Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Life on aromasin

1…1516182021…187

Comments

  • Katarina
    Katarina Member Posts: 99
    edited July 2012

    On it now 2 months:

    - Fatigue (no benefit from the steroids)

            - Dizziness

            - Joint pain and extreme stiffness

    - Increased lower back pain

     So far, a big improvement over Arimidex. If these SEs stabilize I can live with them. I'm 95% ER positive.

     Hugs,

    Kat 

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

    Katarina, u have all these SE and it's still better than Armidex.? Wow

  • phxsunshine
    phxsunshine Member Posts: 156
    edited July 2012

    I'll chime in on the chubbles gain.  I have gotten pretty skinny since about 4 months after I finished rads, started tamox and began eating better in earnest.  I was only on Aromasin for a whole 9 days and didn't change any of my habits, but I noticed blub gathering on my abdomen within that time and now that I'm off of it for a week, the blub is almost gone.  Again, I haven't changed my eating or exercise/activity level.  It's not in your heads or on your plate.

  • shayne
    shayne Member Posts: 524
    edited July 2012

    Not happy about this!  Havent noticed it, but im only 2 weeks in.....Lost 12lbs pre dx......and dont want it back!  Im on green smoothies for breakfast everyday, and going to bump it up to twice a day.  They totally fill me up, and tho high in calories, they have lots of fiber - and you know what that means.......

  • pupmom
    pupmom Member Posts: 1,032
    edited July 2012

    Shayne, don't worry unless it happens! I haven't gained any weight. I started getting my middle age bulge around 40, with no weight gain. That hasn't changed either, unfortunately, athough at age 63 I've gotten used to it. 

  • shayne
    shayne Member Posts: 524
    edited July 2012

    I have noticed i am ravenous lately........trying to make good choices.........

  • shayne
    shayne Member Posts: 524
    edited July 2012

    this weekend noticed fatigue......and moodiness....anyone else?

  • TKSit
    TKSit Member Posts: 33
    edited July 2012

    Darn, Shayne. Hope the fatigue lets up. I will start Aromasin next week and am looking forward to sharing success on this med with you! Trying to stay mentally positive before I start! I have been keeping an eye on this thread to get a heads up on what to possibly expect. Only help for AI fatigue with me is exercise.

  • shayne
    shayne Member Posts: 524
    edited July 2012

    See, thats what works for me too, exercise.....but im 5 weeks out from rad treatment, and they told me 6 weeks no exercise.  Ive got one more week to go.  I have been going to spin class and just being super easy about it......and walking, but its not my usual gym workout.  I miss it, and I know that it adds to my depression as well!  So maybe these arent symptoms of SEs.....  

  • shayne
    shayne Member Posts: 524
    edited July 2012

    Just wanted to ask you ladies - how many of you were dx with DCIS, and are post menopausal???  

  • phxsunshine
    phxsunshine Member Posts: 156
    edited July 2012
    I'm 12 days off of aromasin and I'm feeling like myself again.  I slept for 6 hours last night, the most I've slept in months, with no sleep aid, no xanax, just some Tylenol arthritis strength- which actually worked.  I've been able to ramp up my workouts from 30 mins of struggling to 45 mins of ka-pow for the past week.  Everything doesn't irritate me anymore. I can listen to something else besides classical music on the car radio without wanting to scream.  All the periphiral noise in the world doesn't make me irritated.  My head is screwed back on my body and my short term memory is returning and I can focus on one job 'til completion.  I don't have to read recipes over 15x to get them straight.  My family is glad I'm back, they are relieved.  I don't see their worried faces staring back at me for the first time in a year.  My son told me last night that he's delayed moving out because he's worried about me and that my married daughter was giving him crap about it until she visited in May, he told her then, that's how I am all the time now and she quit giving him crap.  The personality change was so gradual on femara, I didn't realize what was happening to me.  I thought the anxiety and depression were because I was preoccupied with cancer all the time.  The changes in me on aromasin came over me like an avalanche.  I struggled with feeling like I have to take them or I'm being irresponsible and stopping so I could retain my sanity.  Seriously.  I will see my Onc in a month to see where we go from here. I am feeling so good that I pushed my original appt back 2 weeks so my husband and I can take our 2 year (cancer) delayed 30th Anniversary trip.  I'll let you know what my Onc counsels me on, but at 55 I decided the SE's were stealing 90% of my life away, maybe more.  I wish I were one of the fortunate ones who are doing well on this.  I have a dear friend who is sailing along on Arimidex like a breeze and I envy her. I wish they could figure out why some of us are so negatively affected and some are not and be able to make adjustments for us.  God bless all of us real good.
  • shayne
    shayne Member Posts: 524
    edited July 2012

    phx - how long were you on it that you started having SEs?  I talked with my Onc yesterday, and she said me being 3 weeks on with no harsh SEs was a v good sign, but she said sometimes SEs can come on later as well.  Just curious when I can breathe a sigh of relief.  Ive had some minor SEs, but feel like if I was on my regular work out schedule, things like feeling fatigued would be remedied.....  I had to wait 6 weeks after internal rads before I can go back to my regular workout, one more week to go

  • hopefulhealing
    hopefulhealing Member Posts: 581
    edited July 2012

    Two weeks on Aromasin and thinking I am starting to feel it in my leg muscles.  Haven't slept since being on Tamoxifen so that is nothing new.  Mood affected by Tamoxifen as well so no big changes from how it was changed before.  Yesterday after walking about 1 mile I noticed tingling in my lower arm so wondering about the carpal tunnel stuff.

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

    SE, SE--not a fun thing.

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

    BTW--I probably asked this before but I'm not going to read all of this again and I apologize if I did, besides most of u won't remember anyway LOL

    Does anyone have really dry patches on u'r face and arms. I use Argon Oil and I never had a problem til lately so I changed to Elysee but the patches haven't chaned--I've never had skin problems--yea I'm such a beauty, but u know what I mean I hope. Just wondering. Thanks

  • hopefulhealing
    hopefulhealing Member Posts: 581
    edited July 2012

    Not dry patches but bright red on my neck off and on

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

    Thanks hopeful--hmmm that sounds odd too, Another words our skin has been sensitive to this maybe????

  • phxsunshine
    phxsunshine Member Posts: 156
    edited July 2012

    I was on femara for 3 months and was doing pretty good, I thought.  The 4th month it went downhill fast.  Aromasin took only a few days for me to start feeling I was having an out of body experience.  I didn't sleep much from day 1 on it and by day 7 my family was afraid to leave me by myself and I was afraid to drive.  It's like I couldn't pay attention to reality, very, very weird.  I'm sure lack of sleep was a part of it but I felt like I was in an alternate state of being or something and it was getting worse by the hour.    camillegal, I've been taking "FlexNow" (Shea flex oil capsules) since I was on tamoxifen. My skin turned into tissue paper and would tear if I pulled a weed with no gloves, tried to open a tight jar lid, etc. My lips were cracking constantly. It is for joint issues, but my ND prescribed it for my dry skin and it has worked like a champ.  The cheapest place to buy it is direct from the manufacturer too, on their website:  http://www.powerofshea.com

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

    Phx thanks for the info really--my skin is horrible since I started this and this is a capsule u take orally-hmmm I should know this but I don't --I'll give oit a try. It's funny u mentioned lips cuz I always look like I'm dehydrated my lips are so craked--I use what the hospital gave me???? it helps.

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

    Kay are u completely off anything now--or will something else be given to u?

  • phxsunshine
    phxsunshine Member Posts: 156
    edited July 2012

    kayb - last night was the first night I slept pretty well.  On the aromasin I woke up with an electric jolt every hour and would try to go back to sleep.  Didn't matter how tired I was, I'd close my eyes and there was a whooshing in my head that just wouldn't let me sleep.  I took a nap when I hit a wall, but the last few days I was on aromasin, I couldn't nap either, that whooshing again. Last night and today, I feel it really letting go.  During the 2 weeks I was off femara that happened too.  It let go and I felt a good tired again.  2 days ago it seemed like I was having a day long hot flash, that lasted most of 2 days, but now it seems to be gone. It's Phoenix and it's hot, but it was ridiculous, sweating all day, I felt the heat radiating from my core. I hope your heat goes away soon and stays gone.

    camillegal, my ND tells me that healing that comes from within is better than anything you can slather on top of your skin. That makes sense to me. Helping my body repair itself is my goal and she helps me figure that out pretty well.  Not everything she suggests works, but some of it works fantastic.

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

    Oh phx that'sthe idea of aromatherapy I slather so I get the aroma and just sit and meditate so it is from within just fragrance areound me for relaxation. I lay back and close my eyes and imagine a healthy body and I take deep breaths so I can relax better.  It's just my choice for that--it certainly isn't a proven method, but it releases stress for me and we all know what stress can do. That's what I meant.

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

    Well Kay thats' a good thing then not to be on any drug==but that electric jolt is a new one--what causes that--OMG sounds horrible.

    But u'r right so many get thru these meds easier and I'm glad for them and some  (like us) have such a goofy time with them and u wonder what else is this doing to my body. And it's bearable so I keep on taking it--bit if I had that jolt I wouldn't like that one. U 2 are amazing.

  • shayne
    shayne Member Posts: 524
    edited July 2012

    kayb - whatever time you did spend on them, will count towards protection they say.  My naturopath said there are a lot of other ways to keep estrogen down in the body through diet,exercise, supplements.....It might be worth exploring that avenue.  Im working with her, as well as my MO to get maximum benefits.  

  • TKSit
    TKSit Member Posts: 33
    edited July 2012

    Remind me what DIM is?

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

    U ladies are wondrous.

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

    OK I started takin my aromasin later in the day and for a small while I slept all night---Don't know if it was in my mind to or just happened, but now my sleep has gone back to before. I'm waking up (wide awake) around 2am and up til about 5, or 6am---then I get super tired in the morning and have to take a 2 hr nap. I stay up all day, but don't do much this weather is unbearable to me and all around me, and if it looks like rain we're all scared LOL---so going out is limited--As soon as u go out sweating comes immediately and uhg anyway, Then I get crabby, well worse than usual, and altho I realy don't mind staying in alot it is actually getting to me--I go out to see the Dr. or driven to stay in the hospital lately. No fun.

    Well I am seeing one of my Drs. Mon. so maybe I can complain to her.

    Thanks for letting me rant--at least I have TV. 

  • ohio4me
    ohio4me Member Posts: 323
    edited July 2012

    camillegal - have you tried taking anything to sleep? I find 1-2 Bendryl quite helpful when needed. Non-habit forming but not something I'll take later than 10 PM because I need to sleep it off or I wake groggy.

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

    Hi Ohio oh yes my Dr. give me sleeping "aids" LOL but I wake up anyway. Right now I'm so tired but if I go to sleep now for sure I'll be up--so I'm trying to stay up as long as I can then take my pills I try different things--I'm so useless sometimes, but at least I'm here to complain and I do that well. LOL BTW the benadryl in the store just doesn't do it for me, but I loved it in my veins--that used to knock me out.-Thanks for the thought tho.

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

    OK it's past 10:30PM and I just took my meds for tonite--so let;s see how it oes.

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.