For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Shortcake42: I've been on Arimidex for a week now and the insomnia is setting in, just about the same time it did with the Femara. I take it in the morning. Was hoping a switch would help. My mind races and thinks of all sorts of things when I wake during the night and it takes me hours to fall asleep again, or not at all. I take hydroxizine, which is a prescription anti-itch medication. It worked like a charm until I started taking the Arimidex. I just bought a supplement with a whole bunch of natural ingredients called Luna, but I haven't tried it yet. Going to try it when I'm on vacation for 3 weeks.
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Lula73, That was an interesting article. I thought our recurrence rate peaked at 6 years then went down. According to that article, not so for T1N0 like me. Why can't the doctors give me straight answers?
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So glad your pharmacy will switch to TEVA brand.
I have kept a chart of my side effects under the first brand for almost 90 days. I will do the same for the TEVA brand for about 90 days. If I am not seeing QOL improvements, I will ask for the name brand. I found on line where I can purchase it for $1.00 a day from the manufacturer should my insurance refuse.
I am doing all I can to make it for 5 years. I TRULY understand why women elect not to. I long to feel like my body is mine and not a chemically changing factory my soul tries to live in.
Thanks again to everyone's postings. This has been a valuable forum for me.
Coach Vicky
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Hi everyone - so about the recurrence rate question - the risk for ER+ will continue to decrease after 5 years, but the rate of decrease is not as fast as triple negative, so the risk for ER+ will be higher than the risk for triple negative patients. In other words, your greatest risk for recurrence is in the first 5 years, no matter what your ER status. After 5 years, the risk for ER- drops to near 0, while the risk for ER+ also drops a lot, but is a little more than than it would be for ER-. Hope this helps!
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gandma3x---thanks for the clarification. I just really hope that article I read stating the opposite is false information. I've been worrying all week. Then last night I read about a woman who, several years ago, had the same cancer and the same treatment as I did. Her has now come back in the same breast and she is now considered stage 4. I wonder how that can happen after going through such a harsh treatment? Cancer is a nasty, horrible, awful thing.
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Seq24 unfortunately once we've been diagnosed with breast cancer we can always have pregression. Most don't and statistically it goes down after the 5 year mark. I'm wondering if that's why more oncologists are recommending 10 years.
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Nancy618, Thanks for the info. Let us know how the Luna works. I have been alternating every three days (my daughter's suggestion). Will see what happens. I really don't want to take a chance on getting hooked on something.
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I agree I'm beginning to find I'm waking up in the middle of the night. No problem during the summer but I'll be heading back to work in a month. I'll need quality sleep with a classroom full of 1st graders.
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Question ladies....Recently when I for instance start cleaning up my house or washing clothes...my lower back starts hurting real bad...is that a s/e if the arimidex? Has anyone else experienced this?
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nayds I have back pain as well. Hard to know age or meds.
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I know right @ kira....I don't know if it's because of my age or this new medicine..I am going to start writing these things down and ask my MO when I see him in August...thanx for your response🤗
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Hi Nayda! Once again, we have something in common. Good grief! We have been through it all together! I too have back pain and it has now moved to my hips. What's funny is that it is the same areas that hurt as did when I was doing Taxol chemo in Nov/Dec/Jan. I had a physical with my primary care dr yesterday and mentioned it to her. She said I have bursitis. I still think the pain is from the anastrazole and I am going to talk to my MO on Monday when I see her. No sense in going through treatment or physical therapy or however bursitis is treated if that's not what it is.
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Hey Seq!
I didn't feel these pains til I started taking this med...my lower back and legs start to hurt when I am cleaning up...if I am just standing I am fine..I stopped the calcium/vitD...because it was making me constipated....imma start back taking it that tmrw hopefully that make a difference...always something.lol...what made your pcp think it's bursitis...did they do any tests?
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Nayda--they didn't do any tests which is why I'm wondering if that's even what it is. She asked where it hurt and she said "oh you have bursitis". She wants me to come back for a cortisone shot which will only temporarily solve the problem anyway. The aches and pains I had in that area during chemo went away soon after but started up in the same place shortly after starting the anastrazole, which is why I'm waiting to ask my MO before I go back to the PCP. It seems like the more I am on my feet the worse it hurts. It's getting to the point that if I sleep in the same position all night I can barely move in the morning. Interesting about the calcium/D. I never made the connection but guess what, yet another thing in common. I'm having the same problem. I'll add it to my list for the MO on Monday. I was told to take Citrical D. What are you taking?
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Seq24, I had bursitis about 6 months after starting Arimidex. The doctor moved my leg around and asked where the pain was and said bursitis. He gave me some exercises to do and it went away. I believe the AIs can dry out the bursa sacs in our joints.
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I had bursitis in my elbow about a year ago, which was 2 years after starting Anastrozole. It started bothering me on a Wednesday (pain, tenderness, and significant swelling), I was diagnosed that Friday, and he set up an appointment for me to get a cortisone shot on Monday. By that Saturday it was much better, and on Sunday it was completely normal (like I'd never had an issue).
I cancelled the Monday appointment and haven't had a problem since then which was around a year ago. I never thought to blame it on an Anastrozole side effect. I guess I'll never know if that had anything to do with it.
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I'll post again about the bursitis as soon as I get an opinion from my oncologist. It just seems too much of a coincidence for it not to be related to the anastrazole. I guess if this is my only side effect and a cortisone shot can fix it then I'm not going to complain. I consider myself very lucky to not have anything worse.
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I'm looking for some help. My MO told me I should go on Anastrazole. Originally my biopsy showed ER- and after surgery it showed ER+ but only 1-2%. I know the Anastrazole has side effects and the biggest I'm concerned about has to do with my bones because I already have osteoporosis and issues with arthritis. Doc said she could give me Prolia for the osteoarthritis .... I wanted to talk this over with my PCP who knows me the best....but she is away until the end of July. I did speak to a nurse navigator associated with my RO's office who said that I have time to make this decision. My thing is I want the benefits to outweigh the risk! But if I am only 1-2% ER+ is it worth it?
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I can't imagine with dcif the advantages would outweigh the disadvantages but I'm certainly not a professional.
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Hi Nayda:
I started Arimidex May 8th and by mid June I had a very sore lower back. It would only hurt when I bent over to get clothes out of the dryer at first. Now, if I go for a longer walk, my knees hurt and my back kills me. I have never had this before so I assume its the Arimidex.
wallan
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Me too @ Wallan...I saw my RO today for a follow and told them about my lower back pain and leg pain..they ordered me a bone density scan and was like why haven't your onc ordered it for you before you started this med...I was like Idk...I told them that I stopped the calcium/vitD b/c its causing me constipation...that said I need to start back taking it and also take a stool softener..I am like goodness..another med to add to the list uggh!
@Seq...I am taking the calcium 1200mg/vitD 800mg..aka "horse pills"..haha
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We were having a cancer round table after church on Sunday (so many survivors!). An animated topic of conversation was having to take one drug to countermand the effects of another. It just seems to keep snowballing!
MJ
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Tappermom, I couldn't agree with you more. The pile of pills seemed to just get bigger. However, I currently feel as well as I did pre-cancer so will keep attaching the pile. I think I will have to come to grips with the bone density issue. Up until now, I have told my primary that I didn't even want a test because I wouldn't take the medication even if he found something. My MO hasn't talked about osteoparisus (not spelling that right) as a SE of AI but I know it's there. I have been taking Glucosimun and Chrondican and Calcium with Vitamin for my arthritis for several years with some relief. My husband has done the shots for his back pain and is pleased with the results. So what next. MO's office called and scheduled my 6 month mammogram and another echo. Almost half way through herceptin. And the pile of pills...
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Just got back from the oncologist for my 3 month follow up after starting anastrazole. She said I definitely need to go in and be treated for bursitis in my hip. She said likely something was irritating it before and the anastrazole is just making it worse. If a cortisone shot doesn't work then she wants to order imaging.
And also, in regard to my previous post concerning late recurrence in hormone positive cancer. I asked her about it. She said that it is absolutely true that hormone positive cancer does have a higher recurrence rate after 5-10 years. She said that is the reason studies are pointing to being on the hormone blockers for 10 years rather than 5. I asked how much the recurrence percentages went up. She said after the first 5 years they go up 2% a year. In my case, I was told I had a 10-12% chance of recurrence in the first 5 years, so now it's 20-22% by year 10. That is a scary statistic to me! She said that after the 10th year, the recurrence rate goes down to .5% per year. To me none of this sounds real encouraging. But she did end the conversation that these statistics are 30 years old from European studies and when the study was done there were no AI medications, just Tamoxifen. She believes the percentages are lower now but couldn't give any specifics. Needless to say I'm more worried now than I was before I went in there
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Thanks KB. As you can guess, at the moment I am so upset about this latest news I'm sick to my stomach. I'm about to my one year mark and I thought things were going really well. Now within the next 9 years I can expect a 22% recurrence rate. I don't use this often but WTF!!! I thought this time around was going to do me in. Now I'm looking at a strong possibility of having to go through it again!!?? I could just sit here and cry. I asked my dr. why she didn't share this with me before now and she just said that "this journey has to happen in small bites". All she said was that they were 30 year old European studies and she believed that statistics had improved by now. She did mention a study done in Texas pertaining to the number of years being on an AI. She said that after we all have our surgeries, and as long as the margins are clear, we are considered cancer free at that time. Chemo and radiation are a precaution for any stray cells and the hormone blocker is the most important part of treatment, which I think we all knew. When I had asked for my original statistics and was told only a 10-12% recurrence rate I was very excited. Now all of a sudden we have doubled that. Apparently the 10-12% is for the first 5 years only and it sounds like the rest is the luck of the draw. I'm scared, worried, frustrated, angry and very upset at this new information.
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I keep reminding myself that my mother had breast cancer twice, in 1974 and 1983. Radical mastectomies and radiation, and she died 21 years later of COPD. No way to know hormone status, or even what type of cancer it was. Just have to hope for the best, and do what we can in the way of prevention
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seq24, it is difficult not to worry about statistics, but what helped me after being diagnosed 2 years ago was reading a couple of comments that people made here.
1) you either have a 100% chance of recurrence if it comes back or 0% if it doesn't. Worrying won't change that. 2) If it does come back, you have wasted precious time worrying. Just do what you can to enjoy life now and exercise daily. Exercise is one of the only proven ways to reduce your chance of recurrence.
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I completely agree with Peregrinelady. IMO it's a crap shoot. My MO also told me the recurrence rate studies are 30 years old! Just ridiculous! I remember when I first joined this forum and spoke to a young lady who stats were probably the best you can have and 8 years later was dealing with stage 4 metastatic BC. Don't want to scare anyone but that's when I decided I wasn't going to get hung up on stats. Good luck to all navigating this complicated disease.
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also good to remember that these are cumulative rates - from your MO's stats (which she admitted were outdated), there is a 2% risk each year between 6-10 years post-diagnosis. This also means that each year there is a 98% chance that you will not have a recurrence. And, each year that passes without a recurrence, the risk for that year is eliminated, so your cumulative risk shrinks with each passing year.
Happy Indepence Day
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I finally got peace and confidence with my stats when I demanded the MammaPrint test on the worse of my tissue. I think I finally got the test because I kept nagging
It was a hard fought deal to get the test. I had just about made up my mind to take Social Security early and now I won't.
I was asked by my MO Team what made the difference and I explained I know about me and not the general population.
I went from my MO's estimated 85% for the general population to 94.6% for me.
Coach Vicky
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