For Arimidex (Anastrozole) users, new, past, and ongoing
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sure, they get a commission every month from your $$$.
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Sweetandspecial, I had trigger thumb twice a few years ago. First time, the hand surgeon suggested I try a cortisone shot instead of the 10X costlier tendon-release surgery. It worked for three years. Got it again, just as I was about to leave on a concert tour. So he gave me another shot, and the day after I returned home he flushed it out of the joint as part of the tendon-release surgery. Couldn’t play guitar for a couple of weeks due to having to grip the neck with that hand (but was instructed to start playing dulcimer again two days post-op as part of my physical therapy--there is no neck to grip on a lap dulcimer). So I’m not afraid of trigger-thumb-or-finger because it’s easily treated.
Just curious--on another thread I read posts by some women indicating they were on AIs simultaneously with radiation treatments. My MO wrote me the Rx but said to wait till after RTs before I start taking it. Anyone here take an AI concurrently with radiation?
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oh course they do! so I use their advise only as it works for me! used to freak me out as what do I do if my money runs out? but in reading all the nasty scare articles, I think I am fine and as frugal as I need or want to be
hey, my heirs are my nieces and nephews so hoping they are not sitting on their butts waiting for me to kick the bucket!
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May be putting you all on the back burner soon and heading over to the Tamox thread. Dexa shows getting osteoporosis in spine so will discuss with MO next visit (Nov 16) if should switch to Tamox. Whee, are we having fun yet???
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ChiSandy, my MO had me start my anastrozole the day after I finished my rads. The only reason that made sense to me (and none was given) is so you can tell if you are having SEs and what is causing them. Perhaps there are better reasons. Dunno.
HUGS!
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Patoo, dang. Not the best of news. Keep us posted on what you decide to do.
HUGS!
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ChiSandy, I started on Armimdex a few days before I started Rads. Neither MO nor RO thought there was a reason not to do so but I believe most, not all, on this thread started after rads.
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Just picked up my first prescription for anastrozole tonight. So happy to see it is the Teva brand. I'll take my first dose tomorrow. Fingers crossed no major SE's. I had a horrible case of moist desquamation from rads. I was in unbelievable pain for 3 weeks. This week was my first time back to work and it wasn't easy. Still in a lot of pain but at least my skin has grown back, I'm out of bed and not covered in aquaphor and lidocaine 24/7. It was hell!
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Meezer, that's awful. I'm glad you seem to be healing, finally, from your rads. I can't imagine how awful it has been for you. Sorry you're still in pain. I hope that your Arimidex journey is boring and uneventful!
Very gentle hugs!
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I was told by my RO that she didn't want me on anastrozole during rads so SE's don't get confused. However I already started since I was told by my MO, BS and second opinion MO to start. So far no big SE's.
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BCO used to have a live 'Ask an Expert' forum & their topic happened to be radiation & anti-hormonals right when I was starting rads. At the time the experts said that it didn't matter if you starting during or waited until after. My doctors were neutral, so I choose to do radiation first, but they had me start Armidex the day after I was done, so if I was going to have SE from either, they would have overlapped anyway because the radiation stays in your system for about two weeks after you are done.
Peggy, you asked if it was scary to be done with Armidex. When I first started, I was, "I want to be on this forever & I don't care if my bones crumble or whatever other bad health things could happen either." As I got further out from treatment, I started to regain some perspective and could look at the personal pros and cons for ME. I was only mildly estrogen positive (and pr negative), node negative, I did both chemo & rads, and none of the clinical trials have as yet said that staying on longer does any good (a friend's doctor commented that if a big gain would have been shown, it would have been leaked by now). The oncologists around here are still going with the 5 year recommendation (and mine said that he would not advise more than 7 years for anyone at this point). So, as I got closer to the 5 year mark I got more comfortable with the idea of being done.....and it was scary, but also liberating too. I continue to do all the lifestyle stuff (okay maybe not all because I am eating the peanut butter cups I bought to pass out on Halloween at the moment!) and feel, at this point, that I have done, and am doing, my part and the rest is in God's/Fate's hands. (I do want to add that since everyone's diagnosis & circumstances are different, there isn't a 'right' answer as to what to do after 5 years. One size does not fit all!)
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Thanks, Ruth. I really didn't know. I'm 4 years away from that milestone. Right now I feel it is very comforting "doing" something. No chemo for me. Perhaps that makes a difference in outlook. I didn't think there would a one-size-fits-all but was trying to see what you all felt. Guess I just wanted to explore how I might feel when the time comes. I really appreciate your sharing.
HUGS!
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Who knows what they will be saying in four years! But being Stage I and in your 70s by then (little estrogen left to circulate), my bet is that you will be advised to be done (unless something startling is revealed in the research).....hopefully things will be more clear by then so that it is not such a shot in the dark.
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True, Ruth. I hit that milestone birthday in July (how can I be that old? I feel 50). If I read my reports correctly, my ER/PR levels were quite high. I would like the research to be strongly one way or another.
HUGS!!
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I was just at my MO's last Monday and, as I've just completed 4 years of Anastrazole, I asked him about the probability of going past 5 years. He, like Ruth's MO, said if the results were clearly positive they would have opened the study and/or there would be some information "leaked". For me, he won't suggest 5 years more because I've suffered so many SE's. It's taken major perseverance to make it this far.
His opinion was that there may not be a major survival benefit due to the toxicity of the AI. In other words, you may not have as high a chance of dying of cancer, but you may well die of something else. The thing that really caught my attention was a throw away remark he made about the possible effect of estrogen deprivation on cognition. That's of particular relevance to me since all my maternal female relatives (at least 7, by my count) developed dementia as they aged.
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Chi Sandy--my MO had me wait until I had healed from my radiation---but I do know there are more than one way to skin a cat......I think it depends on a lot of personal factors regarding your cancer.
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Kathy, good for you for sticking with anastrozole even with SEs. I'm sure it's been hard.
Red, I suspect it is just the personal preference of the MO more than anything else.
HUGS!!
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Anyone else on the Bluebird make of Anastrozole?
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kmpod Interesting your MO called the aromatase inhibitor toxic AFTER you had completed the 5 years. IMO docs are reluctant to discuss possible adverse reactions to these drugs. Yes cognitive deficits are one of the SE because of the lack of estrogen. Unfortunately aside from bc,not having estrogen in your body is very unhealthy for brain, heart and bones.The truth of the matter is only 50 percent of women complete the 5 years due to SE. I just wish we could have an honest discussion about this and maybe just maybe docs will listen and more research can be done to find an alternative that in your doctors words are less toxic!
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I think the thing is that chances of recurrence are the highest the first two years, and then it drops again at 5......so for those first 5 years, the risk reduction you get from taking an anti-hormonal, for most people out-weights the risk of the other problems (because if it recurs, then the rest of it won't matter). While you are on it, you really have to purposefully double-guard the rest of your health (lots of cardio exercise for the heart, weight bearing exercise, vitamin D, prunes etc for the bones, intellectual stimulating activity for the brain). After 5 years, you really, really have to seriously weigh your risk/benefit ratio.
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Ruthbru. I think you are right. I just started aromatase. We need to be our own advocates. The local cancer center I was diagnosed at said I needed to do surgery, Radiation, Chemo and aromatase to avoid recurrence. I then went to a specialized cancer hospital and got a different recommendation. They felt that two often the physicians though everything at patients because there are not enough studies and testing being done. He did agree that because I was a very high ER/PR+ i would have benefit a significant benefit from aromatase. He felt chemo was over treating in light of the high ER/PR status. His feeling was that if I made it through the first 2 years with out recurrence I would most likely make it to 5 and beyond that was for breast recurrence only. He did not exclude developing a different cancer in a different part of my body. He also stressed the importance of a exercise and a health diet.
Note. When I went back to the MO and BS and told both of them no Chemo unless they could explain to me how the benefits would out weigh the risks both Dr's told me that if they had my diagnosis they would not do chemo either and do what I am doing but protocol based on my diagnosis required that I they recommend the works. Never did get my explanation.
Wondering how long it takes for side effects to show up.
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BrutersMom, Just curious as to why you think you will have side effects? Not everyone does. My MO asked me that same question before I started anastrozole when discussing SEs. I said I had no reason to expect them. He said we'll deal with them if and when they show up. And they haven't shown up. I'm not denying SEs, just saying not everyone has them.
Sure glad you went to that specialized cancer center. You don't need treatments that aren't going to benefit you. And that was a bit disingenuous of your original docs to say they wouldn't do chemo either when recommending it to you.
HUGS!
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PontiacPegg I was wondering because my BS and MO both told me to expect some side effects. That most women have some.
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BrutersMom, Interesting. That seems to be unusual for BS and MO to say that. Hope you have NONE!
HUGS!
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kmpod, Can you, or anyone else, elaborate on toxic effects of Arimidex?
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Peggy, I'm with you with wanting to do "something" and wondering how I'll feel when it is time to stop the AI. I was on Tamoxifen first (because I don't have great bones) and when I made the switch to an AI, my hot flashes stopped and I started sleeping much better. It took three doctor's visits where I'd ask "are we sure the drug is working" before I calmed down. To me, the hot flashes and sleep disturbances (two were probably related) were signs the medicine was working. My MO says lack of them doesn't tell us anything about how the AI is working because it is a different mechanism. The truth is, we don't know but like others, I eat my vegetables, go walking (now that my sore foot has healed), and need to work harder on my bone strengthening exercises (got not-so-good DEXA results recently). My MO says we'll plan for a full five years on the AI and see what the research says then. Like you, one year down and four to go. He's a very research-based kind of guy. He's experienced (meaning older) and often will quote studies going back quite a long ways with the ones most recently released. He also really listens, may run late on his appointments, and recently closed his private practice and moved to head up the breast cancer clinic in new university-affiliated NCI designated cancer center that opened in our city. I feel lucky that I found him to be my doctor.
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I don't think it is the anti-hormonal that has ' toxic effects'; it's not having estrogen that can cause the problems dtad was talking about.
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Thanks Peggy!!
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Meezer, you're welcome!
Golden, my MO is slightly older than me and seems to be right up on things. If I do come across something that he hasn't seen, he's very open to exploring it. Guess we'll just have to see what the latest thinking is when we get to our 5 year mark. My MO is not sure 10 years is good but he's also not sure it isn't good.
HUGS!
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I agree with Ruth - I don't think the AIs have toxic effects but the lack of estrogen does. But I disagree that recurrence happens within two years and then again at five - mine recurred at four years after I spent three years on AIs so once again there are no answers just questions and sad to say our oncs are the least likely to tell us what we NEED to hear.
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