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Life on aromasin

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Comments

  • mybee333
    mybee333 Member Posts: 672
    edited June 2012

    And how do you feel, estrogen free as you are?

  • Kindergarten
    Kindergarten Member Posts: 2,883
    edited June 2012

    Hi, Dogs and Jogs, My last Dexa scan showed that I have osteopenia, but it has shown that yearly!!!! I will have another scan in January of 2013. MYbee, When I went off the aromasin, which is mildy steroidal, my appetite did diminish, but anxiety and depression were side effects of going off of it. Wierd!!!! I did not have anxiety and depression when I was on aromasin!! So I am on a low dose of lexapro!! My new onc in CA may put me on Femara!!!

  • mybee333
    mybee333 Member Posts: 672
    edited June 2012

    Does the steriodal component of Aromasin make you hungrier?

    My MO is thnking of an anti-depressant for me but counselor said we'd give it a few more wks. and see how I felt.

  • Kindergarten
    Kindergarten Member Posts: 2,883
    edited June 2012

    It was only my third onc that finally admitted that aromasin, because of its steroidal effect, probably increased my hunger. I gained alot of weight my first year on it, then went on a low carb diet, which I am still on, and lost the weight.  I am very carb sensitive.  However, since being off of aromasin, my hunger has diminished considerably and I have noticed that pounds come off a little easier too.  But please, try to take the aromasin as long as you can, not everyone has the same side effects. My friend who was on it actually lost weight while on it and ate pretty heartily. I feel now that I have done everything humanly possible to control and prevent a recurrence. I will be 8 years out, and I can honestly say that I am glad I took the aromasin. I also think that part of my weight issues were due to being in menopause and I also had a complete hysterectomy right after chemo and bi-lateral mastectomy!!!!!  I am sure you are going to do great on aromasin, just make sure you let your onc know of any side effects. Your onc will do everything possible to help you!!! hugs to you!!!!!

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited June 2012

    Mybee: Do some research before you take an anti-depressant. I took them for years and think they helped cause my breast cancer. Since they suppress your immune system they are not good for you.

    If thinking has changing thru the years of what I'm saying, then I stand corrected!  But please research and get a second opinion.

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited June 2012

    Very true!   I was constantly hungry for carbs. It was infuriating and I gained a spare tire around my middle which I working hard to get rid of!

  • stephN
    stephN Member Posts: 133
    edited June 2012

    I have the dry mouth too.  Effexor can cause it.  The aromasin probably makes it worse.  It dries up everything!  ;o)

    I'm having trouble sleeping and having weird dreams.  I've gained weight, but I think it's from the hyster/ooph I had in Dec.  My body went from having too much estrogen to having zero with the aromatase inhibitors in a period of about two weeks.  I think I totally freaked it out.  

    Thanks for sharing your tips.  I'm going to try taking it right before I go to sleep and see if that helps!  My teenagers are keeping me awake late, so maybe if I take it late at night, I'll get a few hours of sleep.  I'm exhausted!

    Steph 

  • bak94
    bak94 Member Posts: 652
    edited June 2012

    Hi everyone!

    I started taking aromasin about 6 weeks ago. I am gradually feeling worse! I am very stiff and sore in the morning and don't want to move, but as the day gets going I start to feel better. I have had lower back issues most of my life and this has seemed to aggravate it, very frustrating. I am only 3% er positive so I am not even sure it is worth taking it, but sometimes I feel I must do whatever I can. My doctor feels very strongly about me being on it. Oh, unrelated, I am also having problems with lymphedema. It seems like just everyday activity is so difficult, like getting up and getting ready for work. Will it get easier? My last chemo was in October and last radiation in March, I thought I woould be feeling much better by now:(

  • mybee333
    mybee333 Member Posts: 672
    edited June 2012

    stephN ~ Teenagers are a whole other issue.......  :)

  • stephN
    stephN Member Posts: 133
    edited June 2012

    Haha, mybee!  Amen to that!  

    bak94, I changed from letrozole to aromasin(exemestane, actually) because of joint pain and stiffness.  I just couldn't take it.  I am more stiff now than I was a couple of weeks ago when I first started the aromasin, but still nowhere close to as bad as it was with letrozole.  But my point--and yes, I do have one :)--is that you might have better luck with another AI.  The other option my onc gave me was to take something like celebrex or mobic everyday to try to help the pain.  Hope you are able to find some relief!

    Steph 

  • bak94
    bak94 Member Posts: 652
    edited June 2012

    Steph, I may look into that, thanks! Does yours get better later in the day? As long as I keep moving I am ok. If I sit or lay down for a bit I get all stiff again. Good reason to keep moving:)

  • Kindergarten
    Kindergarten Member Posts: 2,883
    edited June 2012
    Good news, when you go off aromasin, the good side effects stay(keeping the cancer away) for at least 5 years, but the bad side effects go away. In the meantime while you are on it, lots of exercise, to keep the joints and muscles moving, and drink lots of water, to flush out the bad stuffWink thoughts and prayers are with you all as we continue on this journey!!!!
  • donnajrn
    donnajrn Member Posts: 31
    edited June 2012

    I was on Tamoxifen for 3 1/2 years, and because of the new data, and side effects of the tamoxifen my onc started me on Aromasin 3 months ago.  The side effects I had were horrible.  Terrible joint pain, esp in my shoulder (that really affects sleeping, turning and getting out of bed-impossible), leg aches and walking like I was over 100.  Yes, when working and being active the discomfort was not as bad but at home, after riding in a car........it hurt so badly to walk.......so, after discussion I stopped this med (just this week) and restarted tamoxifen........she said: I thought you did not like tamoxifen because of the side effects,I said right but cannot remember what they were because this is so bad.  Still having the aromasin aches, but it has only been 4 days.

  • stephN
    stephN Member Posts: 133
    edited June 2012

    Bak, yes, my aches get better later in the day with aromasin.  They're actually not bad at all right now.  Mainly just my feet and hands and not too hard to live with.  i work on the computer so I am sitting most of the time, but I try to get up and walk every little while.  With letrozole, I felt like I had the flu all the time.  It was really awful.  I'm keeping my fingers crossed these aches and pains stay fairly mild.

    So, I understand where you're coming from, Donna!  I hope Tamox is better for you again and that the aches and pains fade away. 

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited June 2012

    I've been on Arimidex for 14 months and am currently having an 8 week holiday off it and then will start Aromasin on onc's orders.

    I've had such horrible se's on Arimidex - very bad joint pain and insomnia - I've also developed degenerative arthritis in almost all my joints while being on Arimidex.  I'm hoping I'll have a much easier time on Aromasin, but after reading these posts I'm a bit scared that it will be the same.

    I've been off the Arimidex for 4 weeks now - and I feel fantastic!  I shudder every time I think of going back to that pain and sleeplessness.  I have to take something as I was strongly er+ I know I don't really have a choice, I want to do everything I can to prevent a recurrance.

    Trish

  • camillegal
    camillegal Member Posts: 15,711
    edited June 2012
    I've been on A for a littl over 1 yr. and (to me) it's getting worse. I type with 2 fingers and still have to stop te other ones don't work well. And my  legs don't just cramp up they stiffen with pain I take K-Dur for the cramping---I'm low on pot for another reason and I tought it would get better, but nothing is it's just worse--I see my onc in a couple of weeks, so I get relieved reading others are having someof these problems, not happy for anyone, but just knowing I'm not the only one makes me feel better. People just don't understnd that I don't feel better I men I limp and walk like I'm 90 and I just make a joke of it, but the pain is o joke and it's exhausting for me. After I walk around (excercise) I feel like I did a marathon and my eyeballs hurt. I have also been told I have severe arthritis NOW , So Tell me please how can u do daily excercise in such ppain--oh nd I lso have LE so I swell too. I know I'm ranting, it's 2am and again I'm awake.. Well the last couple of days have really been awful so I'm all wound up Sorry.
  • Mopsy
    Mopsy Member Posts: 3
    edited June 2012

    How do you know if you are "strongly ER+".  Is that a score on a report?

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited June 2012

    I am wondering if the aches and pains from Aromasin will ever go away.  I am so arthritic now - it came on within a few months of being on Aromasin and has not gone away. I have a really tough time bending my knees; they really hurt.  I had some arthritis before the Aromasin, but it is so much worse now. 

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited June 2012

    So for those of you who have finished with any of the AI's, do all your joints get back to normal?.

    What about all the other SE's? Do they go away as well?

    I sure hope there is no permanent damage to my (already osteoporotic) bones----

  • camillegal
    camillegal Member Posts: 15,711
    edited June 2012

    Dosand jogs--I remember when all this started and i was told (after all my tests) that I had some arthtitis---then after all the chemo and had tests I was told I was loaded with arthritis. Now it's worse and I can't help but think what has all of the treatment done??

  • MaryNY
    MaryNY Member Posts: 486
    edited June 2012

    Camillegal: when you said you were "low on pot" I thought aha, maybe that's what people are using to get through this.

    I'm just three weeks in and so far the SEs are not too bad. I have hot flashes and night sweats. I had those while on Tamoxifen but the hot flashes seem to be less frequent but when they happen they are so much more intense. My face gets so hot that my glasses steam up! Leg cramping too, but started to eat bananas and not sure if it's a placebo effect but haven't had cramps since. The most troubling SE is an increase in my existing neuropathy. The neuropathy I have is a residual side effect of the transverse myelitis I was diagnosed with eight months before breast cancer. I was paralyzed completely on the right side from toes to waist. I had steroid treatment and intensive physiotherapy and learned to walk again. Tiredness, illness and temperature extremes aggravate the remaining neuropathy and chemo was not kind to it so I went back for more physio. 

  • ptdreamers
    ptdreamers Member Posts: 639
    edited June 2012

    mopsy, your pathology report show the percentage of ER receptivity. I am also having some issues from the aromasin. I am wondering though if it is affected by the fillers. The name brand gives me less problems. One generic that I have been on seems to cause more. I have requested the generic made by the manufacturer of the name brand to see if it is any better. My next refill should be this generic and I will see.

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited June 2012

    What exactly is in the fillers? 

  • stephN
    stephN Member Posts: 133
    edited June 2012

    New symptom since starting aromasin, carpal tunnel syndrome.  My hands go numb all the time.  Seriously, these drugs are bad news.  I know they are good for cutting breast cancer risk, but at what point does the risk of everything else outweight the benefit of cutting your breast cancer risk?  

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited June 2012

    Yes Mopsy - my path report shows the number of cells stained and while there's no actual percentage named it says whether it's weak, moderate or strong.  My IDC is strong while my ILC is weak to moderate.

    Trish

  • camillegal
    camillegal Member Posts: 15,711
    edited June 2012

    MaryNY hhahahaha  I didn't think of that--and usually i do. I hope u'r glasses get better too- and

    Steph my fingers are doing that too==my whole body is one big ball of pain lately more than usual. In my head all I hear is me moaning--at least I hope it's in my head

    These meds are brutal (sp) but then again none of this has been a walk in the park.

  • ptdreamers
    ptdreamers Member Posts: 639
    edited June 2012

    dogs and jogs, all drugs have the active ingredient(in this case exemestane) and then fillers such as lactose,dyes etc. generic drugs are allowed to have the same main ingredient(exemestane) but cannot have the same fillers exactly. For some people it is not the active ingredient that is causing problems but whatever fillers they use. That is what I'm trying to find out. Hope this makes sense. Let me know if it doesn't.

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited June 2012

    Thanks ptdreamers!

  • camillegal
    camillegal Member Posts: 15,711
    edited June 2012

    Ptdreamers that does make perfect sense and I ever knew or heard of that.So sometimes the generic can react differently that's the reason? Thanks for the info--u must do a lot of oh geeze I can't think of the word and I held it here for a whike--u know what I mean I hope. LOL

  • ptdreamers
    ptdreamers Member Posts: 639
    edited June 2012

    camillegal, Yeah it is. Just like we all have different allergies we can react differently to the drugs we get . I am trying to get the other generic made by Greenstone because it is made by the same manufactuer as the name drug Aromasin. I am hoping that it is the fillers in the generic I am taking that cause some of my problems. I went back on the real stuff for a couple of weeks and it seemed different. Maybe just wishful thinking but I figure it couldn't hurt to see. I will be on this for four and a half more years if I can tolerate.