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Arimidex

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  • burley
    burley Member Posts: 248
    edited April 2011
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    As I sit here eating my Lean Cuisine...am I the only one who's gained 10 pounds while being on Tamoxifen and Arimidex?

  • grneyd5600
    grneyd5600 Member Posts: 18
    edited April 2011
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    Burley, no you aren't I have gained 30 lbs since the start of Taxol and Arimidex.  Nothing I do helps - walking, elliptical, low fat.  Went for a motorcycle ride with hubby tonight and couldn't get my leather chaps zipped.  He tried to help and then said "boy, those are tight aren't they".  Then he couldn't understand why I burst into tears. 

  • Prairiemermaid
    Prairiemermaid Member Posts: 67
    edited April 2011
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    Hi all -- Just dropped in to say "Hi" and relay some information I learned about Arimidex recently.  I've been on Arimidex for a little over a year, with little or no side effects.  However, I had developed mild irritable bowel syndrome (IBS) over the past year after my bilateral mastectomy and starting the medication.  So, after meeting with my oncologist a couple of weeks ago, I went off the Arimidex for 2 weeks to see if it was contributing to the IBS.  A couple days after quitting the drug, I started feeling light  headed and fatigued.  It was alarming and I had no idea what was causing it -- I had just seen my oncologist the week before and felt fine.  So I asked myself "what has changed?" Of course, it was getting off of Arimidex!  So I went searching for "withdrawal symptoms" -- and I found a couple of web sites/discussion boards on the subject.   Several of the women there described the exact same symptoms as mine.  Somebody mentioned blood pressure changes, too, so I got mine checked, which turned out to be lower than usual (110/70).  I thought that might have caused my light-headedness, if it changed suddenly from my usual 20-30/70.  I'm happy to say that these symptoms went away in about three days, however my my BP is still a nice, low 110/70.   My IBS is still here, too, so I will be going back on Arimidex in a day or so.  Have any of you ever gone off Arimidex and had "withdrawal" symptoms like this?  Or do you know someone who has had this?  Some of the women at the discussion boards have the symptoms much longer than mine lasted.  Like side effects of the drug itself, I guess these withdrawal SEs can vary among us.  
     
     Another question/worry I have is this: when I start the Arimidex again, will I develop new side effects I never had before?  My oncologist says "no", but I'd really like to hear from you gals...
      
    <3  Hugs to all, Sharon 
  • Prairiemermaid
    Prairiemermaid Member Posts: 67
    edited April 2011
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    Just wanted to add that I feel for all of you who are suffering with side effects and I think about you often!  You gals are the bravest of the brave...

  • Juparker
    Juparker Member Posts: 1
    edited April 2011
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    No, you're not the only one. sigh.

  • nancyd
    nancyd Member Posts: 557
    edited April 2011
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    Touching base here after taking Arimidex for a bit longer. Last time I posted was about two years ago. Some of my SEs are the same, some have disappeared, and some new ones have cropped up.

    Same: Joint pain. I even did a study to see if glucosimine chondroitin would help. After six months of taking six huge capsules a day, I came to the conclusion that, sadly, no it didn't help. But Aleve does.

    Comes and goes: Sniffles/sneezing/watery eyes. I am leaning towards feeling that this might be seasonal allergies, except that it happens at times when seasonal allergies are supposed to be gone.

    New: Dry skin. So far, only on my face. And to add to the pleasure, multiple small breakouts (white heads). How can one have both at the same time?!

    Gone: Shortness of breath. Don't know where it went, but the only time I have it now is when I have a good excuse, like a chest cold or have run up several flights of stairs.

    So that's it after two-and-a-half years on Arimidex. I'm staying with it for now, but I have a question for anyone who has had skin problems while on it. Has a dermatologist been able to help?

  • rcca
    rcca Member Posts: 13
    edited April 2011
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    NancyD, My dermatologist prescribed metrogel for the white heads. It has worked for me.  It is an antibiotic gel. You may be able to get your onc to prescribe it.

  • tinat
    tinat Member Posts: 2,235
    edited April 2011
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    rcca and NancyD:  Thanks for bursting my bubble Yell.  I've struggled with acne my whole adult life.  Took my second round of Accutane in my mid-40s (oldest patient my dermatologist ever prescribed it for).  Fluctuating estrogen levels were a definite trigger, but not the only one.  I'm in my 50s and officially menopausal and still dealing with it.  I was hoping that the total shutdown of estrogen after taking Arimidex would give me a break once and for all (yay-a bright spot).  Now you tell me I have more breakouts ahead of me?  Boohooooooooo! 
  • rcca
    rcca Member Posts: 13
    edited April 2011
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    TinaT-Good News, My dermatologist said when I totally in menopause it will get better.  Kiss
  • nancyd
    nancyd Member Posts: 557
    edited April 2011
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    Thanks, rcca!  If my onc can't do it, I'll see a derma.

    Tina: I never had a skin problem until I was in my late teens and went away to college. I was always a late bloomer, lol. Things calmed down and flared up over the years. I read somewhere that your hormones go through changes every seven years and that seemed to be the trigger/schedule for my adult acne. I never wanted to try Accutane...was very leery of it and it seems there were some SEs they are just learning about. I went through menopause about nine years ago, so I should be totally out of estrogen now, especially with taking Arimidex.

    These little whiteheads (and I can only really see them in my 7X mirror) are new in the last six months. A nurse told me they happen WITH the dry skin...apparently the dry skin allows little breaks where the bacteria gets in and festers. But moisturizing hasn't helped, OTC topical acne meds haven't helped, so I think do need something stronger.

  • Prairiemermaid
    Prairiemermaid Member Posts: 67
    edited April 2011
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    OK, I went ahead and started the Arimidex again on the 17th of April after a two week hiatus.  And I am happy to report that I have no new side effects.  I've been on A for 14 months now. As far as I can tell, aside from a lower stamina level (I get *totally exhausted* after about 5 hours on my feet) and very minor joint stiffness here and there, I still don't have any serious Arimidex side effects.  I don't know if those things (lower stamina and very minor joint stiffness) are the medication or just my age!  It may be both, and also still building strength after the 2010 surgery...?  Anyway, I am going to get my BP measured soon to see if it has gone back up to around 120/70.  If so, then A may be raising my BP a bit.

    But the bottom line is that I have not developed any new SEs after coming back on A.  Hope that helps anybody out there... 

  • tinat
    tinat Member Posts: 2,235
    edited April 2011
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    Prairiemermaid:  That's encouraging!  I've only been on Arimidex for 2 weeks - so far, so good!
  • burley
    burley Member Posts: 248
    edited April 2011
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    So that's probably where these little white heads have come from!  They are new, and frustrating-especially since my forehead is totally exposed now with no wig or hat.  I get them mostly on my forehead or right around my eyebrows, and a couple on my chin.  I've used the cream from my son's Proactiv, and it seems to help a little (which of course makes my skin drier.)  I moisturize daily anyway, so that hasn't changed any breakouts one way or another.  Humpf.

  • Prairiemermaid
    Prairiemermaid Member Posts: 67
    edited April 2011
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    TinaT -- Yay! :-)  Hopefully it will continue that way!  When I first started I was so anxious about developing side effects, and I told my oncologist about all the SEs I'd been reading about.  She said many of her patients have few or no side effects and that very few, of the 100s of patients she has prescribed A to, have had to change meds because of SEs.  She said "You might be one of those that have no SEs at all."  I took that hopeful little comment home with me and started Arimidex the next day.  I have had few to no side effects all year.  However, I did develop moderate IBS and wondered if the Arimidex was causing it.  That's why I went off for two weeks.  It turns out the A had no effect on the occurrence of IBS, so I went back on the A... 
  • carolehalston
    carolehalston Member Posts: 7,889
    edited April 2011
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    I took my first few doses in the morning and felt so bad I didn't know if I could continue taking the little white pill.  Then I started taking it at night and continue to do so.  Night works much better for me.

  • buddy1
    buddy1 Member Posts: 529
    edited April 2011
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    Has any one had a nuclear bone scan?   I now have secondary HPOA and I cant help but wonder if its related to teh arimidex.

  • nancyd
    nancyd Member Posts: 557
    edited April 2011
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    Burley, I think I hit on a combination of treatments that work for me (knock wood!!). I use olive oil as a moisturizer, then dab on some OTC acne gel in areas that are prone to break out. I put the olive oil on right after I wash my face, followed by the gel. I give it time to dry before I do my daily make up.

    I started it this week, and I can already see a difference. The white heads are much fewer, and none have enlarged to pimples. I'd love to have clearer skin for the summer. I hate being out in hot weather and having my make-up get wiped away by sweat.

  • buddy1
    buddy1 Member Posts: 529
    edited May 2011
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    I was wondering if any of you have ever had a nuclear scan done on your bones to investigate bone pain.  I have just been diagnosed with HPOA or HOA, this shows my bones are doing somthing. I have no lung issues it is normally linked with. Just wondering if it might be from the Arimidex.  Thanks

  • grneyd5600
    grneyd5600 Member Posts: 18
    edited May 2011
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    Buddy1

    I have a bone scan being done tomorrow.  I presented with some rib pain at my last check up and they ordered a chest xray.  Xray showed a 2.3 cm spot on my right rib.  Onc said that because I had had so much bone/joint pain he was willing to consider a bone scan.  After thinking about it for awhile I finally decided to go. I have the scan tomorrow. 

    I still believe the joint/bone pain is probably from the Arimidex but just figure better to do the scan and find nothing that not and wonder. 

  • buddy1
    buddy1 Member Posts: 529
    edited June 2011
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    Jackie Have you heard anything ?

  • anumacha
    anumacha Member Posts: 61
    edited June 2011
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    carolehalston That was me too, so I take it at night and sleep.  I am tired all the time but work 40 hrs aweek so SAT is my day to sleep and relax.

  • bestock
    bestock Member Posts: 186
    edited July 2011
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    I have a friend with mets,to lungs and  Bones

    and she has had flosemax?(spelling)? it is anti hormonal, she is only progestrone post. I feel like her onc is not good, I went to him for a while, and had to change,

    he gave her  a few years, but she is not getting better I have suggested a  2nd opinion, but she has notdone it yet. any info on this course of treatment..

  • patoo
    patoo Member Posts: 5,243
    edited July 2011
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    bestock, with mets she is Stage IV, so maybe, if you get more information on her treatment, stats, some on one ot those threads can give you pointers.  Your friend is probably in deep depression; she is blessed to have you as a friend who wants to help but only she can do it.  Are there other family members who may be able to assist you in helping her?

  • bestock
    bestock Member Posts: 186
    edited July 2011
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    Dear Patoo, she lives with a grown daughter and granddaugher. She cannot work bbecause the cancer in in her lungs and she is winded all the time. The bank where she works is going to do a fundraiser jointly with our church. (soon) That will bless her, Her dr. is smart but no bedside manner, I like mine much better but she will not go to get a second opinion..??

    Please keep praying for her..

    thanks

  • patoo
    patoo Member Posts: 5,243
    edited July 2011
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    You got it - prayers going up. 

  • Karin007
    Karin007 Member Posts: 1
    edited October 2011
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    Anyone have hair loss and tingling on your head - it reminds me of before I lost my hair after my first couple of rounds of chemo. Anyone got an answer to help out with this SE?

  • sflow
    sflow Member Posts: 20
    edited October 2011
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    I had that tingling on the head and skull after about 3-4 months on Arimidex--funny you mentioned that.  No hair loss, though.  So many odd side effects the doctors don't tell you about. I googled it and found out it was common.  Hope it goes away like mine did.

  • bestock
    bestock Member Posts: 186
    edited January 2012
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    My friend I mentioned a few months ago passed in Nov. She had all the treatments, Chemo, Rads, Bilateral mast., took armidex(but quit) some other new chemo when she had mets, it was in her bones and lungs, she was 57 yrs old. I do miss her and realize that BC can come back and haunt any of us survivors.

    Thanks for all the prayers, she is fine now with Her Lord Jesus, but her children and grands and friends miss her so.

  • tinat
    tinat Member Posts: 2,235
    edited January 2012
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    bestock - So sorry to hear about your friend.  It's certainly a reminder that life is fleeting and we should enjoy every day.  I guess we are all just doing the best we can to deal with this crummy hand we've been dealt.  All we can do is gather as much info as we can process, try to get access to the best doctors possible, and make the best choices we can.

    Again, sorry for your loss...

  • balsie
    balsie Member Posts: 228
    edited January 2012
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    So sorry Bestock to hear of your friend passing~  Did she quit taking Arimidex because of the side effects? When ever I hear of this I always wonder why?  Again so sorry...I know the heart ache I too just lost a friend to cancer.  Just so hard

    Be Well

    Balsie