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Life on aromasin

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  • fondak
    fondak Member Posts: 271
    edited June 2012

    I asked my oncologist's nurse practioner if there is a range in how positive you are and she told me there was.  Then she checked my report and told me that my ER was 95% positive.  She didn't mention the PR and I didn't think to ask.

    Is estrogen the main concern for all of us that are ER and PR positive?  I hear estrogen mentioned much more than progesterone.

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

    Ptdreamer--I feel the same way, I have 4 more yrs and instead of getting used to it and my body adjusting like other meds, it's getting worse. So what do we do just keep on taking it? I guess so and this is silly bit my skin is so so dry--I feel like I should be living in the everglades. 

  • donnajrn
    donnajrn Member Posts: 31
    edited June 2012

    interesting fact about aromasin I just realized.  Lately I have had high blood pressure...not super high, but higher that I have ever had.  It is way down 5 days after stopping the aromasin. (yes, just checked and this can be a side effect of this drug) Still having the aches and hoping they will leave soon.  These meds are rough!!

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

    Donna I never heard of that one.  I said many times a lot of these drugs have been used but not like they are now---which is a good thing more survivors--but we're all learning SE together

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited June 2012

    The two main things that worries me are my bones and my heart. My heart is healthy, except for the atrial fibrillation, but statistics show that the rate of heart disease for women increases in menopause due to the lack of estrogen.

    Not sure if raise in blood pressure is an SE, but I do have that.  Also, the fact that the liver values have to be checked every few months is a concern. But even Tylenol is bad for the liver. I guess all drugs are.

    PS My cholesterol also went up, but is still within the normal range--

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited June 2012

    I still haven't seen my onc to discuss my situation. I know he will insist on my trying something else---but I'm hoping he will agree with me when I mention my age and the Danish study.

    I've said it before, if I was 20 years or even 15 years younger I would probably take it.

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

    Just wondering is the dosagae for Aromasin still 25 mg, daily? That is what I took.Thanks!!

  • ginger_mea
    ginger_mea Member Posts: 135
    edited June 2012

    I'm not sure I understand the manufacturer info. my Exemestane is made by Roxane, does this mean its not as good?

    Also, has anyone experienced this.... when I get heated up right about the time I start to sweat (which I never actually get to) my skin gets sooooo ITCHY, all over, it makes me mental!  anyone?  Just wondering if its the meds coming out of my pores or something?

    Ginger

  • fondak
    fondak Member Posts: 271
    edited June 2012

    kayb - Thanks for the info on progestrone.  Also, about milk thistle, when I started taxol my liver enzymes shot way up.  It was more than twice of the top end of normal range.  My oncologist wasn't familar with any natural supplements so I called my radiation oncologist which I had met with before I started all my treatment.  He was very big on the holistic side of treatment and told me to take milk thistle.  The next week I was back down in the normal range and didn't have any more problems.  After finishing chemo and then radiation he told me to continue to take it for 3 months.

    Kindergarten - I'm taking 25 mg of Exemestane 

    Ginger_mea   I feel like I'm stinging which turns quickly to itching.  It started with my arms and legs and now it's all over.  I asked my dr about it at my last visit and she told me that it is part of the hot flash.  She said it is common.  I was relating the stinging as a trigger for a hot flash and not part of the hotflash.  It seems to me that sometimes when I hear something stressful or have a stressful thought I am more prone to have a hotflash also.  That may just be a coincidence.

  • ptdreamers
    ptdreamers Member Posts: 639
    edited June 2012

    Kayb, I take Liver Helth Complex by Trunature which has milk thistle,curcumin and dandelion in it. I get it at Costco.  Ginger mea, if you are tolerating it well the Roxane is fine. I am taking that brand now but I have more joint and muscle issues and want to see if the Greenstone will be less problematic.

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

    I do get some hot flashes, but I'm in my mid 60's but my skin gets so itchy Im scratching like there are bigs under the skin all over--I does stop bt I never put it together actually---right now I feel like all tingyl thruout my body like all my nerves are partying up in there and I hate this feeling-it's kind of funny I never complained foer all the opers, chemo, and rad just took it--now I feel like I'm always hurting and compaining--I can't stand myself. And now my fingers are stiff so I type worse than usual, LOL.

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited June 2012

    It just doesn't make sense to me that it doesn't come in different strengths.  My onc didn't have an explanation.  But shouldn't a 70 year old get a smaller amount than a 40 year old? The problem is, these AIs haven't been on the market that long so nobody really knows much about them. Nor does anyone know what the long-term problems are---That is scary to me.

    In the early 60's I was on a birth control pill. It was very strong and caused me to feel bloated and pregnant all the time so I wasn't on it for long. Later on, it was found that it was much too strong and had caused strokes and heart problems.

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

    Dogsand----Everyone know who reads anything I say I've said it before--most Drs don't know the long term effects cuz we are getting thru cancer more now than ever--good thing, but all that is thrown at our bodies is horrific and it does what it's supposed to do---but what about SE my old body has aged even more after the yrs. of chemo  and rads.

    Kayb thanks for the info on Mag. another thing to think about ughh

  • bubbe
    bubbe Member Posts: 26
    edited June 2012

    Thanks for that tip about magnesium. It should also be taken with calcium supplements to make those more effective.







  • fromMontreal
    fromMontreal Member Posts: 5
    edited June 2012

    Lolahasit and all: I also have a dry mouth and cough since I started 4.5 months ago, but didn't think it could be of aromasin. At first the cough was very strong, now - rear and dry. Before to start aromasin I took 4 months break after Tamoxiphene which caused all possible SE, especially severe headache and I waited untill I feel better.  As to Tamoxiphene SE's - they are all gone, or almost, still I have some tinnitus and deafness. I was afraid to start aromisin as I knew already femara and tamox which both drive me crasy after 4-6 months. Fortunately, by now on, I had no headaches, but have bons pains, especially in the right hip, very strong periodical limph node pains without being swallen - in groins, in the back neck - (Does anybody has this?); increasing non-stop tiredness, fatigue, tired legs, leg crapms started this week (just 2 times). I took it a pill at lunch, but sometimes it couses drowsiness and feeling of mortal tiredness, so now I will try to take it at 8pm  and will see.  But all these SE are very mild comparing to femara and tamox. I can tolerate it and hope they will gone with the time. Thanks to all who positively posted about aromasin, especially to Kintergarten, it's incouraging!

  • AnnE16
    AnnE16 Member Posts: 38
    edited June 2012

    kayb,

    you can find a sleeping mask at bed, bath and beyond and I know I have seen them at TJ MAxx and Marshalls. 

  • ptdreamers
    ptdreamers Member Posts: 639
    edited June 2012

    kayb, also at Walmart and e-bay.

  • mybee333
    mybee333 Member Posts: 672
    edited June 2012

    I  am the same on Aromasin.  I fall asleep but have early morning awakening, usually with vivid dreams.  I am noticing I seem to fatique more easily, but there is a lot going on too.

  • stephN
    stephN Member Posts: 133
    edited June 2012

    I found a drink with valerian, melatonin, lemon balm, and a couple other sleep inducing herbs that I drink before bed.  It seems to help.   

  • ptdreamers
    ptdreamers Member Posts: 639
    edited June 2012

    You could set your clock by me. Every ninety minutes to two hours I'm awake and need to use the bathroom. That means I 'm up three to four times a night. would love to have four to six hours of uninterrupted sleep, but haven't for years.

  • rayofsun
    rayofsun Member Posts: 18
    edited June 2012

    Apple I am doing ok. Wow this thread took off. I havent been on this site for a bite. Needed a breast cancer rest.I continue on aromasin, I am on the greenstone generic and take it at night. I get achy knees but think it is from age.



    Rayofsun

  • kira1234
    kira1234 Member Posts: 754
    edited June 2012

    Well it has been a week now. So far things are going well with this drug. I had to wait a bit longer than planned before I was totally free of the effects from the Femara. Anyway so far I'm feeling OK, no rash or cough. I do hope it continues.

    The Aromasin has been so much kinder to me so far. I have had few hot flashes in comparison to the Femara. If things continue as they are at this time I will be very happy!

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

    Oh kira I hope they stay that way for u.

  • ptdreamers
    ptdreamers Member Posts: 639
    edited June 2012

    rayofsun, I am hoping that my next refill is with the Greenstone so I can compare it.

  • mybee333
    mybee333 Member Posts: 672
    edited June 2012

    Am wondering ......since Aromasin is in some ways a steroid, would that make a difference with mood?

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

    Mybee I was thinking, since it's some kind of steroid in it shouldn't we feel some energy?

  • mybee333
    mybee333 Member Posts: 672
    edited June 2012

    How about muscle definition.  That would be nice...........

  • Kindergarten
    Kindergarten Member Posts: 2,883
    edited June 2012
    Hi, Mybee, You asked such a great question and I keep asking my onc the same thing about aromasin, steroid, mood issues. My issue is, since going off aromasin after being on it for almost 7 years, I have had mood swings, anxiety and some depression. I am a pretty upbeat person and while on it, I had some of those psychological side effects, but everything seemed to escalate once I went off it. I was put on Lexapro to ease these new side effects, but I am off of it now. My onc told me she really is not sure why I am having issues after being off it, but did admit aromasin has a steroidal effect and that coming off them can cause some issues.  She also said that I was on it a long time and my body went through some adjustment coming off of it.  I have been off of aromasin for  7 months and I am feeling so much better, but still curious as to why I had such a difficult time coming off this inhibitor!!!!  I wish you all well on aromasin, it does do its job of preventing a recurrence!!!, but just be aware of the side effects and let your onc know what is going on.  Sorry to ramble on, I just hope I can be of some help to those of you just starting this drug. It is such a Catch 22, if you don't take something to prevent a recurrence, cancer still is lurking, but these drugs are definitely hard on your body!!!! Hugs to you all!!!!Smile
  • fondak
    fondak Member Posts: 271
    edited June 2012

    Did any of you see improvement after the first 6 weeks on it?  If so, was it with sleep, joint pain, fatigue or a combination of side effects that improved for you?  Was it a dramatic improvement? 

    My doctor told me to give it 6 weeks and I should feel better and that the fatigue was due to me just finishing radiation but I can now tell that the fatigue is from aromasin.  I stopped taking it when I had my surgery for 2 weeks.  I've been back on it 3 weeks and I am very tired.  The second week off of it I felt remarkably better and that was 7 days after having my uterus and ovaries removed.  I had energy, no joint pain and I could sleep.  I'm hoping she was right about the 6 week period but I'm beginning to wonder.

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited June 2012

    My onc had me start on it very gradually - one pill every other day for two weeks. He said I might have side effects, but didn't tell me what they were. I did fine for two months. Except for some tiredness and one bad hot flash daily I did pretty well. I thought I was home free!  But then after 2 months the side effects began.

    Others have side effects right away and then they subside.