Arimidex

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mschaben
mschaben Member Posts: 87
in Breast Cancer #1

I was on tomixifen until November and had full hysterectomy. I was then put on arimidex .  Hadnt had much for bone pain since start of arimidex.  But last couple months I have had bad leg bone pain and hip pain. Almost debilitating to walk after sitting or sleeping. Once I'm up its not as bad as when I'm resting.  So dr wants to do a trial and take me off for six weeks then see if we go back on or try a different one.  Can anyone relate ? 

Thank You 

Mary 

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Comments

  • tufi000
    tufi000 Member Posts: 745 Member
    edited July 2016 #2
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    Took a while

    It gradually subsided over a couple years. Been on it now for 13 yrs and no noticeable side affects but the docs watched my bones because of it.  It's a bone leach and I have been fine with it all and grateful.

    But everyone reacts differently.  I have been fine

  • Teach76
    Teach76 Member Posts: 351 Member
    edited July 2016 #3
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    Bone scan before Armidex?

    I am scheduled to begin taking Armidex as soon as my radiation is done.  I have never had a bone scan.  When I saw my MO and he told me about the Armidex I asked if I should have a baseline scan done.  He did not seem to think it was necessary.  I am wondering if others had a scan prior to beginning their hormone therapy.  I don't want to sound pushy, but in my experience, doctors constantly ask, " What did your last ---- show?" then they are surprised to hear I never had one.  Thanks for sharing your experience!

    Kathy

  • tufi000
    tufi000 Member Posts: 745 Member
    #4
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    I didn't either

    It's a very slow process and doc may figure what is now will be when they decide to do one. It's been every 2 yrs for me

  • Puffin2014
    Puffin2014 Member Posts: 531 Member
    #5
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    bone density test, not bone scan

    Technically a bone scan is not the same test as a bone density test, or Dexascan. Yes, you definitely need a Dexascan as a baseline for your bone density before starting Arimidex, and then it's repeated every 2 years. I had my 2 year followup this week and find out the results later this week when I see my MO.

  • Teach76
    Teach76 Member Posts: 351 Member
    #6
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    Puffin2014 said:

    bone density test, not bone scan

    Technically a bone scan is not the same test as a bone density test, or Dexascan. Yes, you definitely need a Dexascan as a baseline for your bone density before starting Arimidex, and then it's repeated every 2 years. I had my 2 year followup this week and find out the results later this week when I see my MO.

    Thank you!

    Thank you for clarifying the tests for me.  I expect to see the MO after radiation ends, so I can bring that up to him again.  Ypu are a wonderful resource for us here!

    Kathy

  • tufi000
    tufi000 Member Posts: 745 Member
    edited July 2016 #7
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    Scans

    Since they had done a bone scan while in treatment mode they had a baseline followed by density scans every 2 yrs and bone scan if they wanted to check something as I have a weird hip area thing that has so far proved meaningless thank goodness.  Everyone is different but do not be reluctant to ask docs stuff

  • pamcb3
    pamcb3 Member Posts: 44
    edited July 2016 #8
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    Arimidex

    Hi, I can empathize! I couldn't tolerate any of the meds orally. I was told of a new clinical trial using Arimidex ( aromatase inhibitors) with testosterone in a pellet form. My oncologist approved of it. It isn't perfect but it helps me tolerate the meds. The pellets are injected into my hip every three months. My oncology surgeon puts them in. Takes ten minutes tops just an office visit. I made 2 trips to the millennium wellness clinic in Ohio. I saw a Dr. Rebecca Glaser. If it weren't for these pellets I would have chosen not to take any meds..... Good luck to you!!

  • gracegotmehere
    gracegotmehere Member Posts: 19
    #9
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    i tried arimidex

    for four months.  The bone pain became excruciating.  During that time I took a break from it, then started up again, of course same reaction.  MO switched me to aromasin (exemestane) which I did for 3 months before I was miserable again.  I would have wracking pain in shin bones, hips, while trying to do my job.  Finally I switched to tamoxifen.  Tamoxifen actually strengthens your bones, does not thin them like aromatase inhibitors like arimidex and aromasin.  I know about the ATAC study, but the numbers just don't justify the kind of misery I was in and the damage I was doing to my bones.  Best to you in your treatment!

  • gracegotmehere
    gracegotmehere Member Posts: 19
    #10
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    Teach76 said:

    Bone scan before Armidex?

    I am scheduled to begin taking Armidex as soon as my radiation is done.  I have never had a bone scan.  When I saw my MO and he told me about the Armidex I asked if I should have a baseline scan done.  He did not seem to think it was necessary.  I am wondering if others had a scan prior to beginning their hormone therapy.  I don't want to sound pushy, but in my experience, doctors constantly ask, " What did your last ---- show?" then they are surprised to hear I never had one.  Thanks for sharing your experience!

    Kathy

    I don't think a bone scan is

    I don't think a bone scan is what you want.  I think what you want is a bone density test.  I've had both of those.  The density test is easy and quick.  I would urge you to do it-- my doctor ordered it for me so we would be able to see what the effect of that bone-thinning class of drugs, aromatase inhibitors, was on my bones.

  • Stephaniejm
    Stephaniejm Member Posts: 1
    #11
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    Aromatise inhibitors

    Hello, I am approx. 3.5 years from ending my surgery, chemo and radiation.  Have been on several AH, all with really bad leg pain, feeling crumby in the AM when I get up.  Have friend that quit after the first month.  I stopped taking the end of January, oncologist wanted me to try again, after one month I was right back with the leg pain and feeling terrible.  Stopped a month ago, seeing onc. tomorrow.  I have tried letrozole, exemestane, anastrozole I don't see a lot of difference.  Besides the pain I have hair loss, thin fingernails.....  I have read the AH give about a 50% chance of cancer not returning.  I don't feel I can stop for that reason.  Someone mentioned taking Claritol, the decongestant, that is suppose to help with side effects, has anyone here tried that??  I am in my early 70s, also deal with cronic back pain.....some days I feel I can't handle both.   

  • bernih
    bernih Member Posts: 2
    #12
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    Teach76 said:

    Bone scan before Armidex?

    I am scheduled to begin taking Armidex as soon as my radiation is done.  I have never had a bone scan.  When I saw my MO and he told me about the Armidex I asked if I should have a baseline scan done.  He did not seem to think it was necessary.  I am wondering if others had a scan prior to beginning their hormone therapy.  I don't want to sound pushy, but in my experience, doctors constantly ask, " What did your last ---- show?" then they are surprised to hear I never had one.  Thanks for sharing your experience!

    Kathy

    I had a bone density scan

    I had a bone density scan before I started Armidex in April.  My Dr plans for me to have more scans to check my bone density as I continue to take this.

  • Teach76
    Teach76 Member Posts: 351 Member
    edited August 2016 #13
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    Following post

    I don't have an opinion at this point - I just began Armidex last week.  So far I find some upset stomach, but onco wants me to try for 6 weeks.  I am still recovering from radiation, so I can't yet separate those SE from the  armidex SE.  I will be following this thread and will comment as I continue.  Thanks!

    Kathy

  • nerak827
    nerak827 Member Posts: 2
    #14
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    I had surgery on both breasts  lumpectomy...rt breast has stage 1 nothing in lympnodes or margins...left breast had a cyst and when surgeon took it there was a baby cancer behind the cyst that didn't show on any of the tests...he also too k that no lymphnodes and clear margins...  rt breast stage 1 left breast stage 0.  I am going to have radiation treatments and the onocologist told me i would be on armedex for 5 yrs...I have been researching this drug and I think I am going to refuse it.  I have read alot of information on all the side effects which to me isn't side effects at all it's the way you are going to live in pain.....etc.....I think i would rather eat right....and ofcourse be watched closely and have quality of life rather than quantity.......   any opinions on this would be help......Please someone help about this drug...

     

  • nerak827
    nerak827 Member Posts: 2
    #15
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    Teach76 said:

    Following post

    I don't have an opinion at this point - I just began Armidex last week.  So far I find some upset stomach, but onco wants me to try for 6 weeks.  I am still recovering from radiation, so I can't yet separate those SE from the  armidex SE.  I will be following this thread and will comment as I continue.  Thanks!

    Kathy

    thank you Kathy...I am just in a state to say I don't know what to do... i realize everyone is different but so far my research has shown about the same side effects for everyone and well truthfully they scare me...

     

  • Iris_G
    Iris_G Member Posts: 50 Member
    #16
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    Bone pain

    I'm curious...I'll be starting Arimidex in October after all my Herceptin treatments are finished.  When I was doing chemo, I was given Neulasta and one of the SEs was bone pain.  My oncologist told me to take Claritin as it helped with the bone pain, which it really did work great.  Wonder if it would work with Arimidex?  I'll have to ask him that question at my next treatment.

  • Keroom76
    Keroom76 Member Posts: 2
    #17
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    Yaah

    I got recently diagnosed with breast cancer also. Post chemotherapy my periods stopped. I have not had it back for about 10months or so now. Consequently, I was put on arimidex. It took some time to get bone pain, you know, as this drugs concentrates and starts to exert its effects on the body . Anyhow, try tylenol /non steroidal antiinflammatory (such as motrin) ensure you have had a snack also. Vit D/Calcium/Magnesium supplements is essential and also a daily exercise, you need to do some weight bearing exercises, and eat well, include dairy products. This drug will slowly thin your bones and you want to build your bone on a daily basis. You' ll notice you will also have joint aches and generalized body aches. Ensure you eat fish, include omega supplements in your diet! Day one, very important to walk and exercise. I am not saying run marathons, i mean a sensible daily exercise can not be underestimated! Coming from a medical background and also being recently diagnosed with this disease and also because i take this drug on a daily basis i can relate. Thanks guys, God BLESS!

  • Keroom76
    Keroom76 Member Posts: 2
    #18
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    nerak827 said:

    I had surgery on both breasts  lumpectomy...rt breast has stage 1 nothing in lympnodes or margins...left breast had a cyst and when surgeon took it there was a baby cancer behind the cyst that didn't show on any of the tests...he also too k that no lymphnodes and clear margins...  rt breast stage 1 left breast stage 0.  I am going to have radiation treatments and the onocologist told me i would be on armedex for 5 yrs...I have been researching this drug and I think I am going to refuse it.  I have read alot of information on all the side effects which to me isn't side effects at all it's the way you are going to live in pain.....etc.....I think i would rather eat right....and ofcourse be watched closely and have quality of life rather than quantity.......   any opinions on this would be help......Please someone help about this drug...

     

    Arimidex

    I have been on this interesting drug for about 6.5months now! I am starting to have side effects for sure.  Isnt going to safe my life? I dont know. Thanks for telling us about the cyst on the left breast! I too have a cyst and the doctor does not know what is there. Since you said that behind the breast they found baby cancer, then on monday I will call and actually go in person and ask for a biopsy of that! The hospital where i am right now are slow at things!

    I am thinking about stopping this drug too. I have four kids, i thought about quantity too

     

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #19
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    NO side effects for me

    I was on Arimidex for 2 years with no noticable side effects - except my osteoporosis worsened.  I switched TO Tamoxifen for other reasons at 2.5 years.  NO noticable side effects from that and my osteoporosis improved.  I am no longer taking either and will have a Dexa Scan in 2017 to see what's up.  Bottom line is you don't know if you'll have any side effects if you never take it.  You can always stop.  I completed a little over 5 years of hormone therapy and didn't even know I was taking anything.  Not everyone has side effects.  Those who do are the minority - it's just that we who have no apparent side effects don't have anything to talk about.

     

  • Teach76
    Teach76 Member Posts: 351 Member
    #20
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    Surprised no Calcium supplement suggested

    As stated earlier, I am just beginning Armidex.  With everything I have read in posts and sites, bone thinning is definitely high on the list of SE.  I wonder why no one speaks of a Calcium supplement.  Perhaps the increase in internet information creates an "Oh, I thought you would already know that" attitude.  Throughout treatment I found myself bringing topics up rather than professionals.  Someone should create an "honorary degree" for survivors!  You folks have so much knowledge and experience - too bad there is not a paid market for it!

     

    Kathy

  • peony
    peony Member Posts: 306 Member
    #21
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    My MO started me on calcium

    My MO started me on calcium and vitamin D a month before I even started the Arimidex. I try to drink a glass of milk everyday as well. The last thing I  need is osteoporosis. I've been taking it since May and I haven't noticed any side effects. Sometimes you do get lucky.

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