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Post by ss on Jul 25, 2021 10:42:13 GMT
I will be starting Arimidex after my final radiation treatment. My doctor told me to expect feeling like I’m 100 years old when I get out of bed in the morning. Oh boy.
Just wondering what your experience was? The other side effects don’t sound fun either🙄
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Post by miaow on Jul 25, 2021 15:20:01 GMT
I have been taking it for 4 years. I had a lot of joint pain when I first started taking it but after a few months, it seems to have regulated itself and I really only feel it in my knees. It has caused a lot of sleeping issues. I try to take it by noon every day. I hope that goes away when I stop taking it in a year. I also have lost tons of hair and now take blood pressure medication…also side effects. I am planning to take it the entire five years that I am told I need it, but it has had an effect on my life. I remind myself that it is worth it to have a lower rate of recurrence. My doctor offered to change my prescription to one of the other drugs, but they basically have the same side effects. Of course, it varies by person! You may have no issues at all! Best of luck and take good care of yourself!
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Post by elaine on Jul 25, 2021 15:40:05 GMT
I have been on it since November 2018. I will have to be on it for 10 years, because my cancer’s oncotype indicated a high chance of recurrence.
My hips ache, but I’m not sure how much of that is the Arimidex and how much is being 58 having gone through 8 rounds of chemotherapy that has left me without feeling in 6 of my toes. The worst side effect for me too has been sleep issues. Major sleep issues. Like, without medication, I cannot get more than 4 hours of sleep. It has been awful in that sense. But medication has helped. And I only have 7.5 years to go!
I take in in the early morning (before I get out of bed) with my synthroid.
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cathit
Shy Member
Posts: 47 
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Post by cathit on Jul 25, 2021 17:00:09 GMT
I just started two weeks ago. I have had a few leg pains, but I also had those due to the Neulasta after chemo. Nothing horrible, but not "normal". If this is the only side effect, I'm ok with that. But I keep reading that new side effects can happen anytime. And I can't decide if it's side effects or it's because I'm an overweight 66 year old woman. I'm on it for at least 5 years. I'm not sure what the percentages of reoccurence are if you take it vs not take it. If things get very bad, I will find that out and decide from there.
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Post by Zee on Jul 25, 2021 17:03:30 GMT
I will have to take it once I'm in menopause, I'm told by my oncologist. I've been on tamoxifen for almost 5 years and have 5 years to go. I'm 49 and hoping I can squeak by.
It took quite a while to get used to the side effects which were mainly joint pain and fatigue. After some months I started to feel a bit better. I take a vitamin D supplement and just started taking collagen.
Regular exercise helps me deal with the pain better because at least I'm sore for a reason, and I'm stronger and overall it helps my mental health a lot. The only time I really feel side effects is when they switch manufacturers on me and my body has to readjust. Which always makes me wonder about the efficacy...but whatever. That happens pretty rarely and only lasts a week or two.
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Rhondito
Pearl Clutcher
MississipPea
Posts: 4,660
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Post by Rhondito on Jul 25, 2021 20:18:40 GMT
I switched to Arimidex about 3 months ago after being on Tamoxifen for a year. I was having problems with muscle weakness which was having a big impact on my cycling. I've seen an improvement with Arimidex and another plus is that I've lost 9 pounds! I couldn't lose any weight on Tamoxifen no matter how hard I tried.
My hot flashes have also stopped; I don't know if that will be a permanent change but for now it's a welcome relief.
I will have to take it for a total of 10 years so I have a little under 9 years to go.
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Post by Zee on Jul 25, 2021 20:20:29 GMT
I switched to Arimidex about 3 months ago after being on Tamoxifen for a year. I was having problems with muscle weakness which was having a big impact on my cycling. I've seen an improvement with Arimidex and another plus is that I've lost 9 pounds! I couldn't lose any weight on Tamoxifen no matter how hard I tried. My hot flashes have also stopped; I don't know if that will be a permanent change but for now it's a welcome relief. I will have to take it for a total of 10 years so I have a little under 9 years to go. Thank you, this gives me hope that if I have to switch before my ten years is up, maybe it won't be that bad since I can tolerate the tamoxifen. Weight loss is really hard, I agree! |
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Rhondito
Pearl Clutcher
MississipPea
Posts: 4,660
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Post by Rhondito on Jul 25, 2021 20:30:38 GMT
I switched to Arimidex about 3 months ago after being on Tamoxifen for a year. I was having problems with muscle weakness which was having a big impact on my cycling. I've seen an improvement with Arimidex and another plus is that I've lost 9 pounds! I couldn't lose any weight on Tamoxifen no matter how hard I tried. My hot flashes have also stopped; I don't know if that will be a permanent change but for now it's a welcome relief. I will have to take it for a total of 10 years so I have a little under 9 years to go. Thank you, this gives me hope that if I have to switch before my ten years is up, maybe it won't be that bad since I can tolerate the tamoxifen. Weight loss is really hard, I agree! I was an odd bird because I didn't know I had gone through menopause. I had my first round of chemo in Nov. 2019 and I never had a period after that. Up until then I had always been very regular, even at 51. My oncologist had to do some blood tests before she switched me to Arimidex and they showed I was post-menopausal. Surprise! |
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Post by Zee on Jul 25, 2021 20:34:08 GMT
Thank you, this gives me hope that if I have to switch before my ten years is up, maybe it won't be that bad since I can tolerate the tamoxifen. Weight loss is really hard, I agree! I was an odd bird because I didn't know I had gone through menopause. I had my first round of chemo in Nov. 2019 and I never had a period after that. Up until then I had always been very regular, even at 51. My oncologist had to do some blood tests before she switched me to Arimidex and they showed I was post-menopausal. Surprise! Since I had a hysterectomy before the cancer, I have no way to tell without lab tests. They check once a year, used to be every six months but they said my levels were nowhere near menopause yet (I still have my ovaries). My mom was about 54 when she went into menopause, and that's when I'd be due to stop the tamoxifen, so we'll see I guess! |
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RedSquirrelUK
Drama Llama
Posts: 6,730
Location: The UK's beautiful West Country
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Post by RedSquirrelUK on Jul 25, 2021 21:40:15 GMT
Someone I know started on Letrozole but had to switch to Tamoxifen because of the side effects. That gave her different side effects but even worse and she's made the decision to stop taking anything. She's in her 70s and decided that quality of life is more important than quantity.
I'm supposed to be starting Letrozole (same family as Arimidex) after my chemo finishes in October, for 10 years.
I'll be honest, I'm worried. I've always been far better at getting the side effects of anything than the effects. I struggle with pain control meds, so if joint pain (which tomorrow's chemo is supposed to give me as well) then I'm in trouble because I can't take aspirin, ibuprofen, codeine or morphine.
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Post by shessoaverage on Jul 25, 2021 21:51:11 GMT
I've finished surgery and radiation and have been taking Tamoxifen for about a month. I went through menopause very prematurely about 30 years ago, so definitely postmenopausal. My oncologist gave me the choice of being on an AI drug or Tamoxifen. Since my tumor was 3mm and low stage/low grade, and because I have no family history of cancer, but tons of history of high blood pressure, heart problems, and high cholesterol, all possible side effects of AIs, I went with Tamoxifen. Also, I already have pretty severe osteopenia, which AIs can make worse. Who knows if I chose correctly? No real side effects yet. I've never really stopped having hot flashes since menopause, so I can deal with those.
I hate that a doctor is telling a patient to expect to feel awful. Having gone through cancer is already crappy enough. My onco said 50% of people have no or very minimal side effects from AIs. I'll keep my fingers crossed that you're in that 50%!
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Post by ss on Jul 25, 2021 21:54:05 GMT
I am so sorry to hear about the struggles. And more for each of you, then what I may encounter. The doc said I can start as soon as radiation is done. I need to find out if that means Tuesday.
You all are in my thoughts and prayers.
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melissa
Pearl Clutcher
Posts: 3,912
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Post by melissa on Jul 25, 2021 23:34:50 GMT
Everyone is different. Arimidex caused arthritis in literally every joint in my body. Had a drug holiday and tried tamoxifen. Barely noticed I was on anything. After 5 years, we tried exemestane and I did pretty well on that.
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Post by KelleeM on Jul 26, 2021 0:46:50 GMT
I’ve been on Arimidex for about 6 years. I tried two other meds that were worse and settled on this. I’m 59, overweight and not very active so I attribute a lot of my pain to my laziness and other issues. I have at least 4 more years to go. I tell my kids I’m old, tired and cranky…all true, sadly.
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