me!!
Have you tried quinine water? The stuff is NASTY without gin, but my cardiologist said it could help.
I get the cramps on letrozole too. Just this morning had leg cramps. At 4:30 am. Was not a happy camper. The magnesium citrate gummies really help me.
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I was 62 at diagnosis in 2016. Now 65 & will be on AI 3 years in April. SEs for me have been tolerable. Hands/fingers were more troublesome when I was working on the computer all day. Retired 11/29/2019 & they no longer seem to be bothersome. Have been exercising a lot more since retirement as well. Always have been a water drinker. I too, was very skeptical about the AIs, but decided if I could tolerate them, might as well throw everything I could at "the Beast" since I was highly estrogen positive. No hair loss experienced, no weight problems. BP & statins were already managed by scrips before BC - no changes to scrips or issues with either since AIs started. I use Systane Complete eye drops for dry eyes, which may have been present prior to AIs. Also use a mouthwash for dry mouth. Seem to have one hot flash at night, which oddly enough coincides with the need to make my bladder gladder as well, so no biggie.
Good advice from PontiacPeg, as always! All the best to you Dayna as you carry on with this journey.
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MO's comments when she started my on AI's was the "I was a young 71." She also said I should take them "as long as I could." I stopped in Jan. feeling like an "old 80." The predict model that Inger sent you told me it wouldn't make any difference. I plan to celebrate my 74 birthday in May AI free.
My suggestion is to try them. Many do OK. It does become hard to know what is age and what is something else. I also agree that once you decide, don't second guess yourself. The older we get the more we treasure quality of life. I also admit that part of my decision is that I don't want to die like my mother did of senile dementia.
Also, there is a thread for women over 60 you may want to check out.
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58 at dx, 60 now; Sunday starts my 3rd year on AI. I don't like what it's done to my body - dry eye, dry skin, et al. But I keep taking it because it's like an insurance policy. Will celebrate when I can stop taking it.
You have to do what's right for you, no judgement. HUGS
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I take my LAST Arimidex on the 5 year plan tomorrow. Like others have said I was happy there was something I could do since I was highly ER+. I tolerated it better at first and the last year I've "seemed" to have more problems but I tell myself I'm also 5 years older, 60 not 55. Everyone has to do what is best for them. This seems to be a drug that people tolerate or not. But maybe worth it to try.
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I am just starting my five year plan for taking anastrozole and wondering if there are any benefits to taking it at night or morning? Are there different impacts in sleep, side effects, etc? Is it better with or without food? Any other suggestions from those who’ve taken it are appreciated.
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Take it when you remember it, morning or bed time. Set alarm if necessary. Leave it where you will see it, a 7 day pill keeper helps. If you think it’s disturbing sleep, change timing.
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Dayna1234, I will be 67 next week. I was a stage 1, had a lumpectomy, radiation and now Arimidex for 5 years. I have been on it since Dec. I carry the mutant gene. My grandmothers on both sides had BC and my maternal aunt. My mother had ovarian cancer. I am taking it because it is in my genes.
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is anyone taking Gabapentin for pain
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I can’t, it is a good med for neuropathy and other types of pain.
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I've been taking Anastrozole for 3 days now and I notice that I often feel cold. Even while sleeping, instead of having hot flashes I feel cold. I'm not complaining about that as I'd rather be cold than hot and sweaty.
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