ARIMIDEX QUESTIONS....

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Thankful to God
Thankful to God Member Posts: 5
edited March 2014 in Breast Cancer #1
Checking in with Breast Cancer Survivors and our next step in better understanding the side effects of Arimidex. (Level 1, lumpectomy/clear in three lymph nodes,& radiation.) On Arimidex now for 4 weeks with so many side effects. As the "promise" drug, Arimidex is suppose to keep us safe from reoccurrence of this horrific cancer. I have researched Arimidex for answers, but also care about Cancer Survivor’s thoughts about our quality of life with Arimidex over the next 5 years and also wondering if any one has experienced any reoccurrence of this horrific cancer disease while taking Arimidex?

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  • roseann4
    roseann4 Member Posts: 992 Member
    #2
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    I've been on for 2 years with no recurrence.
    I am one of the fortunate ones who has very few side effects. My diagnosis and treatment was similar to yours. I take it at night before bed. My hands are sometimes a little stiff but that"s all. I have a friend who has been on for 6 years with no recurrance.

    Roseann
  • Lighthouse_7
    Lighthouse_7 Member Posts: 1,566 Member
    #3
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    roseann4 said:

    I've been on for 2 years with no recurrence.
    I am one of the fortunate ones who has very few side effects. My diagnosis and treatment was similar to yours. I take it at night before bed. My hands are sometimes a little stiff but that"s all. I have a friend who has been on for 6 years with no recurrance.

    Roseann

    I couldn't take it either.
    I couldn't take it either. Just too many side effects. Since you asked and I assume really want to know, I met a woman at the Water Fire Breast Cancer night back in October in Providence, RI.
    She just had a recurrance from 5 years original diagnosis. I asked if if she would mind me asking her a question, and she said, anything!
    My question was if she had taken a 5 year pill and her answer was, yes, Arimidex.
    These drugs are very important in the fight for survival but they are not foolproof. Just because you asked.
    Good luck and God Bless,
    Hugs,
    Wanda
  • cabbott
    cabbott Member Posts: 1,039 Member
    #4
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    Safe is relative
    When Tamoxifen came out years ago, the doctors were estatic because they could prove statistically that a woman with breast cancer that took Tamoxifen had 50% less chance of reoccurance. That means that if without Tamoxifen you have a 10% chance of reoccurance, with Tamoxifen your chance of reoccurance drops to 5%. If you have a 50% chance of reoccurance without Tamoxifen, then with Tamoxifen you have only 25% chance of reoccurance. The aromatase inhibitors, including Arimidex, are twice as effective as Tamoxifen, but can't be used on women who have functioning ovaries. That means that if without anything they have a 10% chance of reoccurance, on Arimidex, they only have a 2.5% chance of reoccurance. Or if they had a 50% chance of reoccurance without any treatment, on Arimidex they will have only a 12.5 % chance of reoccurance. I put two examples so you would see that the good effects of the drug depend on how aggressive the cancers are.

    If the math boggles your brain, just know that while it is tons better than nothing, the risk never drops to zero. We do what we can, but it is still short of a cure. Is the drug worth it? You will have to make your own decision about that. The more aggressive your cancer is the more you need help. I took both Tamoxifen for 3 years and aromasin for 5 years. Next week will be my last week. I found I got sore toe joints if my vitamin D3 level dropped too low on the aromasin, but it was never bad enough for me to quit the drug. When I found that taking the vitamin D3 stopped the pain entirely, I had even less problems taking the drug. I figured that even though it was short of a cure, I had to do everything I could to ensure my health for as long as I could. Other folks in my shoes may have decided differently. I'm sure you will make the right choice for you.
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #5
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    I was diagnosed with breast
    I was diagnosed with breast cancer in 1987--had chemo, radiation, mastectomy and years of tamoxifen. I then had a lovely 22 year remission. In 2009, I was diagnosed with bone mets and put on arimidex and zometa. The arimidex is working and my markers are normal are near normal and my bones are no longer hurting. I will be taking the arimidex as long as I live or until it quits working.

    My only advice is to take arimidex in the evening as taking it in the am made me tired. Also, have your onc or your primary check your vitamin D level as soon as possible. A low vitamin d level may make you feel worst on the drug. Do not bother to try and just add more vitamin d to your diet--you really need to check your level. I had been taking 2000 IU and thought that was plenty--wrong! I now see an endocrinologist who really upped my vit d and I finally have a normal level.

    And I am doing fine on the arimidex--it beats the heck out of cancer!

    Vitamin D Reduces Aromatase Inhibitor Pain
  • aisling8
    aisling8 Member Posts: 1,627 Member
    #6
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    CypressCynthia said:

    I was diagnosed with breast
    I was diagnosed with breast cancer in 1987--had chemo, radiation, mastectomy and years of tamoxifen. I then had a lovely 22 year remission. In 2009, I was diagnosed with bone mets and put on arimidex and zometa. The arimidex is working and my markers are normal are near normal and my bones are no longer hurting. I will be taking the arimidex as long as I live or until it quits working.

    My only advice is to take arimidex in the evening as taking it in the am made me tired. Also, have your onc or your primary check your vitamin D level as soon as possible. A low vitamin d level may make you feel worst on the drug. Do not bother to try and just add more vitamin d to your diet--you really need to check your level. I had been taking 2000 IU and thought that was plenty--wrong! I now see an endocrinologist who really upped my vit d and I finally have a normal level.

    And I am doing fine on the arimidex--it beats the heck out of cancer!

    Vitamin D Reduces Aromatase Inhibitor Pain

    Question
    So I began Arimidex end of May, had no problems. Now it's generic and my joints ache, bottoms of my feet hurt, and I'm cranky. Can there really be a difference between the real deal and generic? And does it matter that it's manufactured in India?

    Victoria
  • Different Ballgame
    Different Ballgame Member Posts: 868
    #7
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    aisling8 said:

    Question
    So I began Arimidex end of May, had no problems. Now it's generic and my joints ache, bottoms of my feet hurt, and I'm cranky. Can there really be a difference between the real deal and generic? And does it matter that it's manufactured in India?

    Victoria

    Victoria
    Dear Victoria,

    I started Arimidex on March 19, 2010 with no problems other than mild hot flashes. Then in October 2010, I developed numbness/tingling in both my hands. I swore it was caused by Arimidex. I was wrong. My doctor took me off the drug for 2 months. Tingling/numbness did not disappear but did lessen. What also happened to me in October was that I developed a rash on my torso, both front and back. Dermatologist said that the rash was a reaction to medication. I was on 3 medications: Synthroid since I was 33, water pill since January 2007, and Arimidex since March 2010. Dermatologist thought it was the water pill.

    Bottom line. I never went off the water pill while I took medication for the rash but I did go off Armidex. Rash was gone after 1 month and I stayed clear for 1 more month.

    After 2 months of being off Armidex, I am now back on it but am now taking the generic made in India. Too soon to tell you how I am doing. So far, so good. If anything develops, I will post it.

    Hugs,
    Janelle
  • Different Ballgame
    Different Ballgame Member Posts: 868
    #8
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    Thankful to God
    Dear Thankful to God,

    How lucky do you feel? I did not want to go on Arimidex because I feared the side effects. I made my decision on the day that I met with my oncologist (hematology). I decided to go on it as I knew that I could always stop being on it. Please read what I said to Victoria as far as the reaction to Arimidex.

    What I have learned from my breast support groups is: There are women who do great on Arimidex but not great on the other drugs. Then there are women who do great on the other drugs, but not great on Arimdex. It cannot be explained. We are all different.

    So...if you end up having bad side effects on Arimidex, discuss with your doctor and then change to a different drug which hopefully will be much better for you.

    From reading postings on this board, there are a number of women who have been very lucky with Arimidex and have not had side effects. Then there are other women who have had bad side effects while taking Arimidex. You won't know which woman you are until you take the drug.

    Lots of Hugs,
    Janelle
  • Thankful to God
    Thankful to God Member Posts: 5
    #9
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    roseann4 said:

    I've been on for 2 years with no recurrence.
    I am one of the fortunate ones who has very few side effects. My diagnosis and treatment was similar to yours. I take it at night before bed. My hands are sometimes a little stiff but that"s all. I have a friend who has been on for 6 years with no recurrance.

    Roseann

    Armidex Questions...
    Roseann,

    Thank you for your follow up, as this is all very new to me. I have always had such a high energy level,and lot's of responsibility as a caregiver to others, with little time to take care of myself. Like all of us, this cancer caught me off guard.

    I appreciate your honesty Roseann about Arimidex, and you, and your friend are very fortunate with no recurrance. My goal is to never hear the word "cancer" again in my lifetime. I guess my concern is always having confidence in health care providers, and the statistics that they provide to breast cancer patients with percentages of no recurrance. Maybe I have not been on Arimidex long enough for my body to get use to the stripping away of what is left of my estrogen, but this tiny little pill seems so intense compared to nature's way with.... gradual menopause.

    It must also be important to balance exercise and keeping healthy with nutritional fruits, vegetables, vitamins etc. Have either of you noticed any weight gain along with the years on Arimidex?

    Take care,

    Barb
  • Thankful to God
    Thankful to God Member Posts: 5
    #10
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    Lighthouse_7 said:

    I couldn't take it either.
    I couldn't take it either. Just too many side effects. Since you asked and I assume really want to know, I met a woman at the Water Fire Breast Cancer night back in October in Providence, RI.
    She just had a recurrance from 5 years original diagnosis. I asked if if she would mind me asking her a question, and she said, anything!
    My question was if she had taken a 5 year pill and her answer was, yes, Arimidex.
    These drugs are very important in the fight for survival but they are not foolproof. Just because you asked.
    Good luck and God Bless,
    Hugs,
    Wanda

    Arimidex Questions...
    Wanda,

    Many thanks for your follow up and your honesty. That is exactly the answer to the question that I wanted to know about learning that she had......"taken a 5 year pill and her answer was, yes." So much to learn and we are all now "Sisters" as Breast Cancer Survivors. From the first diagnosis of cancer, and throughout all the months of treatments, it is so helpful to share our experiences, and even have a friend to cry with...sometimes.

    How long did you take Arimidex Wanda? It would be extremely helpful to know the statistics of the breast cancer patients that continued to take the pill for five years that resulted in reoccurrence and/or no reoccurrence, compared to the breast cancer patients that opted not to continue taking Arimidex with reoccurrence and/or no reoccurrence. I may ask my oncologist doctor for those statistics, if they are available.

    Take care and God Bless,

    Barb
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #11
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    Different Ballgame said:

    Thankful to God
    Dear Thankful to God,

    How lucky do you feel? I did not want to go on Arimidex because I feared the side effects. I made my decision on the day that I met with my oncologist (hematology). I decided to go on it as I knew that I could always stop being on it. Please read what I said to Victoria as far as the reaction to Arimidex.

    What I have learned from my breast support groups is: There are women who do great on Arimidex but not great on the other drugs. Then there are women who do great on the other drugs, but not great on Arimdex. It cannot be explained. We are all different.

    So...if you end up having bad side effects on Arimidex, discuss with your doctor and then change to a different drug which hopefully will be much better for you.

    From reading postings on this board, there are a number of women who have been very lucky with Arimidex and have not had side effects. Then there are other women who have had bad side effects while taking Arimidex. You won't know which woman you are until you take the drug.

    Lots of Hugs,
    Janelle

    Just started
    I just started Arimidex 6 weeks ago. So far, so good. I figured I could stop if I didn't tolerate it, but wouldn't know unless I started it. I didn't want to do chemo, either, but I did. Anything that will or may keep this sucker from coming back. Nothing is 100%. There are always exceptions. These are the tools that have reduced the recurrences and deaths from breast cancer. I know there is no cure but I also know that the statistics have changed (greatly improved) since Tamoxifen and now the aromatase inhibitors. I actually feel fortunate to be estrogen-receptor positive and have this drug to take.

    Cypress Cynthia, I hadn't heard about the Vitamin D effect. My onc said to take glucosamine and walk if I had problems. Didn't say a thing about Vitamin D, but then we just got my levels up in the normal range and I continue to take 2000 IU daily.

    Suzanne
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    #12
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    CypressCynthia said:

    I was diagnosed with breast
    I was diagnosed with breast cancer in 1987--had chemo, radiation, mastectomy and years of tamoxifen. I then had a lovely 22 year remission. In 2009, I was diagnosed with bone mets and put on arimidex and zometa. The arimidex is working and my markers are normal are near normal and my bones are no longer hurting. I will be taking the arimidex as long as I live or until it quits working.

    My only advice is to take arimidex in the evening as taking it in the am made me tired. Also, have your onc or your primary check your vitamin D level as soon as possible. A low vitamin d level may make you feel worst on the drug. Do not bother to try and just add more vitamin d to your diet--you really need to check your level. I had been taking 2000 IU and thought that was plenty--wrong! I now see an endocrinologist who really upped my vit d and I finally have a normal level.

    And I am doing fine on the arimidex--it beats the heck out of cancer!

    Vitamin D Reduces Aromatase Inhibitor Pain

    Thanks for the link Cynthia.

    Thanks for the link Cynthia.
  • jthm190
    jthm190 Member Posts: 5
    #13
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    aisling8 said:

    Question
    So I began Arimidex end of May, had no problems. Now it's generic and my joints ache, bottoms of my feet hurt, and I'm cranky. Can there really be a difference between the real deal and generic? And does it matter that it's manufactured in India?

    Victoria

    generic

    I would  find out if the pharamcy is getting the Arimidex form a thrid world country - and if so i woudl request a USA company which is in NC.

  • jenny57
    jenny57 Member Posts: 6
    #14
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    roseann4 said:

    I've been on for 2 years with no recurrence.
    I am one of the fortunate ones who has very few side effects. My diagnosis and treatment was similar to yours. I take it at night before bed. My hands are sometimes a little stiff but that"s all. I have a friend who has been on for 6 years with no recurrance.

    Roseann

    the anthi hormmone pills and what they caused me

    When I was told from my chemo doctor to start taking the anthi hormom pills I said o.k at first.

    Than soon as I started to take them. They gave me sever bone and joint pain and really bad nausa. And that was taking

    Ameridex. When I tried taking Tomoxifen the other anthi hormone pills! That gave me a stroke like symptom. And I ended up in the ER because of the sever reaction it gave me! So after that! I told my doctor that I am done taking these pills and I want to live my life. With the quality of life for me without pills and the pain it cause's me.

    And thank god he rescepts me for that!  I am in remission this month I found out from my chemo doctor.

    And I have been doing cannabis for the pain that I have and got from taking these pills too!

    And thank god too!

    I was diagnosed with late stage type 3 breast cancer in 2011

    your breast cancer friend Jenny Kilpatrick. p.s the doctor told me that I have a 50 percent chance of getting my cancer back. But I am still kicking cancers butt. by staying positive it a good way and with positive good faith in god too!

     

  • jenny57
    jenny57 Member Posts: 6
    #15
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    Lighthouse_7 said:

    I couldn't take it either.
    I couldn't take it either. Just too many side effects. Since you asked and I assume really want to know, I met a woman at the Water Fire Breast Cancer night back in October in Providence, RI.
    She just had a recurrance from 5 years original diagnosis. I asked if if she would mind me asking her a question, and she said, anything!
    My question was if she had taken a 5 year pill and her answer was, yes, Arimidex.
    These drugs are very important in the fight for survival but they are not foolproof. Just because you asked.
    Good luck and God Bless,
    Hugs,
    Wanda

    Is it true that cancer can come back after remission?

    I am wondering if it is true that cancer can come back after remission!

  • jthm190
    jthm190 Member Posts: 5
    #16
    Options
    Arimidex

    my side effects are nausea and tiredness - so when i am tired i lie down and watch Barefoot Contessa. yes, my stuff at home is not getting done and that makes me crazy. My grandchildren are coming to visit and i want more energy for them and for me. 

     

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