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Topic: Life on aromasin

Forum: Hormonal Therapy - Before, During, and After —

Hormonal therapy medicines can be used to lower the risk of early-stage hormone-receptor-positive breast cancer from coming back, shrink or slow the growth of advanced-stage or metastatic hormone-receptor-positive breast cancers, and lower the risk of developing breast cancer in certain women who are at high risk. They work by lowering the amount of estrogen in the body or by blocking the effect of estrogen on breast cancer cells.

There are several hormonal therapy medicines, including, tamoxifen (Nolvadex, Soltamox), Arimidex (anastrozole), Aromasin (exemestane), and Femara (letrozole).

Hormonal therapy is usually prescribed for multiple years. Common side effects include hot flashes, joint pain, fatigue, and bone thinning.

Note: This is a safe place to share YOUR experience, not to be influenced or influence others. Please contact your doctor about any questions or concerns you may have if you are currently taking hormonal therapy.

Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

Posted on: Mar 6, 2012 08:31PM - edited Nov 15, 2017 01:03PM by Moderators

rayofsun wrote:

Just starting aromasin after being on tamoxifen for 1.5 years. I am also on effexor so did not experience hot flashes with tamoxifen and my other side effects were mild. Am curious how others have done on Aromasin.

Thanks ray

Edited by Mods to add content from our main Breastcancer.org site on Aromasin: Benefits, Side Effects and More

brca neg.SNB 10/09, bilateral mastectomy 4/10. DIEP , ooph and tubes removed 1/5.11.. started breast cancer vaccine study for her2 positive at hopkins on feb 2011. Dx 9/30/2009, IDC, 6cm+, Stage IIIC, Grade 2, 1/25 nodes, ER+/PR-, HER2+
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Jun 21, 2012 06:03PM camillegal wrote:

Donna----hahahahaha me too.

Dx 2007, Stage IV, 24/38 nodes, HER2+
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Jun 21, 2012 06:20PM dogsandjogs wrote:

Well.since I'm my seventies it is tempting to blame my aches and pains on old age. But---aches and pains come on gradually and the Aromasin pains came on suddenly - after 2 months I was suddenly walking like I was 90, couldn't even jog, awful pain in my toes and fingers. Fingers seizing up so I couldn't straighten them,  terrible shoulder pain which kept me awake at night, more stress incontinence, more episodes of Afibs, etc etc.  The depression was also awful, I don't even want to mention how horrible my thougts were - all day long.

Now the shoulder, finger and toe pains are gone and the others are much less. The depression has lifted, the Afibs have stabilized. My cardiologist's NP said I did the right thing by stopping the drug.

Dx 11/1982, IDC, <1cm, Stage I, Grade 2, 0/17 nodes Surgery 11/17/1982 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Nipple reconstruction Dx 11/15/2010, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+ Surgery 2/11/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel
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Jun 21, 2012 06:34PM camillegal wrote:

Dogs andjogs---I'm in my late 60's so I know exactly what u mean all of a sudden it happened--altho thankfully  I never had depression, but lots of pain and before all this started I worked full time alot on my feet very busy place and I figured I'd go back to work after --jokes on me- never could go back and my body aged tremendously fast. LOL

Dx 2007, Stage IV, 24/38 nodes, HER2+
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Jun 21, 2012 06:38PM - edited Jun 21, 2012 10:25PM by mybee333

The depression, when I have it, which is most mornings, is awful.  I can feel it as something separate from myself.  Like a big knot of self-pity and anger in my chest.  It almost feels like it is not a part of me. I'm so irritable, and sometimes, just plain mean.  Sometimes by evening, i am lately starting to heal and experience feelings of joy.  The mood swings are unreal. I know for me, the sleeplessness really conrtibutes to the depression and negative obsessional thinking. Cami - headachey and tired are given in the am, and then it subsides, once I get moving. 

However.....I stick with this drug because I know I need an AI.  I am only 54 and my cancer was highly estrogen positive. Good and bad.  I am not too achey if I keep moving, which is a blessing.  Gardening has turned into the greatest blessing.

Don't wait for the storm to pass, learn to dance in the rain. ~ UMX w/ silicone implant reconstruction. Multifocal -IDC, DCIS, Pagets. Dx 4/6/2011, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR-, HER2-
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Jun 21, 2012 06:58PM camillegal wrote:

Mybee I'm glad u did fine gardening helpfl--I wish I had something I really liked--I am learning the computer a little so that's something never had one before----I think too alot is from not sleeping well, I don't know I do get sad but not depression ---dow or will we ever have any answers for all this mess. I know how I feel and it's certainly not good, but how do we explain it to others, so mybee don't u always say Fine when asked. I want to scream don't ask leave me alone--but I don't. I think u'r still at an age of estrogen stuff going on so that could contribute to this I don't know. And again me too my Dr. did ask me if I wanted to change and I said isn;t that why u put me on this cuz it's the best for me--Yes--so I'll stick as long as I can too.

Dx 2007, Stage IV, 24/38 nodes, HER2+
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Jun 21, 2012 07:17PM - edited Jun 21, 2012 07:19PM by donnajrn

Well ladies, looks like a lot of us are in the same boat, I am in my mid 60's..or shall I say the first of the boomers!  Off aromasin now for 2 weeks, and yes, still have some stiffness...but nothing like before....I was thinking is this medicine worth it??  Glad my MO said going back to tamoxifen was just fine.  Think the biggest problem was the shoulder pain..........amazing how a little pain in the shoulder prevents sleeping well, cannot turn without pain, unable to get out of bed............what a bummer that was.

Donna

Dx 4/1/2008, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Jun 21, 2012 08:43PM camillegal wrote:

Donna, what is this shoulder thing I have it too--it stiffins and hurts alot I can't reach with it and it's on the oppoite side of where all the cancer was and a few of us have it  I thought it was just me (again).

Dx 2007, Stage IV, 24/38 nodes, HER2+
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Jun 21, 2012 09:39PM dogsandjogs wrote:

My shoulder pain was on the same side as the lumpectomy.  It would radiate from the shoulder down the arm and keep me awake. I don't do well on strong pain killers so took Tylenol which really didn't help much. For some reason it hurt mostly at night.

Dx 11/1982, IDC, <1cm, Stage I, Grade 2, 0/17 nodes Surgery 11/17/1982 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Nipple reconstruction Dx 11/15/2010, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+ Surgery 2/11/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel
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Jun 21, 2012 10:30PM mybee333 wrote:

Radiating pain is a problem. A big problem .  Good luck.

I don't always say fine. Sometimes i say okay. Sometimes more.  Doesn't always go as well but I try to be honest.  Wondering if that is socially appropriate...........it is working for me.

Don't wait for the storm to pass, learn to dance in the rain. ~ UMX w/ silicone implant reconstruction. Multifocal -IDC, DCIS, Pagets. Dx 4/6/2011, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR-, HER2-
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Jun 21, 2012 11:54PM camillegal wrote:

OK I took my night pills and see what happens, if I wake up I'll check out this post LOL

Dx 2007, Stage IV, 24/38 nodes, HER2+
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Jun 22, 2012 12:10AM camillegal wrote:

me too Kayb---but I'll check anyway if I'm awake GRRRRRRR

Dx 2007, Stage IV, 24/38 nodes, HER2+
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Jun 22, 2012 05:18AM camillegal wrote:

I checked I'm glad u guys got to sleep--I was in the chat room til 2AM woke upat 3---fell back to sleep now it 5am--I'm awake for now --no doubt will be napping on and off all day --Dang---We're dog sitting for all of next week starting last night--beautiful Lab so friendly, but I have a cat who's so afraid--my dgtr promised before we moved in together so my grandson had a bad dream came in here my cat's all scared so really that's how my niht was. Now this morning I'm crabby so I thought of u 2 hahaha. I'm not insulting u I just know u know how I feelI told u I got out of the hospital Monday nite--I was there almost a week (not any cancer stuff) well in a way SE stuff that left me depleated of electrolytes so I'm still wobbly but much betterso I'm double crabby I feel weak still and I need to take a shower today and my dgtr has to stand guard on me. I'm older but my body  so much older the last few years I'm really venting this morning GRRRR is right. And so my day starts.

Dx 2007, Stage IV, 24/38 nodes, HER2+
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Jun 22, 2012 09:17AM ginger_mea wrote:

I take it first thing in the a.m. and it doesn't make me lethargic or sleepy.

Happy Friday!!!

Ginger

Dx 3/28/2011, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2+
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Jun 22, 2012 10:31AM donnajrn wrote:

I know several people who are on AI's and all have different responses.......very interesting.....I wasn't happy with tamoxifen but that is so much better than aromasin for me.  I have a friend on femara..no problem, a friend on Arimidex, no problem.........another friend tried arimidex, and the pain was intolerable..and she stopped it with the approval of her docs.  This is what is so great about this web site..........1. you find you are not alone, 2. you meet such wonderful sisters here, 3.sometimes you find a method to deal with the issues you have.  4. no better support system anywhere.

Donna

Dx 4/1/2008, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Jun 22, 2012 10:58AM kira1234 wrote:

Donna I agree with you the best support here. My Dr's only concern is I keep taking something. He had suggested I go off Femara for quite a while, but I just kept thinking at least I know what to expect for it. Unfortunately getting eczema all over my body kind of took the decision out of my hands. So far the Aromasin has been kind, but then I'm only 2 weeks into it so will see wha the future is.

Dx 6/2010, ILC, Left, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 7/7/2010 Lumpectomy: Left; Lymph node removal: Left, Right, Sentinel Radiation Therapy 8/2/2010 Hormonal Therapy 10/4/2010 Aromasin (exemestane) Dx 2/2017, ILC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR-, HER2- Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right Hormonal Therapy Arimidex (anastrozole)
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Jun 22, 2012 12:16PM ptdreamers wrote:

camillelegal, i take it right after dinner which is generally five or six hours before bed. So far that is working well for me. I also take melatonin 3 mg about an hour before bed. I awaken two or three times to us the bathroom but am able to get back to sleep. Seems like we just have to work out what works best.

ptdreamers, “Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. . Sail away. Catch the trade winds in your sails. Explore. Dream. Discover.” Dx 8/26/2011, IDC, 1cm, Stage I, Grade 2, 0/5 nodes, ER+/PR+, HER2-
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Jun 22, 2012 03:53PM camillegal wrote:

KayB I so glad u got a good nights sleep--yes I am wobbly but haven't fallen down (I couldn't resist, sorry)

Ptdreamer I keep on forgetting to try it later it's in with my morning meds--I have to get it changed.

I did take a shower today first time since the hospital but my dgtr stayed in the bathroom and helped some--so I felt easier with it. and I am so tired and slept, I try not to so I sleep better at night, but I can't keep my eyes open. Oh well Tomorrow I start my Aro. later in the day

Dx 2007, Stage IV, 24/38 nodes, HER2+
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Jun 23, 2012 06:18AM camillegal wrote:

OK took my mornign pills and put my Arom. in the afternoon bunch--so let's see.

Dx 2007, Stage IV, 24/38 nodes, HER2+
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Jun 23, 2012 10:06AM fondak wrote:

I am wondering, have any of you improved after 6 weeks of taking aromasin? 

My dr told me to give it 6 weeks because a lot of women feel much better after that. 

I took it 3 wks and then was off 2 for surgery.  The 2nd week off, I felt great and after only a few days back on it the pain, fatigue and insomnia were back and have worsened.  I've been back on it for 3 weeks now.

Thanks

Dx 8/5/2011, IDC, 5cm, Stage IIIA, Grade 2, 9/9 nodes, ER+/PR+, HER2-
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Jun 23, 2012 10:10AM rgiuff wrote:

I've been on aromasin about 3 weeks now after finishing up tamoxifen in February and then taking over 3 months break from meds.  My sleep has been a problem for the past few years, going throught the menopausal transition.  Now it's a little worse.  The 1st week with this med, I had trouble falling asleep at all.  Now I can fall asleep, but I'm waking up wide awake after 2-4 hours and then have to take half an ambien just to get back to sleep for a few more hours.  I also drink an herbal tea that I got from Trader Joes called Well Rested.  I'm going to try just the tea tonight if I wake up too early to see how effective it is by itself.  I'm off tomorrow from work, so lack of sleep won't be such a problem.  My Onc's NP says I'm being kinder to myself if I just take the ambien or restoril regularly, but I don't think they are as effective that way, and like to use them for emergencies, so that they will work when I really need them to. I've tried the ambien extended release and that was horrible.  It worked the 1st few times, and I took it for a few nights, then the night I didn't take it, I was awake the entire night.  I never refilled that Rx.

Mybee, I can so relate to what you are going through.  I hate that early morning awakening so much, especially when it's too late to take anything because I have to get up for work in an hour or 2.  That is the time when I tend to lay there ruminating over things, even good events that happened and thinking negative thoughts about them.  Evening has always been my favorite time of the day.  Then I can have a beer or wine, which always gives me a nice buzz, and I just feel more hopeful in the evening.

The first week of aromasin, I had terrible aching feet, which was affecting how much walking I could do, and some pains shooting down my wrists, but now I just feel occasional mild aches in my wrists and hot flashes are more intense now, but only at certain times of the day, usually during sleep hours, especially early morning.  I'm also feeling a drier vaginal area, but have vaginal estrogen products that I use occasionally and they take care of it.

Kayb, you mentioned vanity, but don't feel bad about it.  I'm right there with you, probably even worse than you.  I lost about 8 pounds in the months since stopping tamoxifen, without really even trying.  With that same exercise and eating routine, I had difficulty the past year with extra lbs. piling on.  Now on aromasin, we'll see what happens.  And as far as being vain goes, I've decided that if I start having thinning hair around my face, or signs of more rapidly aging skin, I will probably stop the medication, especially if aches get worse and affect my activity.  With my diagnosis of Stage 1, I truly feel that I've done and am doing enough already, even without taking medication.

RoseG Dx 4/2008, IDC, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2- Dx 4/6/2008, IDC, Left, <1cm, Stage IB, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 5/20/2008 Lumpectomy: Left Radiation Therapy 8/20/2008 Breast
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Jun 23, 2012 10:33PM rayofsun wrote:

Hi everyone catching up on posts, very informative. I too have shoulder pain on one side. I did have an auto accident where I got rearended and pain went away for a bit in neck and shoulder and returned after starting aromasin begining of march. Are peoples shoulder pain one sided?
Now the last week or so I am getting severe hamstring pain and I even have trouble changing positions on bed at night. Very frustrating. I am thinking of calling my onco to go back to tamoxifen. I really had minimal troubles on it. Are many people on tamoxifen post menopausal after trying different AIs , I don't want to flip between many AIs.

Rayofsun

brca neg.SNB 10/09, bilateral mastectomy 4/10. DIEP , ooph and tubes removed 1/5.11.. started breast cancer vaccine study for her2 positive at hopkins on feb 2011. Dx 9/30/2009, IDC, 6cm+, Stage IIIC, Grade 2, 1/25 nodes, ER+/PR-, HER2+
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Jun 23, 2012 10:33PM camillegal wrote:

Day one of taking my med later in the day--no nap today but tired like mad.  I'r ready to fall asleep now, I'm afraid i's to early and I'll wake up in a few hrs. OH such decisions.

Dx 2007, Stage IV, 24/38 nodes, HER2+
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Jun 24, 2012 04:04AM donnajrn wrote:

Rayofsun, I, too, had horrible shoulder pain on the right side.  Made it extremely difficult to even turn at night...........or even get out of bed.  Really did not bother me much during the day....I also had bone and leg aches when I went to bed.  Walking after sitting for an extended period of time was also quite uncomfortable until I got the "kinks" out........for these reasons I met with my MO and she agreed I could stop the aromasin and go back to tamoxifen..........I have been so much happier........I also had noted that my blood pressure had been quite high for me while on aromasin......and now down to normal.............my MO assured me nothing would happen by switching back.........Good luck

Donna

Dx 4/1/2008, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Jun 24, 2012 06:55AM camillegal wrote:

Well I took it later in the da--I did sleep petty good but that was one night--we'll see. LOL

Dx 2007, Stage IV, 24/38 nodes, HER2+
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Jun 24, 2012 11:41AM dogsandjogs wrote:

I get up several times a night to urinate. This was happening before the cancer diagnosis, but after taking Aromasin the urge got worse. This is not listed as an SE, but may be - who knows?

I try to limit tea drinking about 6 p.m. which helps somewhat--

Dx 11/1982, IDC, <1cm, Stage I, Grade 2, 0/17 nodes Surgery 11/17/1982 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Nipple reconstruction Dx 11/15/2010, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+ Surgery 2/11/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel
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Jun 24, 2012 11:46AM camillegal wrote:

Hmmm I wonder now--when I have to go now it's urgentnot like before---maybe it does have something to do with it --Oh again who knows.
Dx 2007, Stage IV, 24/38 nodes, HER2+
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Jun 24, 2012 12:10PM kira1234 wrote:

Oh my how I so relate to the bathroom thing. I have really noticed this, and never realised it might be a SE. Another thing I notice is I get way more cramps in my legs. Someone on another thread told me to drink Tonic water, and it had been a life saver for me. I was off all the drugs for a couple of months and had forgotten all about this SE, and woke up last night with one really bad leg cramp. I will be taking my daily drink from now on.

Dx 6/2010, ILC, Left, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 7/7/2010 Lumpectomy: Left; Lymph node removal: Left, Right, Sentinel Radiation Therapy 8/2/2010 Hormonal Therapy 10/4/2010 Aromasin (exemestane) Dx 2/2017, ILC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR-, HER2- Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right Hormonal Therapy Arimidex (anastrozole)
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Jun 24, 2012 12:20PM ptdreamers wrote:

I think the bathroom thing is the lack of estrogen. I was and am getting up every two hours like clockwork. This has been going on for years long before I started aromasin.

ptdreamers, “Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. . Sail away. Catch the trade winds in your sails. Explore. Dream. Discover.” Dx 8/26/2011, IDC, 1cm, Stage I, Grade 2, 0/5 nodes, ER+/PR+, HER2-
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Jun 24, 2012 01:21PM mybee333 wrote:

Funny you mention the freq. urination....I feel like I have to go every 2 hrs. or so.  Makes long car rides, yard work, shopping trips, fun.  Yrs. ago I used to have interstitial cystitis; it can give you a chronic sense that you have to 'go'.  It went way following pregnancy and I just thought maybe it was coming back.  Not sure what is going on.  It is a recent problem.  Past two months or so, about as long as I have been taking Aromasin daily.

Don't wait for the storm to pass, learn to dance in the rain. ~ UMX w/ silicone implant reconstruction. Multifocal -IDC, DCIS, Pagets. Dx 4/6/2011, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR-, HER2-
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Jun 24, 2012 06:09PM dogsandjogs wrote:

The worst thing, if I don't go immediately when I feel the urge it is too late (if you know what I mean) so I have to be really vigilant when out in public. --

Dx 11/1982, IDC, <1cm, Stage I, Grade 2, 0/17 nodes Surgery 11/17/1982 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Nipple reconstruction Dx 11/15/2010, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+ Surgery 2/11/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel

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