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Life on aromasin

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Comments

  • Warrior_Woman
    Warrior_Woman Member Posts: 819
    edited April 2016

    Thanks Lago - I've been hearing the term "dread shed". 10 days of Rogaine and so far hair loss remains steady. Fingers crossed. I see the dermatologist in another week.

  • feelingfeline
    feelingfeline Member Posts: 5,145
    edited April 2016

    Heart

  • Petula
    Petula Member Posts: 4
    edited April 2016

    Hi Ladies,

    I just started on Aromasin 10 days ago and have the worst hip pain. I can tolerate the other joint and bone pain but the hip pain is significant. Walking does not help. Any advice?

    Thank you.


  • Molly50
    Molly50 Member Posts: 3,008
    edited April 2016

    Hi Petula, have you tried Claritin? It does help some people with joint pain.

  • lago
    lago Member Posts: 11,653
    edited May 2016

    I am DONE! My MO feels given the issues I am having and there are still no definitive results that an additional 5 years is beneficial she feels I should stop. I think the fact that I came in with my foot in a boot due to a stress fraction in my foot really helped her decide. She said I shouldn't be getting a stress fraction in my foot when on Prolia. She now wants me to visit with the Rheumatologist again to address this. Can't get an appointment till mid August… and I am not a new patient! What!!! That's nuts. My Prolia is on hold till then but I'm due now.

    So I did my 5 years

  • Molly50
    Molly50 Member Posts: 3,008
    edited May 2016

    Congratulations, Lago

  • rmlulu
    rmlulu Member Posts: 1,501
    edited May 2016

    Lago - Congrats! Hope you get in soon and the stress fracture heals fast.

    I'm on Zometa infusions every 6 months due to bone loss...hoping June bone density shows no loss.

    Again, congrats no more AI!!!

  • morelandks
    morelandks Member Posts: 6
    edited May 2016

    That's great news Lago - well done!! I just started Aromasin two weeks ago, so you've handed off the baton. Take good care of that foot. . .

  • Kindergarten
    Kindergarten Member Posts: 2,883
    edited May 2016

    Hooray, Lago!! So happy for you!!!


  • feelingfeline
    feelingfeline Member Posts: 5,145
    edited May 2016

    CONGRATULATIONS Iago! We will miss your wisdom on here but you sure wont be missing the AI's Nerdy

    XXX

  • walley
    walley Member Posts: 195
    edited May 2016

    Congrats Lago!!!

  • doxie
    doxie Member Posts: 700
    edited May 2016

    lago,

    I'm guessing you have a mix of feelings. Please stop back in on this thread to let us know how you feel a few weeks, a month, and further out w/o aromasin.

    My MO indicated I should stop in a year, but was still leaving it up to me. Haven't discussed the BCI test yet.

  • morelandks
    morelandks Member Posts: 6
    edited May 2016

    Hi Doxie - if you don,t mind explaining, what is a BCI test? Kim

  • doxie
    doxie Member Posts: 700
    edited May 2016

    Sure, anything for a fellow Kansan. A native, but have not lived there for several decades.

    The BCI is the Breast Cancer Index. I don't know that much about it, but tissue is analyzed from your original tumor to determine if continuing AIs (and Tamoxifen?) past five years will be of benefit to you. It is new, so insurance coverage is not typical. Someone said that only 3% of us truly benefit from continuing beyond the 5 years. This doesn't mean that we are aren't still at risk of recurrences, just that AIs won't necessarily diminish the risk of a recurrence.

    I don't have time to find the appropriate links to sites for you. Have to go change a flat tire before going to work.

  • morelandks
    morelandks Member Posts: 6
    edited May 2016

    good luck with that tire! thanks for the info

  • april485
    april485 Member Posts: 1,983
    edited May 2016

    YAY!!!!! Although I am no longer taking exemestane (now taking letrozole) I still check this thread since I was here for 2.5 years! I am so happy for you lago!

  • lago
    lago Member Posts: 11,653
    edited May 2016

    I'll still stick around.

    Doxie I discussed the BCI test with my MO. She said it's not a recommended test. They have a lot of these tests now and she said not all of them are good. I don't have that many mixed feelings about this. I knew from day one my bones would be an issue. Told my MO that was one of my concerns when I 1st met her.

  • doxie
    doxie Member Posts: 700
    edited May 2016

    lago,

    I'm leaning towards quitting after 5 years. I've had two broken bones in the same foot since on AIs. One was a toe and I have no idea how I did it. The other was caused by bumping into furniture. It was cast iron though.My bone density has been going down, but I'm not yet at osteoporosis.

  • Stephmoen
    Stephmoen Member Posts: 184
    edited May 2016

    I am 31 on aromasin for 5 months I had a oopherectomy my worst symptims are joint pain insomnia and now I have tingling does anyone else have that?? It's my rights side of body im nervous about mets :( never ending I was talking xanax to sleep now my onc prescribed me ambien I just feel like a big mess

  • morelandks
    morelandks Member Posts: 6
    edited May 2016

    Hi Steph - I have neuropathy symptoms too (tingling, pins and needles, numbness in my fingers and toes)', so you're not crazy.  Mine started the day after my first Lupron injection (for ovarian shut down, to be sure the AI would be effective).  I also had neuropathy from chemo (Taxol) so we're not sure what is causing my current increase in symptoms.  You should bring it up with your MO.  Hang in there - we're all a big mess, with or without cancer!

  • feelingfeline
    feelingfeline Member Posts: 5,145
    edited May 2016

    Hi Steph lovely to see you but sorry to hear you are dealing with so many SE's. Oopherectomy is a big one and then you are getting AI's too - no wonder you are feeling hammered. Tingling could be a symptom of neuropathy (nerve ends dying) or the exact opposite - nerve endings trying to regenerate - remember you have had a lot of chemo too, the collateral damage from that can show up for years. It is never any harm to run it by your doctor or oncologist but try not to stress, far higher chance of it being a benign SE. Hope your beautiful family are thriving. XXX

  • Stephmoen
    Stephmoen Member Posts: 184
    edited May 2016

    Thank you wonderful ladies for responding! Some days I feel like I've been hit by a garbage truck I know my body went through hell this last year on top of everything I had sepsis too! Made an appt with dr tomorrow to discuss these newer side effects will keep you updated

  • Molly50
    Molly50 Member Posts: 3,008
    edited May 2016

    Steph, surgical menopause is hell by itself and with AI's ugh. I had to change to exemestane after 6 months on Anastrozole because my SE's were horrible. I hope your appointment goes well.

  • lago
    lago Member Posts: 11,653
    edited May 2016

    Stephmoen just to add I did switch to Exemestane (Aromasin) after 3 years on Anastrozole. I wish I had done it sooner. So much better. I was in so much pain I couldn't stand up straight by year 3. Didn't realize it was from the drug till I got off it. Everyone kept telling me I lost 1"-1.5" in height. Guess who is now back to their normal height once I made the switch.

    There are other drugs out there. Some of us do better on some and other not so much.

  • DoxieMomof3
    DoxieMomof3 Member Posts: 1
    edited May 2016

    Has anyone had issues with going through horrible "rage" episodes since going on Aromasin? I started it 2 weeks ago after being on Letrozle for just under 2 years (Doctor changed me to Aromasin because he said apparently Letrozle didn't "work" because I was diagnosed with a second breast cancer) and about 3 or 4 days after starting it I noticed that I am having a horrible time controlling my temper and it normally takes a lot to set me off!! My best friend even noticed that I am blowing my fuse a lot and for the littlest things. I am 3 weeks PFC and the only thing that has changed is my starting the Aromasin. So I am thinking that maybe it is some kind of hormonal thing from the Aromasin? Has anyone else noticed something like this? I stopped taking it today and I am going to call my doctor on Monday but I thought I would ask here 😃

    Thanks!!

  • zjrosenthal
    zjrosenthal Member Posts: 1,541
    edited May 2016

    I didn't have rage on either femara or aromasin but have a lot of crying jags over nothing! Love, Jean

  • dtad
    dtad Member Posts: 771
    edited May 2016

    Hi Doxie....yes it could be the Aromisin. These are powerful drugs that affect our hormone levels drastically. Talk to your doc about it. Hopefully you can find something to make you feel better mentally and physically. Good luck and keep us posted...

  • elainetherese
    elainetherese Member Posts: 1,635
    edited May 2016

    Doxie,

    Aromasin made me feel PMSsed,which was less about rage and more about being sad for no reason (like what Jean said). That's not surprising because Aromasin messes with our hormones, just as my monthly cycle used to. My doctor prescribed me Celexa, and now I feel "normal," whatever that means (LOL).

    Hope you feel better soon!

  • Molly50
    Molly50 Member Posts: 3,008
    edited May 2016

    So far for me exemestane is way better than anastrozole. I feel like myself again after 6 months of legs that felt like lead, exhaustion and foggy brain. Even my joints don't hurt as much so far. I admit I am only 4 weeks in but what a relief.

  • gypsyjo
    gypsyjo Member Posts: 112
    edited May 2016

    I'm following you here, Molly! I was on anastrozole for over a year finding myself with continual aching, stiffness, and joint pain. It took my beginning arthritis and magnified it by 8X. I took a 8 week break with my MO blessing for a month in Europe. He had me stop one month in advance. Four days after stopping I woke up feeling good - no aches and pains. In a few weeks I could walk more. By the time for my trip I was walking 8K to 10K steps a day. I would feel a little stiff and sore, but I could live my life again. I started on aromasin this week. I am hoping for lesser side effects. If not, my MO will change me to Taxomifen.

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