Arimidex

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janie560
janie560 Member Posts: 42
Have any of you decided not to take arimidex when diagnosed with estrogen positive breast cancer and not had a reaccourance?

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  • aisling8
    aisling8 Member Posts: 1,627 Member
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    No
    I decided to take it. I was afraid to begin, but afraid not to begin.

    I started off fine, then had problems with my feet, the soles were sore, and I hobbled after being stationary an hour or more. Lately, the only symptom i have is the hobbling which resolves itself quickly. I walk and do other exercise so it's not a problem.

    Maybe try Arimidex, see if you're one of the few side effect people.

    Best of luck to you,
    Victoria
  • roseann4
    roseann4 Member Posts: 992 Member
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    aisling8 said:

    No
    I decided to take it. I was afraid to begin, but afraid not to begin.

    I started off fine, then had problems with my feet, the soles were sore, and I hobbled after being stationary an hour or more. Lately, the only symptom i have is the hobbling which resolves itself quickly. I walk and do other exercise so it's not a problem.

    Maybe try Arimidex, see if you're one of the few side effect people.

    Best of luck to you,
    Victoria

    I've been on Arimidex
    for over 2 years and my side effects are minimal. I have not had a recurrence. I eat well, exercise often. That has been shown to reduce side effects. Hoverer, some people have significant side effects so I would suggest you try it and see how you feel. Good luck!

    Roseann
  • tufi000
    tufi000 Member Posts: 745 Member
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    not so far
    Been on it since 2003 and doc saw no reason to stop after 5 yrs since there weren't any studies about, he left it up to me and I am still on it.
  • SIROD
    SIROD Member Posts: 2,194 Member
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    tufi000 said:

    not so far
    Been on it since 2003 and doc saw no reason to stop after 5 yrs since there weren't any studies about, he left it up to me and I am still on it.

    For Tufi000 Please Check Again!!
    Dear Tufi000,

    Arimidex came out in the late 1990's one of the first aromatase inhibitors. I began treatment in 1999. Femara and Aromasin came later. There should be at least 10 years or more of data on Arimidex.

    Back in 2000, I remember an article I read about AI's. The doctor in the article stated that he "would love to see the bones of women ten years on this drug". Bones deprived of estrogen for a long time do have serious side effects. To say nothing about vaginal atrophy and the rest of the parts that need estrogen.

    Though Aromatase Inhibitors looks like a fairly benign drug, it isn't. It is a very potent drug. There is also the possibilities that the drug could turn against you. Instead of the protection you expect against cancer, it could become the problem.

    I suggest that you speak with your oncologist and perhaps a 2nd opinion and ask some of the points I have brought up. I do believe there is a lot of data on long term usage of this very powerful drug.

    Best to you,

    Doris
  • tufi000
    tufi000 Member Posts: 745 Member
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    SIROD said:

    For Tufi000 Please Check Again!!
    Dear Tufi000,

    Arimidex came out in the late 1990's one of the first aromatase inhibitors. I began treatment in 1999. Femara and Aromasin came later. There should be at least 10 years or more of data on Arimidex.

    Back in 2000, I remember an article I read about AI's. The doctor in the article stated that he "would love to see the bones of women ten years on this drug". Bones deprived of estrogen for a long time do have serious side effects. To say nothing about vaginal atrophy and the rest of the parts that need estrogen.

    Though Aromatase Inhibitors looks like a fairly benign drug, it isn't. It is a very potent drug. There is also the possibilities that the drug could turn against you. Instead of the protection you expect against cancer, it could become the problem.

    I suggest that you speak with your oncologist and perhaps a 2nd opinion and ask some of the points I have brought up. I do believe there is a lot of data on long term usage of this very powerful drug.

    Best to you,

    Doris

    To Sir with love....
    You have expressed your thoughts about my bones before. My bones are fine. My team of docs monitor me very carefully. The studies I am talking about are those specifically looking at post 5 year and he said, at my 5 year point, there wasn't any specific determination yet.
    I understand its potency. I have to take more than one drug that is a two-sided sword, I am not naive, and have that conversation with my onc at least once a year weighing all sides. I am still on it and willing to deal feeling, at least, that I am doing SOMETHING to prevent a recurrence.
  • Phoenix chick
    Phoenix chick Member Posts: 13
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    SIROD said:

    For Tufi000 Please Check Again!!
    Dear Tufi000,

    Arimidex came out in the late 1990's one of the first aromatase inhibitors. I began treatment in 1999. Femara and Aromasin came later. There should be at least 10 years or more of data on Arimidex.

    Back in 2000, I remember an article I read about AI's. The doctor in the article stated that he "would love to see the bones of women ten years on this drug". Bones deprived of estrogen for a long time do have serious side effects. To say nothing about vaginal atrophy and the rest of the parts that need estrogen.

    Though Aromatase Inhibitors looks like a fairly benign drug, it isn't. It is a very potent drug. There is also the possibilities that the drug could turn against you. Instead of the protection you expect against cancer, it could become the problem.

    I suggest that you speak with your oncologist and perhaps a 2nd opinion and ask some of the points I have brought up. I do believe there is a lot of data on long term usage of this very powerful drug.

    Best to you,

    Doris

    Arimidex side effects
    I am struggling with joint pain... has got progressively worse in the 9 months... (not that I am counting down to 5 years LOL). Hands are the worst, especially at night if a unconsciously do something like straighten my pillow in my sleep OUCH!. Better during the day except for prolonged periods of using the mouse on the computer, driving, prolonged gripping the dog brush etc. Getting moving in the morning is very painful... literally everywhere, but this only last a minute or or so. I am fine once I am dressed. My legs stiffen up especially my knees if I sit for more than 30 minutes.
    My hands have been feeling a bit puffy lately. Not sure whether to blame the summer heat ( as I'm from Oz) or the drug.
    Strategies so far: Swimming 30 mins 3-4 times per week. 45 mins walking on other day. Glucosamine, Chondroitin, fish oil, calicum supplements everyday. Takes a while to kick in, but worth it. I stretch LOTS during the day. Keep a low BMI to keep the joints unloaded.
    Is there any other real evidence out there to keep the joint pain under control apart for Panadol etc.?
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
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    No, I took it too. I
    No, I took it too. I switched after a few years to faslodex. Some new trials are beginning to suggest that arimidex + faslodex = improved survival. See:

    Faslodex Adds Punch to Armidex for Breast Cancer

    http://www.oncologyreport.com/news/clinical/single-article/fulvestrant-adds-punch-to-anastrozole-for-hr-breast-cancer/78e7e3bf2d.html

    I see my oncologist Monday and will ask him what he thinks. My markers are still quite high, but not much worse than they have been.
  • cabbott
    cabbott Member Posts: 1,039 Member
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    Arimidex side effects
    I am struggling with joint pain... has got progressively worse in the 9 months... (not that I am counting down to 5 years LOL). Hands are the worst, especially at night if a unconsciously do something like straighten my pillow in my sleep OUCH!. Better during the day except for prolonged periods of using the mouse on the computer, driving, prolonged gripping the dog brush etc. Getting moving in the morning is very painful... literally everywhere, but this only last a minute or or so. I am fine once I am dressed. My legs stiffen up especially my knees if I sit for more than 30 minutes.
    My hands have been feeling a bit puffy lately. Not sure whether to blame the summer heat ( as I'm from Oz) or the drug.
    Strategies so far: Swimming 30 mins 3-4 times per week. 45 mins walking on other day. Glucosamine, Chondroitin, fish oil, calicum supplements everyday. Takes a while to kick in, but worth it. I stretch LOTS during the day. Keep a low BMI to keep the joints unloaded.
    Is there any other real evidence out there to keep the joint pain under control apart for Panadol etc.?

    Where's the D3
    I don't see that you are taking Vitamin D3. Please consider getting tested for deficiency(very common among breast cancer patients and associated with inflamation-both joints and cancer). For me it worked better than Ibruprofin which I used to buy in the economy package. Now I don't take any pain meds unless I forget my morning cup of coffee. . .
  • janie560
    janie560 Member Posts: 42
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    SIROD said:

    For Tufi000 Please Check Again!!
    Dear Tufi000,

    Arimidex came out in the late 1990's one of the first aromatase inhibitors. I began treatment in 1999. Femara and Aromasin came later. There should be at least 10 years or more of data on Arimidex.

    Back in 2000, I remember an article I read about AI's. The doctor in the article stated that he "would love to see the bones of women ten years on this drug". Bones deprived of estrogen for a long time do have serious side effects. To say nothing about vaginal atrophy and the rest of the parts that need estrogen.

    Though Aromatase Inhibitors looks like a fairly benign drug, it isn't. It is a very potent drug. There is also the possibilities that the drug could turn against you. Instead of the protection you expect against cancer, it could become the problem.

    I suggest that you speak with your oncologist and perhaps a 2nd opinion and ask some of the points I have brought up. I do believe there is a lot of data on long term usage of this very powerful drug.

    Best to you,

    Doris

    Did u not take arimadex
    It appears by your comment u did not take inhibators? Have u had any reoccurances? I have not taken any against my doctors advice and I am trying alternatives but very scared of a reoccurance.
  • janie560
    janie560 Member Posts: 42
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    SIROD said:

    For Tufi000 Please Check Again!!
    Dear Tufi000,

    Arimidex came out in the late 1990's one of the first aromatase inhibitors. I began treatment in 1999. Femara and Aromasin came later. There should be at least 10 years or more of data on Arimidex.

    Back in 2000, I remember an article I read about AI's. The doctor in the article stated that he "would love to see the bones of women ten years on this drug". Bones deprived of estrogen for a long time do have serious side effects. To say nothing about vaginal atrophy and the rest of the parts that need estrogen.

    Though Aromatase Inhibitors looks like a fairly benign drug, it isn't. It is a very potent drug. There is also the possibilities that the drug could turn against you. Instead of the protection you expect against cancer, it could become the problem.

    I suggest that you speak with your oncologist and perhaps a 2nd opinion and ask some of the points I have brought up. I do believe there is a lot of data on long term usage of this very powerful drug.

    Best to you,

    Doris

    Sirod?
    Sirod. It appears by your comment u did not take inhibator, have u had a reoccourance?
  • chenheart
    chenheart Member Posts: 5,159
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    I am estrogen positive, I
    I am estrogen positive, I took the Arimidex for the entire 5 years, and 2 years later I did indeed get a recurrance. So, to me, it seems the Arimidex did indeed keep the Beast at bay~ I am 3/4 through chemo , and am part of a very successful clinical trial. I didn't have too many side effects at all with the Arimidex, but even if I had, my personality is such that I would have taken it anyway! I am doing everything within reason to kill this Beast!
  • BetsyJane
    BetsyJane Member Posts: 127
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    I was petrified to take this drug
    I did eventually give in. I started taking it and I too got severe aching bones and found it hard to get up after sitting for a half hour or so.

    I started taking lots of vitamins, i.e. triple doses of Vitamin D, extra Calcium (Caltrate), Evening primrose, Fish Oil, Glucosamine Chrondriton WITH MSM, Vitamin C, Biotin, Lutein, Zinc, B-Complex and Resvintrol Liquid..I feel all these extra vitamins helped immensely to curb the side effects. I no longer have severe aching bones and it is much easier to get up after sitting.

    I also switched and started taking Arimidex at bedtime. This also helped to curb the side effects. I am sleeping thru them.

    I've only been taking Arimidex for three months, but so far, side effects are very manageable.

    If I were you, I'd at least give them a try. Good luck and God Bless.

    Betsy
  • missrenee
    missrenee Member Posts: 2,136 Member
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    BetsyJane said:

    I was petrified to take this drug
    I did eventually give in. I started taking it and I too got severe aching bones and found it hard to get up after sitting for a half hour or so.

    I started taking lots of vitamins, i.e. triple doses of Vitamin D, extra Calcium (Caltrate), Evening primrose, Fish Oil, Glucosamine Chrondriton WITH MSM, Vitamin C, Biotin, Lutein, Zinc, B-Complex and Resvintrol Liquid..I feel all these extra vitamins helped immensely to curb the side effects. I no longer have severe aching bones and it is much easier to get up after sitting.

    I also switched and started taking Arimidex at bedtime. This also helped to curb the side effects. I am sleeping thru them.

    I've only been taking Arimidex for three months, but so far, side effects are very manageable.

    If I were you, I'd at least give them a try. Good luck and God Bless.

    Betsy

    I started Arimidex 1 1/2 years ago
    after being diagnosed with Stage 3C IDC with 10 positive lymph nodes and undergoing surgery, chemo (6 rounds of TAC) and 33 rads. My cancer was very highly estrogen and progesterone positive. Just a couple of weeks ago, I was diagnosed with metastasis in my spine and pelvis. So, I'm not really sure if the Arimidex made a bit of difference. I took it because my med. onc. strongly urged me to and since I am not an oncologist, I felt she knew way better than me about treatment recommendation.

    In Hester Hill Schnipper's book "After Breast Cancer" she says "To some extent, surviving breast cancer seems to be a crapshoot." I believe that too. You can do everything that's recommended, completely change your diet and lifestyle and still get a recurrence or metastasis. The main thing is, after getting as much "real" information as possible (not most of the crap we read on the internet), trusting in our healthcare team and following their expert advice, we have to be at peace with whatever decisions we make.

    By the way, the above-referenced book is an excellent resource, in my humble opinion.

    Hugs, Renee
  • SIROD
    SIROD Member Posts: 2,194 Member
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    janie560 said:

    Sirod?
    Sirod. It appears by your comment u did not take inhibator, have u had a reoccourance?

    To Janie560 about Aromatase Inhibitors
    Hi Janie,

    I had 3 recurrences, '99, '00, '08. The worst was in '08 with widespread pulmonary & pleural metastasis. The thoracic surgeon who did my VATS (video assisted thoracic surgery) stated my lungs and lining were studded with tumors. I had already done Tamoxifen & Arimidex so I chose Faslodex. Progressed and went on to Femara. I was never NED, as some tumors stayed around. I was considered stable. Last spring the tumors progressed. I asked for a drug break and it was given. My first 3 months ct scan showed only one tumor growing (I think of that one as the leader of the pack). It found the estrogen.

    I did not take a drug called Estradiol which is often given to women who progressed on Aromatase Inhibitors. Tooted very highly in the San Antonio Breast Cancer Symposium of 2008. Some women have success with it and others don't. The theory is to feed estrogen to the tumors, let them think it's party time. Then start up an aromatase inhibitors. The tumors are so upset, they die.

    When my scan showed little progression, I asked for 4 more months off AI's. Two and half months in, I knew it was back, shortness of breath, dry cough, loosing my voice. I waited another 1 1/2 months to have a ct scan. I can do this, my cancer is slow growing. The tumors came back including ribs and I began Femara again. I will know at the end of March if the drug is working. One woman did the same and gain 6 extra months on Femara.

    What this does is buy more time on hormonal therapy.

    You didn't ask for a history on hormonal did you? :)

    However, it does no harm to know how they work and the possibilities that they offer. When I began the journey, there was only Tamoxifen, when I recurred there was Arimidex. My last ditch with them will be Aromasin with Afinitor, a new combo which offers great success. One woman took them and had 26 months on them (Bolero Trial) before progression. That is wonderful.

    Aromatase Inhibitors have serious side effects but, for me they are a miracle drug.

    Go for it Janie, buy the best insurance against a recurrence that you can. Don't be afraid of it.

    Best to you,

    Doris
  • cahjah75
    cahjah75 Member Posts: 2,631
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    I've been on Arimidex
    for one year now. I already had osteoarthritis and spinal stenosis so the added joint pain is not pleasant. I find it much harder to lose weight too. My latest blood work showed my cholesterol went up by more than 60 pts! But, I'm the 5th in my family with bc and I was ER+ and PR+. I had bilateral mastectomy, 6 rounds of T/C chemo and 28 rads. I don't want a recurrence but if it happens I'll do whatever it takes to get through it. Of my 2 sisters with bc, one took Arimidex for 5 years and is fine; the other took Tamoxifen and had a recurrence 9 years later. So, you never know.
    {{hugs}} Char
  • lynn1950
    lynn1950 Member Posts: 2,570
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    I've been on Arimidex for
    I've been on Arimidex for 3.5 years. Despite the nasty SEs, I'm not willing to risk going without. I want to know that I've done everything I can to fight the beast. xoxoxo Lynn
  • bubbe.iris
    bubbe.iris Member Posts: 1
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    BetsyJane said:

    I was petrified to take this drug
    I did eventually give in. I started taking it and I too got severe aching bones and found it hard to get up after sitting for a half hour or so.

    I started taking lots of vitamins, i.e. triple doses of Vitamin D, extra Calcium (Caltrate), Evening primrose, Fish Oil, Glucosamine Chrondriton WITH MSM, Vitamin C, Biotin, Lutein, Zinc, B-Complex and Resvintrol Liquid..I feel all these extra vitamins helped immensely to curb the side effects. I no longer have severe aching bones and it is much easier to get up after sitting.

    I also switched and started taking Arimidex at bedtime. This also helped to curb the side effects. I am sleeping thru them.

    I've only been taking Arimidex for three months, but so far, side effects are very manageable.

    If I were you, I'd at least give them a try. Good luck and God Bless.

    Betsy

    taking Arimidex at bedtime

    BetsyJane,

    THANK YOU for posting that you switched taking your Arimidex to bedtime!

    I have been having several side effects...initially, I had no side effects, but now, 2.5 yrs later, I was having joint pain and nausea.  I started reading these posts and you were the one I saw mentioning taking the drug at night.  WONDERFUL!  I too sleep through the worst of the effects.  I would say that they have improved well over 50%!  What a difference!

    Again, thank you!

    Iris