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Life on aromasin

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Comments

  • camillegal
    camillegal Member Posts: 15,711
    edited April 2014

    Linda u always come thru with special material for questions--Thank u for taking the time to do this.

  • dventi
    dventi Member Posts: 100
    edited April 2014

    Linda - Thank you for the great info!!!.Know you are not a pharmacist or nurse but since you are a bevy of information was wondering if you or anyone else can clarify one sentence which was unclear to me and a little scary (see I read the whole article--lol!)

    What does irreversible steroidal (exemestane which is aromasin ) vs. reversible non steroidal (letrozole) mean?   Irreversible sounds scary to me... Whats irreversible?   And is exemestane a steroid ?  Thank you!!

  • camillegal
    camillegal Member Posts: 15,711
    edited April 2014

    dventi I think I can answer that but not explain it out loud, or written it's like jumbled in my head but someone will come with the exact answer with the right words. And I'll read it too.

  • LindaKR
    LindaKR Member Posts: 1,304
    edited April 2014

    I didn't like "irreversible" either. It's not a steroid, like prednisone, but i think steroidal has to do with the method that the drug uses to stop the production of estrogen. I did a little more research and found this explanation of how it works, it is a little easier to understand, I think - Aromatase (estrogen synthetase) is an enzyme that catalyses various steps in the conversion of androgen to estrogen in peripheral tissues; it is the principal source of circulating estrogens in postmenopausal women. Exemestane is a potent and irreversible steroidal aromatase inactivator. It inhibits the conversion of adrenally generated androstenedione to estrone by aromatase in peripheral tissues, such as adipose tissue as well as in tumours. Unlike the non steroidal inhibitors, exemestane acts as a false substrate for the aromatase enzyme and is processed to an intermediate that binds irreversibly to the active site of the enzyme, causing its inactivation. Exemestane does not affect the synthesis of adrenal corticosteroid, aldosterone, or thyroid hormone.  

  • LindaKR
    LindaKR Member Posts: 1,304
    edited April 2014

    i tried to add the link, but couldn't get it to work. If you search on exemestane and cancer care Ontario, it should bring up a PDF you can click on and it has the full article! Hope this helps a little! Just don't let the SE's stress you out, it's generally well tolerated, but the PDF has pretty extensive descriptions of the way the drug works.

  • LindaKR
    LindaKR Member Posts: 1,304
    edited April 2014

    and more info...insomnia doesn't have to be wasted!  

    Three aromatase inhibitors are currently available in the United States. Exemestane is a steroid-derived aromatase inhibitor that binds irreversibly to aromatase and permanently inactivates the available enzyme. Letrozole and anastrozole are reversible inhibitors of aromatase that compete with androgens for aromatase binding sites. All three aromatase inhibitors appear to have similar clinical efficacy despite these differences in pharmacologic properties.  From - 

    link

  • doxie
    doxie Member Posts: 700
    edited April 2014

    LindaKR,

    Thank you for digging this up and explaining it.  I've more or less understood the difference, but not bothered to work so hard to explain it.  Out of context the words "irreversible" and "steroidal" can be concerning to many.  Thank you for adding context.

  • dventi
    dventi Member Posts: 100
    edited April 2014

    LindaKR!! Thank you for the information-- put me at ease  - Im one of those who likes to know what I am putting in my body and the overall effects since the MO's really don't explain how/what/when about the drugs - they prescribe it because it is Standard of Care.  

    I had vertigo with Femara, so now I will begin aromasin.    On ward and upward...

    Ladies,Thank you again for your feedback... and will keep you posted..

  • camillegal
    camillegal Member Posts: 15,711
    edited April 2014

    Thank u Linda for all of u'r help.ThumbsUp

  • april485
    april485 Member Posts: 1,983
    edited April 2014

    Linda, thanks for the very detailed explanation that I could not provide cause I am too lazy and not knowledgeable enough Loopy

    dventi, I am on an approved "holiday" from Aromasin until next week cause my MO wanted to see if my elevated BP was related to the drug and because she wanted to see what side effects were related to me being 59 and already having arthritis in some of my joints, and which was related to exemestane joint pain.

    I have to say the truth. I have not felt this good in MONTHS! I am really weighing whether or not I go back on. I am scared not to cause it not only prevents recurrence, but protects my other breast. Since my body likes to make estrogen (I was >95% ER+!!) I am leaning toward going back on and hoping my side effects are lessened this time around which some report happening for them after a holiday.

    As for the BP, my PCP MADE me start taking BP meds despite me wanting to wait until it was out of my system and recheck because she was worried about long term damage. My BP was not that high either (144/92) but she knows my family history and wants me protected either way...so now I am on a medication due to a medication...how insane is that?????

    Ok, back to work. Have a great day "romies" xoxo

  • doxie
    doxie Member Posts: 700
    edited April 2014

    Just got back from the orthopedic doctor for trigger thumb.  Got a cortisone shot.  My thumb feels the best it has in ages because it is completely numb.  SillyHeart  Wow! relief after months of pain!  Of course tomorrow I'll probably still have pain from the trigger and now the shot.  I may get relief soon or in a few weeks.  If not, I'll have surgery.  

    My MO wasn't sure it was the aromasin, but since both thumbs are having troubles without anything to aggravate it and both got sore at the same time, seems likely.

    Hoping this solves the problem.

  • camillegal
    camillegal Member Posts: 15,711
    edited April 2014

    Doxie I hope so too, it's hard for the Docs to sometimes blame the meds, but it's funny how so many get the same things on the same meds. ?????

  • lahela
    lahela Member Posts: 145
    edited April 2014

    Thanks for all the info Linda.

    I'm starting Aromasin today after a bad run with Femara and I'm really anxious about it!

  • Kindergarten
    Kindergarten Member Posts: 2,883
    edited April 2014

    Dear lahela!! I wish you all the best!!!  I have been on it now almost 9 years!! It has kept the cancer away!! I hope you do well!! Blessings, Kathy

  • camillegal
    camillegal Member Posts: 15,711
    edited April 2014

    image

  • doxie
    doxie Member Posts: 700
    edited April 2014

    Thank you Cami.  Happy Easter too.  

    When do you sleep, my dear?  This was posted around 3 am and I know we are on the same time lone as Illinois Ladies.  

  • camillegal
    camillegal Member Posts: 15,711
    edited April 2014

    Oh Doxie my sleep is all screwed up, but remember I work from home so it can be whenever. LOL

  • Lily55
    Lily55 Member Posts: 1,748
    edited April 2014

    i had a long discussion with naturopathic bc doc and she said nothing is proven to work as  well as AIs.......very dispiriting to hear. Went to get prescription filled again today and health service will only dispense one make, NOT the one I have used until now. I drove away in tears.......they tried to say it will be no different but I know from experience on generic Femara that different makes do vary in side effects. I hope I am wrong but I had just got to a point of being able to cope with se's by using natural remedies etc after ten months.....now might need to start again, i hate this, i hate being mutilated, i hate taking neds that make me feel lousy,as i never get rid of the always tired feeling so have to force myself to do everything and i hate feeling so vulnerable that sonething as simple as this can upset me so much

  • camillegal
    camillegal Member Posts: 15,711
    edited April 2014

    Lily this is not simple. What all the real theories out there and proof of these things, no one has really given the aftermath to cancer. It's like once they get it and all treatment are done there is still more in this bag of tricks. and we're in this mess and since it doesn't affect everyone like it does some or most there's not a big study about what is faced afterward. We hear the great stories (and they are) even in commercials, but who comes on and says I'm cancer free and I feel like chit everyday. It wouldn't make anyone feel good so we don't hear about all this. But so much of this is part of the whole picture. It's a PITA  I do hope  can feel better and not have so many SE's

  • LindaKR
    LindaKR Member Posts: 1,304
    edited April 2014

    Lily55, I know a exactly how you feel, you're not alone in this. Though our families and friends don't understand, it helps to know that here people do understand. I too am so tired of this. 

  • Nettie1964
    Nettie1964 Member Posts: 627
    edited April 2014

    Cami said it all!!!  I too feel like chit everyday!!  Felt better during treatment than I do now!  It's a shame that all I heard was "it affects everyone different"!!  

  • lahela
    lahela Member Posts: 145
    edited April 2014

    I only lasted a week on Aromasin. Constipation, insomnia, severe night sweats, sudden weight gain and utterly debilitating joint pain in my elbows and worst of all in my jaw - I could barely eat!

  • camillegal
    camillegal Member Posts: 15,711
    edited April 2014

    lahela good that u really told u'r Doc, how are u doing now.?

  • april485
    april485 Member Posts: 1,983
    edited May 2014


    Amen to the side effects being given "short shrift" by doctors and others who are not walking in our shoes. I had a brief but lovely respite by going on a "vacation" and I have only been back on for a few days and this morning I woke up with my hands killing me again...sigh!

    Hang in there Romies...it is the best we got (aromatase inhibitors/tamox) against the evil beast that is BC! xoxo

  • Kindergarten
    Kindergarten Member Posts: 2,883
    edited May 2014

    Yes, so true, April!! I wish everyone well on this drug!!!

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited May 2014

    Hi Kathy! Haven't been on the site in a while. It is much more fun to play Scrabble!  Glad you are doing fine. I have a new family doctor; the old one discontinued taking my insurance. But I like the new one better anyway. He spent a lot of time with me; we discussed my two cancers; and unlike my old doc this one did not scold me for going without radiation and not being able to tolerate the Aromasin.  Such a relief.

    I hope we can go for a walk or two in the near future. I have put on 10 lbs due to having vertigo this past year. When I have that I can't go outside at all, but it is getting better with the exercises the ENT gave me.

    I had my first mammogram since my 2011 lumpectomy and everything looked good. For the first time EVER the letter stated that I had dense breasts and that I might consider further diagnostic tests. Now they tell me.  No wonder both my cancers were missed.

  • camillegal
    camillegal Member Posts: 15,711
    edited May 2014

    Happy

  • Kindergarten
    Kindergarten Member Posts: 2,883
    edited May 2014

    Hi, Dogs and Jogs! So good to see you here! I would love to walk with you!!! So glad your mammo was clear! I had dense breasts as well! MRIs and ultrasound testing seems to be the protocol now for dense breasts! Hope every thing continues to go well! Have a wonderful evening!!

  • kirstensmum
    kirstensmum Member Posts: 76
    edited May 2014

    Hi ladies

    I was wondering if any one had any advise for me, I started aromasin about 6 weeks ago following mets to my pelvis while on tamoxifen.  After about 2 weeks I started sweating to the point of soaking my clothes. It is not hot flushes and it lasts about 30 minutes at a time. My hair looks like I have been in a shower it is so wet. Luckily so far no other symptoms. It mainly happens during the day but has woken me sometimes at night.

    Any thoughts on this would be appreciated.

    Jennie

  • doxie
    doxie Member Posts: 700
    edited May 2014

    kirstensmum,

    So sorry that you now have mets.  Let's hope one of the AIs will control the cancer.  

    No, I've not had that on either aromasin or arimidex.  I did initially have quite a few hot flashes, but didn't mind them because I was always cold, still getting over chemo.  Maybe someone else can help.