Scared - AROMASIN®/Exemestane - Advice please

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globalgal19
globalgal19 Member Posts: 62
edited November 2016 in Hormonal Therapy - Before, During, and After

Hello, I'm new to the board as I've moved from CA to NC and am having some issues with Hormonal Therapy and not sure where to turn as I have not yet connected to a local support group.  I am Stage 2, DCIS and IDC. BRCA 1 and 2 negative, Estrogen and Progestron positive. HER neg - Nodes clear, do not need radiation or chemo.  Mastectomy on 5/29/13.

However, I started on a generic of Femara on July 3. First week no problems. Second week nausea 2x, drop in BP x2 but nothing further.  Week 3 hot flashes (or should I say "lingers") but the worst part was suddenly I could NOT fall asleep. I've had sleep problems for years but have always been able to fall asleep.  New local medical oncologist was away but spoke to nurse navigator who said to stop meds and she would speak to doc on his return.

Still not sleeping well and still having the hot lingers.  Emotionally sinking, not sure if it is due to meds or to lack of sleep.

Doc said I should begin AROMASIN® (Exemestane) on Monday and I read about the side effects and I am afraid to take that pill.  I have a 7% chance of recurrence and understand taking the pill will cut it by half.  

My questions:

At what point does one consider NOT taking the med? 

I know that not everyone choses to take this, is there a percentage point at which one doesn't need it?  

Do most people have side effects or do some sail thru with no problems?

Seeking answers and reassurance. 

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited August 2013

    I understand the fear but here is my expereince...5 years ago started on femara, complained of side effect of leg pains, switched to aromasin, later turned out the leg pains were from the dang stupid statin zocor and not the femara

    stayed on the aromasin, no side effects however I do believe it is partly as I hang out in a gym 4 times a week, do tons of stretches and stuff

    I will end my 5 years in Dec, feeling much better and safer that the dang DCIS is not there AND that I have done all to prevent the dang stuff returning!

    I say take it but do some serious excercise if you can.  I hit the big time in that I have a PT who is working on a PHD in physical therapy with a specialty in cancer survivors!  If you do not belong to a gym....join one or the YMCAs have been offering a free 12 membership to cancer survivors

    note...you are a survivor!  My PT has put together an excercise program that the Cancer Institute in NJ will be offering the same as they offer oncology and radiation!

    take the dang pill but then....MOVE it!

    now good luck and if the doc says take it....do it!

    if you happen to live in NJ, let me know and I will give you the info on my dear Tim!

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited August 2013

    oops, sorry as I see you live far from me but do find the best trainer you can to help you!

    and take the dang pill♥

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  • globalgal19
    globalgal19 Member Posts: 62
    edited August 2013

    Thank you so very much!  I feel better just hearing from someone.  Don't feel quite so alone.  

    Will see if there is a Y in the area.  I didn't know that. I do have a back issue but will see about how to get moving.  So very grateful for your advice and I am happy you are close to the end of that HT road!

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited August 2013

    the Y's will be free but I do remember my BS saying when I said I wanted to join a gym after all the other stuff...she said great, too many woman sit in a corner and get stiff!  so look around

    ok, so if I skip the gym, I sure can tell

    good luck and consider swimming if your back is bum?  mine is too but my recent stretching addiction has helped hugely

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  • globalgal19
    globalgal19 Member Posts: 62
    edited August 2013

    Thanks Proudofspin.  I hope I hear from others as well.  

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  • RMlulu
    RMlulu Member Posts: 1,989
    edited August 2013

    Hi Globalgal -



    Understand...did tx in CA and now in TX...so security is not there yet.



    My MO gave me a month break after I finished active tx to begin HT.

    MO said to call if any issues with HT...I filled my RX for Aromasin and waited the full month to recover from PTSD of the past 6 months. Got my body mind and spirit ready and gluped down my tiny white pill. Very minimal SEs if any :) use a pill box.

    I too am active at a gym walking lifting weights dancing tai chi yoga ...pound those bones...getting my steps in. MO said pounding bones to build and protect...no swim no elliptical ...physical impact

    Livestrong has a YMCA program for cancer patients and families to help promote good health. You may check out to see if they have a Y program near you.



    In CA my cancer center offered 2 yrs of exercise and other classes for patients... Maybe your center will too.



    Some people react to the fillers in generic so may ask for non generic...



    Really Aromasin has been a non event for me.

    Best Wishes for minimal SEs in HT land:)

    Cindy

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited August 2013

    Most people do NOT have problems. It is only natural that the ones who do are the ones who are posting about it, the rest are just out living their lives. I did 5 years of Arimidex without any big issues, but if I would have had problems with it, I would have surely tried another Al, as you are doing.

    Definitely exercise...helps alot with any SEs, moods, reduces recurrence risk....everything. One thing you might want to do, is to ask for a sleeping pill to help you over the hump. I got a prescription after I was diagnosed because I could not sleep at all, and there is no way you can function if you aren't getting sleep. It was the smartest thing for me; I got some rest and therefore was able to cope better with everything. Best of luck!

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  • doxie
    doxie Member Posts: 1,455
    edited August 2013

    globalgal19,

    I second what everyone is saying here.  I switched from arimidex to aromasin because of eye SEs.  I had/have aches and pains from both and the same eye SEs, but everything is managed and tolerable.  I work out on my own, inside and out.  And make sure that I build in core strenghtening.  Sometimes core work takes care of back pain, depending on what the problem is.  It's cured mine.  It may help yours depending on what is causing your back problem.  

    If one AI doesn't work, then switch around until you find what is best for you.  Everyone has different risk levels they are confortable with.  There is no magic number.  Good luck.

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  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited August 2013

    Globalgal, welcome to my home state. I am different from you. I took Aromasin to TREAT my cancer not to prevent a recurrence. But I can offer you my perspective. My tumors shrank within 3 months of taking Aromasin. Woohoo! But I had to stop, sadly. The side effects were too great. Quality of life is important for EVERYONE. That's not something that can be measured with percentage points. I don't think a lot of women are told that they may not be able to handle the side effects. I was ashamed of myself at first. How dare I stop a medicine that is saving my life. But it wasn't a life. Lots of women have no major side effects. I hope you are one. But once you start taking it, if the side effects make you dread taking it, it's time to stop. One suggestion is to ease into taking it, half a dose every other day, then every day, then full dose. That helped me.
    You just went through major surgery and a cross country move. You don't have to rush into starting a preventive medicine. Give yourself time to heal and find your way back to happiness.



    You can always choose not to take anything as a preventive. I chose not to and even though my cancer returned I do not regret skipping it. I had almost 4 years without having to take any meds/worry about side effects.

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  • Redbird1
    Redbird1 Member Posts: 1
    edited August 2013

    Hope your fears re Aromasin are allayed. When I started it over a year ago I had headaches at first but they disappeared after two weeks. I already had knee pain from osteoarthritis and now it's somewhat worse but that could be from aging or my statin drug. I've never had any other joint or bone pain. My energy level is somewhat lower but that started with the radiation treatments. I've always had trouble falling asleep so whether the problem is exacerbated by Aromasin is questionable. Allopecia started 2-3 years earlier and although my hair is thinner now it's hard to attribute this problem to the drug.

    I work out at a GYMN 2-3 times a week, dance at least once a week and swim. Do give the drug a try as any initial side effects may well diminish as your body adjusts. This is an excellent anti neoplastic and taking it has reduced my anxiety about recurrence. Good luck!

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  • globalgal19
    globalgal19 Member Posts: 62
    edited August 2013

    TarheelMichelle Thank you SO much.  Eating breakfast and was going to take the first dose. Now will only talk half as per your suggestion.  I need to find a support group.  I live in Wake Forest but docs in Raleigh. If you are in the area and have suggestions please let me know.   Sending you a big HUG!

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  • pupmom
    pupmom Member Posts: 5,068
    edited August 2013

    Globalgal, this is just me, but I believe it is a mistake to alter your treatment protocol in any way without talking with your doctor first. Also, you do not know if you are going to have a bad experience on Aromasin. I've been on it for a year and a half and it has not been difficult for me.

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited August 2013

    Take it as directed. If you mess around with it, it will not work as it should. Most people do NOT have trouble.

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  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited August 2013

    Thanks for the hug, GlobalGal! Good idea to call your doc about your dosing regimen, as these wise ladies have said. I should have added that my dosing schedule of starting with a half dose, was suggested by my doctor. It wasn't something I did on my own. I ended up in the emergency room with side effects 3 days after starting Femara and my doctor believed it was too much of a shock to my system to start with a whole dose. That's why she recommended starting with a reduced dose with Aromasin.

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  • RMlulu
    RMlulu Member Posts: 1,989
    edited August 2013

    GloalGal - it's such a itty bitty tiny white pill I don't know how you can sneak up on it and cut it in half...

    I gulp mine down at lunchtime...got a pill box and added supplements natural Onc directed with my MOs blessing. Intergrated care. In pill box you can barely see Aromasin.



    With MOs blessing give yourself a month break...cross country move s so stressful plus all this...R&R helps the med go down and gives perspective.

    I'm highly sensitive to meds...and Aromasin has been a non event...very thankful :)



    Always confirm with you BC team

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  • globalgal19
    globalgal19 Member Posts: 62
    edited August 2013

    I am so grateful to hear from everyone - TRULY.  I promise to check with the doc TODAY and glad to hear not everyone has issues.

    This list is a godsend.  Eases the worry.

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  • lisa2012
    lisa2012 Member Posts: 652
    edited August 2013

    I am having the ashamed and scared feeling. 3 mos of Arimedex,9 mos of aromasin and ok during day but bad at night and terrible in the am for about 2 hours every day. I walk, bicycle, and go to Jazzercise. MO said let's try Femara. You can always go back to aromasin if its worse. I am wondering if I am exaggerating my se's. Maybe it is standard. Is it better the devil you know than the one you don't? I had several really bad nights but last night was ok and I don't feel terrible this morning. Help!

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  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited August 2013

    My friend's onc had her start with a pill every OTHER day for the first two weeks. He also gave her free samples---which was really nice I thought.

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  • RMlulu
    RMlulu Member Posts: 1,989
    edited August 2013

    Hi Lisa2012 - we are all so different...thus options for HT! MOs right try try try and find the one that works best for you. Try changing when you take...am noon pm.

    Sometimes we are over sensitive...wondering and fearing every ache and pain...it is only normal we've been through a beast of a journey. Some if this is just body maturing!

    Ask MO how long of a break you can have before starting a new HT...journal how you feel SEs as you go off ...and before you begin anew. Did you have any if these issues before BC? My mom said if you look for trouble you will find it.

    Some of the listed SEs I had before I went on AI...

    I pound my bones everyday...I consider myself fortunate to take Aromasin. My grandmother did not have AIs in her arsenal when she was battling BC...I'm fortunate :)



    Minimal SEs...this is a non event...and worth it to prevent recurrence and mets!



    Try try try until you find the one that is right for you!

    Cindy

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  • globalgal19
    globalgal19 Member Posts: 62
    edited August 2013

    THANK YOU ALL SO MUCH.   I did check with the nurse navigator and will begin the Aromasin this evening.  The idea of keeping a journal is a good one.  I plan to put that into practice re the SE and the med immediately.

    I know that I have a 7% chance of recurrence and taking the med reduces it by half.  Is there a % where one considers NOT taking the HT.

    Does "tx" stand for surgery?

    Again, thanks so much to all who have responded.  I am truly grateful.

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  • lisa2012
    lisa2012 Member Posts: 652
    edited August 2013

    I really wish the AIs were a non event for me. My sister had that experience. I am about to try my third one. Hope it is better.

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  • Trisha-Anne
    Trisha-Anne Member Posts: 2,112
    edited August 2013

    Global - I'm another one on Aromasin and not having any major issues.  I started on Arimidex which was hell, but Aromasin agrees with me.  I figure if I can take it without too many se's then even a 1% reduction in risk is worth it.

    And tx stands for treatment, sx surgery, mx mastectomy - you get it :-)

    Good luck

    Trish

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  • globalgal19
    globalgal19 Member Posts: 62
    edited August 2013

    @Trisha-Anne reading that is very encouraging!

    Again, THANKS SO VERY MUCH to all those who ahve responded.

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  • globalgal19
    globalgal19 Member Posts: 62
    edited March 2014

    Just reporting in. I started on the generic for Aromasin and have had NO problems.  Just under 4.5 years to go.

    Having reconstruction and reduction next Wednesday.  Life is moving along.

    Again, thanks for all the encouragement.  Really should have reported in long ago.

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  • adina65
    adina65 Member Posts: 24
    edited November 2016

    Just off of Letrozole for one week now and it's either in my mind or physical ,but I do feel better except I still have those darn hot flashes. I was only on it for 8 months and just starting Exemestrone sometime this week. I'm so grateful to this forum. I'm going to ease into it as suggested and try for the 5 year mark. I'm very active on a daily basis and wear a fitbit, also gym and lots of dog walking. Everyone that has posted on this forum is a godsend to me and each other. Keep up the incredible posts if time.

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