For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Octogirl, Here's hoping that the switch to Femara is a good one. Fingers and toes crossed.
Lunderwood, Glad that you are doing well on Arimidex. I've been on it for about 1-1/2 years with no issues. I'll stay on it as long as my MO thinks it is necessary.
HUGS!
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Peggy.... Thats the part I don't get. We take the drug to lower our estrogen so why can't we have it tested to see if the anti hormones are being metabolized correctly and doing their job?
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octogirl....I know you are. My issue is why we are not tested during anti hormone treatment? I don't see how they are prescribing a treatment where the prime focus is lowering our estrogen but then not testing to see if its working?
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dtad, don't know the answer to that question, but I wonder if the AIs are effective enough that the MOs don't want to use estrogen levels as an indication that they aren't working? In other words, in some patients, perhaps even a slight reduction of estrogen from the AI is considered worthwhile, so they don't really care what the estrogen levels are for post menopausal women? (as opposed to before treatment when they apparently do want to know if the woman is already in menopause before decided which drug to prescribe). It is even possible that, given how effective the drugs have been, there may be some evidence that they work even if estrogen levels don't really go down? (just conjecture on my part).
Octogirl
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Peggy, thanks for crossed fingers and toes! Mine are also!
Octogirl
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Dtad, I don't have the answer to that question either. Possibly Octogirl is on the right track. Perhaps the way AIs work truly aren't measurable by ordinary means. I just don't know. We just trust that our MOs are right.
HUGS!
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The estrigen doesn't go down on AI's; they just bind with the estrogen to block it from being used by the cancer cells. So, it doesn't lower estrogen, per se, but lowers its ability to be used.
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Dtad, exactly as Sloan explained, the AI's change how the cancer can use estrogen. They don't stop it's production. So blood tests to measure estrogen levels aren't effective in measuring if the AI's are/are not working.
If you are looking for a blood test to measure AI's effectiveness, you can request a tumor marker test. There's several that onc's will use. I always have the CA 27.29 drawn and those numbers have a been a reliable indicator of my treatment's effectiveness. Tumor markers aren't reliable for all patients, but if you aren't having them drawn, you could request to do so.
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Sloan, I knew that! Why didn't I remember?? Argh!
HUGS!
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Here is the definition on BCO:
Aromatase inhibitors stop the production of estrogen in postmenopausal women. Aromatase inhibitors work by blocking the enzyme aromatase, which turns the hormone androgen into small amounts of estrogen in the body. This means that less estrogen is available to stimulate the growth of hormone-receptor-positive breast cancer cells.
This is Tamoxifen:
Tamoxifen is an "anti-estrogen" and works by competing with estrogen to bind to estrogen receptors in breast cancer cells. Tamoxifen is formally known as a selective estrogen receptor modulator (SERM). By blocking estrogen in the breast, tamoxifen helps slow the growth and reproduction of breast cancer cells.
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I have no medical expertise, but I do have a background in splitting hairs (as an attorney 😀). Maybe what the MOs mean when they say there is no way to test whether an AI is working is that there is no way to test whether it is working to prevent a recurrence. They can, however, test estrogen levels to see if it is working to block estrogen. I plan to ask mine to check my estrogen levels. I have Gilbert's Syndrome, which may affect the metabolism of my anastrozole. Anyone familiar with this?
Thanks!
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Kessa619.....Exactly! No matter how the anti hormones work ultimately our estrogen levels should be low! This is why women on it have side effects. I would be very concerned if they were not, especially post menopausal. I just do not buy the theory that there is no way of knowing until a recurrence! Tessa619 you're a great example of not being able to metabolize the drug. Again IMO most MOs just do not know enough about female hormones and this is why they don't test. Peggy....sorry but I trust my docs to a certain extent but not blindly. Also tumor markers are unreliable. My doc at a major university hospital in NYC will not run them because of it. I respect all your opinions and decisions. We have to do what feels right while battling this disease. Good luck to all.....
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did it get better with the switch in meds? My on is recommendin a full hysterectomy and then arimidex. It is the bet option to remain cancer free after the surgery but terrified about my quality of life with these meds
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Each one of us has to decide what works best for us. I very comfortable with no estrogen level testing. I had virtually no SEs going through menopause 25 years ago and have had none on Arimidex.
Dtad, obviously my approach doesn't work for you. That's fine. We can agree to disagree and still all hope that the Arimidex does its job keeping BC away.
Having Faith, If you are not menopausal now then having a hysterectomy will likely throw you into the world of hot flashes. Keep in mind that many women, me included, have no problems with Arimidex and most aren't active here. Ladies who post here often DO have SEs, some terrible, and they are looking for solutions to keep taking Arimidex. Do what feels right for you.
HUGS!
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Having Faith, you can have an oopherectomy without having a hysterectomy. Is there a reason for the hysterectomy other than wanting to put you into surgical menopause? Oopherectomy is a much less invasive surgery than hysterectomy.
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I am trying to catch up on this thread. I have been on arimidex since late January with side effects that are not constant, can't figure out what makes some days worse than others. I am getting Lupron and prolia shots too. So I'm not sure if one if these is worse than another. I started with foot and ankle pain, then that was better. Then mouth sores, and they got better. Then it was hands and wrists. Niw it's both. I feel as though I can barely walk at times. I don't want to stop just yet. I think any med will have side effects so I'd rather find a way for this to work. I took tamoxifen for 5 years, until 2010 then ended up with cancer again, so I am willing to limp occasionally if it keeps cancer away.
I am seeing a gyn/onc next week to plan oopherectomy. I don't want to do the full hysterectomy. There are more risks with uterine and/or cervical removal in regards to pelvic floor prolapse. I've got tissue expanders still in and have 1-2 more fills left. Hoping for one surgery with 2 docs so I can get oopherectomy and expander swap at the same time.
The things we go through to live!!! hope everyone has a great weekend
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BethL I started Anastrozole in January too and like you I experienced pain in my legs, ankles and feet first. It has progressed to my arms, wrists and hands now. Some days I struggle to hobble around. Even holding a pen and writing is painful but I want to try and stick with it for a while longer to see if these side effects subside. Initially I had issues with insomnia, constipation and headaches but those have all settled now so hoping the muscle and joint pain will settle as well given time.
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Peggy...yes agree to disagree! I think the fact that you had no issues while going through menopause is probably why you are doing so well on the Arimidex. I think thats great. Unfortunately a lot of women who are closer to their natural menopause are not so lucky. I respect all our decisions and opinions as we battle this disease. Just think its good to have an open discussion. Take care....
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My older sister when through menopause naturally, before me and still has issues with hot flashes. My mom didn't when she went through it. Even with chemopause (age 49) I would get some warm flashes at night but never sweaty. Now on the ESD I only get warm flashes at night when I eat hot peppers, especially jalapeno. Everyone is different.
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lago....my point to Peggy was that she stated she had no issues while going through natural menopause not just that she did go through it.I don't think anyone knows why some of us are more bothered by natural menopause or the anti hormone treatment. Im just saying I think they go hand and hand. Good luck to all......
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Each one of us is different and we react differently to the drug. I started on one manufacturer of anastrozole and had no problems. The pharmacy changes manufacturers and I had all sorts of issues and had to switch. The MO's office switched me to Femara and I had all sorts of side effects horrible hot flashes and night sweats, bladder and vaginal discomfort, and carb cravings. I am back on Anastrozole by Teva and the side effects are again minimal. Menopause was a challenge for me. Hot flashes, night sweats, mood swings, weight gain and more. Again each one of us is different.
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Dtad, I too have wondered about any connection between an uneventful menopause and uneventful Arimidex but so far that doesn't seem to hold up. Now maybe if you factor in time since menopause (which was uneventful) and starting Arimidex with no issues that might be significant.
Brutersmom, those fillers seem to cause more problems!
Lago, my mother seemed to have hot flashes (don't remember her age) though I had a few warm flushes which I thought were wonderful since I'm always cold. You'd think we'd resemble our mothers, wouldn't you?
HUGS!
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dtad, as I stated in my original post, tumor markers are not reliable for all patients, but they are reliable for me. I continue to use them as one of my many tools in monitoring my disease.
We can certainly have open discussion without attacking others' care plans. Please seek the treatment and monitoring that is right for you...and allow others to do the same.
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In response to Lottemarine from last week. My MO also recommended Zometa for bone loss. I had my 4th infusion last week. I was already at high risk since I went thru menopause at 42 and I have had regular DEXA scans since then. I had a scan right after I started Anastrozole two years ago and all three markers were in the osteopenia range - hence the Zometa. I just had another scan last month and two of the three markers are now back into the normal range. As my MO said, looks like the Zometa is working!. I do also take Vit D and calcium and have increased my amount of weight bearing exercises. As for the peach fuzz, I had that too but like Lago said, I think it's from the Chemo. I shaved it a couple times and don't really have much of a problem with it now.
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Pontiac Peggy and others:
My MO has recommended armidex (anastrozole) for me as well. He says without HT, I have about an 11-12% chance of lifetime recurrence, or developing cancer again. With the HT, that risk will be cut in half. I keep hearing about all of the SEs and part of me does not want to take it. But then I read your comments and realize that not everyone has SEs. I really did not have any issues during menopause so... I'm hoping that it will be the same with the Armidex. I am going to Europe at the end of May so I have decided to wait until I get back to begin taking it, in case I do have SEs like joint pain. My MO also said that if I decide not to do the HT, it still leaves me with a good outlook for the future. It's just that once you've had cancer, it certainly seems worthwhile to take every opportunity to keep it from coming back. I guess I will have to weigh out the SEs with the likelihood of recurrence, if it gets to that point.
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Kaneli, Do give Arimidex a try. If you have problems, try something else. I can understand waiting until after your trip to Europe. I'm glad that my experience has helped. I had no problem with menopause either. I have friends (not on this site) who also have had no trouble with it. So I wasn't particularly concerned when I started it. Good luck!
HUGS!
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BethL- I feel like I can barely walk at times too. It is depressing. I started Anastrozole on April 1. So far I have had misc headaches, lower back pain and achy joints. I don't know if I can do this. I see the doctor next week. I will have to see what she says.
PMR53
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PMR53....Im so sorry you are having such horrible side effects. Yes there are women who do great on it and Im happy for them. Unfortunately they are in the minority. I would speak to your MO about it. Maybe you could switch meds. Some women say the SE get better with time. Others say they get worse. Its very individual. Have you tried Claritin for the joint pain? Good luck and I hope you come up with a doable solution. I just think its important that you feel heard....
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PMR53...I had similar symptoms when I started too. I did start Lupron and Arimidex about the same time. My headaches were just about daily and lasted over a month then went away. The achy joints started off mild for me then worsened around the 4-6 month mark, but now has gotten better. I'm on my 9th month now and though I feel a little stiff and achy at times it is very manageable.For me I think it took my body time to adjust.
PB
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I feel so much better off the darn stuff that I am afraid to ask MO for the brand name prescription. I may have to try Tamoxifen like he wants me to. I hate not knowing what to do. I got worse every month from October to April.
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