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Topic: Life on aromasin

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

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Mar 6, 2012 09:31PM - edited Nov 15, 2017 02:03PM 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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May 18, 2012 02:25AM stephN wrote:

fondak, I feel for you.  This is a time of tremendous change for you, finishing radiation and starting the new drug, and about to have your hyst/ooph.  I was in your shoes last fall.  I finished radiation at the very end of Oct, had my hyst/ooph in early Dec and started the meds the week before Christmas.  I don't think my body ever recovered from radiation before I had the fatigue of the surgery and then the fatigue of the drug compounded it.  I think you have to give your body time to recover from traumatic events, like radiation and surgery.  And then it's time to start slowly rebuilding your strength.  

This would be a case of do as I say not as I do.  I'm trying now to figure out how to add exercise to my routine because I hate it so much and I'm so tired all the time!

hipgranny, I switched from Femara to Aromasin and my doctor told me to take some time in between to let the drug clear from my system.  I got headaches for about a week while I was off the drug.  I think that it's the body making hormones that it wasn't making before and until your system stabilizes you might have headaches.  It's just a guess, but my headaches and migraines are really sensitive to hormonal shifts, so I think it's really likely.

DX 7/12/11 DCIS w/IDC microinvasion, Stage 1, Grade 3, 0/1 nodes, ER+/PR+
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May 18, 2012 03:53AM camillegal wrote:

I read thru this and don't remember if I saw my name already. ??? I've been on aromasin fir 1 year. I pretty much have constant arthritic pain truut my body,  mostly my legs and hips.diarrhea, fatigue and generl ickiness--I do have LE and neuropathy places so I really dn't know where one starts and one ends LOL

Dx 2007, Stage IV, 24/38 nodes, HER2+
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May 19, 2012 12:59AM fondak wrote:

stephN, Thanks so much for your post.  It is very encouraging to hear of someone else who went through the same steps within such a short time frame.  I believe I did have a bug of some sort earlier with all the pain and degree of fatigue I felt. I felt much better yesterday and today.  Still achy but nothing I could do things I needed too.

Now, I'm trying to get things caught up before surgery.  I've never been caught up so I can't blame that on everything going onSmile.  I guess I should say manageable! 

The doctor did say if I come in Monday morning and my white blood count is not up from when I finished the chemo, he will postpone the surgery. 

camillegal, you didn't remember seeing your name.....guess what I did.....I was reading my own post and thought, "Wow, this sounds just like me!"  It felt so strange when I realized it was me but it was good for a laugh! 

Oh my, what a week ~ but I am sure thankful for it!

Dx 8/5/2011, IDC, 5cm, Stage IIIA, Grade 2, 9/9 nodes, ER+/PR+, HER2-
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May 19, 2012 03:10AM hipgranny wrote:

Thanks. stephN,

My headaches are not as severe as they were earlier this week, so I'm hoping my body is getting used to a few more harmones in my system. 

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May 19, 2012 03:19AM hipgranny wrote:

I was on Aromasin for 5 years and I quit the drug about a month ago.  My joint pain, while I was on the drug, varied during the whole time--sometimes pretty severe. Mostly my joint pain was in my wrists and hips. I am still having minor joint pain in my wrists, but it is less now than it was while I was taking the drug. My biggest problem now is headaches.  I think that must be from a harmonal shift. I was so happy when my oncologist told me I could stop, that I forgot to ask if I would have any new issues with stopping. 

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May 19, 2012 12:49PM camillegal wrote:

Here I am again crying in my beer--(don't I wish) I wouldn't be crying then. Bit whhen I said fatigue I really meant it severely-LOL I do some excercisizing in the evening (not a lot) everything hurts so much. I feel like a freak and who else can understand this but u guys. I tell everyone I feel fine--thos I walk like I'm 90 yrs old--Actually when my dad was 90 he walked better so I don't know what age walk I'm around. I know a lot of people take these drugs without having so many SE, but wow I feel like I did when I was on Chemo most of the time. Why??? I know I'm no young chicken, but I feel like I'm next in line for the slaughterhouse. I forgot what my sister is on I think Femara--her Dr. has changed her a few times--she's Stage IV-bone mets and had no chemo or rads???? And she's doing OK for now--my niece is on Armidex doesn't feel great and my cousin on Tamox. doesn't feel so hot either--well they understand too, but we don't talk about it with anyone else cuz we sound like we're complaining, I guess we are. hahaha but I do tell them (from here) what others are saying and makes us all feel better.
Dx 2007, Stage IV, 24/38 nodes, HER2+
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May 20, 2012 04:16AM camillegal wrote:

OH kayb thank u I never thought of the time of day thing---I'll certainly try it. I put it with my night meds. hahaha all these pills to keep track of wears me out LOL Thanks again

Camille

Dx 2007, Stage IV, 24/38 nodes, HER2+
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May 20, 2012 02:44PM camillegal wrote:

kayb, I started last nite---and I'll let u know---we can talk ourselves into a lot of things. hahahahahaha Thanks again

Dx 2007, Stage IV, 24/38 nodes, HER2+
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May 20, 2012 08:21PM fondak wrote:

kayb  I found your thread about AM or PM.  I was glad to read the comments there.  I have been taking it at night and like you said I have never been able to nap during the day (except during my chemo days).  However, 3 days this week I have had long naps.  I sleep in late and then can't sleep at night.  I can't tell if it's because I am not getting good sleep at night or just fatique.  I've been waking up through the night and dreaming like crazy since I've been on it.

I have only been on aromasin 3 weeks.  I wouldn't have thought I would feel the side effects so soon. My knees hurt going upstairs, hands hurt a lot and after a long nap or getting up in the morning I move around like I'm 90. 

I have to stop taking it a few days as I'm having a hysterectomy/ooph in the morning.  When I start back I'm going to try to take it in the AM and see if good sleep will help.  I'm glad you mentioned that.  It wlll feel good to have something to try at least.

Thanks

Dx 8/5/2011, IDC, 5cm, Stage IIIA, Grade 2, 9/9 nodes, ER+/PR+, HER2-
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May 20, 2012 08:35PM Kindergarten wrote:

Hi, everyone, I am so glad that I came across this thread today. I was on aromosin for 6 1/2 years and my onc said that it was time to stop. My bone loss was getting more significant and there were some other issues as well. I also had a complete hysterectomy a few years ago, so my onc thought that my estrogen levels were almost nil. I just read here that some of the ladies that have stopped aromasin, are having headaches now. Well, my side effect has been anxiety and depression. I stopped in November. My new onc here in CA, thought it might be related to that Aromasin is steroidal in effect, and when you go off a steroid suddenly it can cause havoc. I did not wean myself off the Aromasin, but took my last pill and that was it. Has anyone else had this side effect from stopping aromasin?? Thanks for any input and I hope those dealing with headaches get relief soon. I have been put on 5mg of lexapro to see if that helps. Have a great evening, everyone!!!

Kathy Dx 11/17/2004, IDC, 2cm, Stage IIB, Grade 3, 1/28 nodes, ER+/PR+, HER2- Chemotherapy 12/4/2004 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 5/28/2005 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal Radiation Therapy 6/4/2005 Breast Dx IDC, 2cm, Stage IIB, Grade 3, 1/28 nodes, ER+/PR+, HER2-
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May 20, 2012 08:50PM camillegal wrote:

Kathy I hope u reread this thread---I ask really dumb questions, but don't judge me LOL what do u mean steroidel?  I get headaches now I think every ache and pain I have is from aromasin and I blame it, so I'm fine with that part. LOL Even when I don't take a nap, I'm awake during the night for about 2 hrs. but otherwise I'm so tired all the time.And now I think but steroids would make me feel good--Is that true.?

Dx 2007, Stage IV, 24/38 nodes, HER2+
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May 20, 2012 11:20PM MaryNY wrote:

Ray: Thanks for starting this thread.

I've completed two years on Tamoxifen and have now switched to Aromasin. I took my first dose this morning. I put on 25 pounds while on Tamoxifen. Should I expect even more weight gain on Aromasin?

I notice a couple of you experienced headaches after suddenly stopping Aromasin. That makes me wonder if I should have eased off Tamoxifen for a couple of days instead of just stopping Tamoxifen yesterday and immediately starting Aromasin today.

Mary ~~ lumpectomy 8/10/2009, Oncotype DX 18, Chemo 10/28/09--2/1/10 AC*4, CMF*4 Dx 5/19/2009, IDC, 1cm, Stage IIA, Grade 2, 2/6 nodes, ER+/PR+, HER2-
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May 20, 2012 11:47PM camillegal wrote:

MaryNY maybe since u stopped one and went on another they'll be SE from stopping????? And I'm as bi as a house (well 2 bedroom) and I can't lose a pound and I ave no appetite and hardly eat so I have no idea what's oing on with weight stuff.

Dx 2007, Stage IV, 24/38 nodes, HER2+
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May 21, 2012 12:22AM fondak wrote:

I will definitely do that.  Thanks. 

Dx 8/5/2011, IDC, 5cm, Stage IIIA, Grade 2, 9/9 nodes, ER+/PR+, HER2-
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May 21, 2012 10:27AM dogsandjogs wrote:

Hi Kathy: Before I stopped the Aromasin  completely, I tried to take the pill every other day for a while, then every third day. When it made no difference to the SEs I stopped completely.

So maybe that is why  I didn't get the headaches!  I think the docs should warn you to stop it gradually.

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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May 21, 2012 10:35AM dogsandjogs wrote:

I did not gain pounds on Aromasin, but lost muscle tone and acquired a spare tire around my middle (for the first time ever) this happened despite all my normal exercising.

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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May 21, 2012 10:35AM bubbe wrote:

I take Aromasin at night because when I initially started taking it (about 7 weeks ago) I suffered from "brain fog."  I felt I was losing was mind and told my husband he now knew what to expect if I should become demented.  By switching to evening dosing, I felt that any side effects would occur while I was sleeping, so who cares?

Dx 12/2011, IDC, <1cm, Stage 0, 0/3 nodes, ER+/PR+, HER2-
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May 21, 2012 10:59AM Kindergarten wrote:

Hi, Camillegal, no question is ever dumb, thanks for asking, because I had to remember what my onc said about aromasin being steroidal in effect. He said that aromasin mimics a steroid, in that aromasin may give you the same effects as a steroid does. He gave an example of that your humger may increase but that was it. But just talking with some people who have taken steroids, they say that when you go off of them, the side effects are anxiety and sometimes depression. So I have been wondering why I am experiencing these side effects after going off of aromasin. I am feeling better. I am sure aromasin stays in your system for quite awhile. I was on it for almost 7 years. I wish you well on this drug. It has kept the cancer away for me, which is a wonderful side effect. Have a great day!!!!Smile
Kathy Dx 11/17/2004, IDC, 2cm, Stage IIB, Grade 3, 1/28 nodes, ER+/PR+, HER2- Chemotherapy 12/4/2004 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 5/28/2005 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal Radiation Therapy 6/4/2005 Breast Dx IDC, 2cm, Stage IIB, Grade 3, 1/28 nodes, ER+/PR+, HER2-
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May 21, 2012 11:27AM Kindergarten wrote:

Dear Dogs and Jogs, How are you?? Good point about stopping any of the aromatose inhibitors gradually. I did not and that is why I am thinking I have had a difficult time, but I am feeling better, thanks!!!

Kathy Dx 11/17/2004, IDC, 2cm, Stage IIB, Grade 3, 1/28 nodes, ER+/PR+, HER2- Chemotherapy 12/4/2004 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 5/28/2005 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal Radiation Therapy 6/4/2005 Breast Dx IDC, 2cm, Stage IIB, Grade 3, 1/28 nodes, ER+/PR+, HER2-
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May 21, 2012 11:31AM dogsandjogs wrote:

Kayb:  No, I don't know really, but when you hit menopause you seem to get that roll around your waist and get flabbier overall.  So this is just menopause re-visited (at least for me)

PS I looked up Aromasin on the Internet once and found all this info. for weight lifters!  It seems they take it too--

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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May 21, 2012 11:31AM dogsandjogs wrote:

Kathy, just sent you an e-mail

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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May 21, 2012 12:28PM camillegal wrote:

Thanks Kinderarten for answering me--Geeze there's more se from these meds than chemo---Personally as I have said many times---I think everyone (including Drs,) are a little befuddled (funny word) cuz now people are surviving and on meds longer and more SE are showing up that we are getting familiar with than the drug companies.

Dx 2007, Stage IV, 24/38 nodes, HER2+
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May 22, 2012 04:06AM camillegal wrote:

Kaybe it's only been a couple of days since I've been taking my aromasin at night--so far well it's 3AM and here I am, maybe it's not long enough--so I'll continue anyway.  Thanks

Dx 2007, Stage IV, 24/38 nodes, HER2+
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May 22, 2012 09:00AM mybee333 wrote:

Speaking of sleep, I took mine Aromasin last night at 11,  got up at 12 as i hadn't yet fallen asleep, drank a glass of red wine to help relax me (anxious about kids), went back to bed and fell asleep at 1:30 and then woke up before my alarm, fairly damp at 5:30.  Four hours of sleep.  At the nurse's suggestio I am keeping a daily log to show the MO the difficulties I am having.

btw - my weight gain has settled with Aromasin.  I felt like I was gaining rapidly and retaining water much more with Armidex.

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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May 22, 2012 09:22PM lulubee wrote:

Is this the "official" Aromasin thread?  I just started taking it yesterday, with Afinitor.  Before that I was on Femara for 15 months, then Faslodex for a far-too-short four months.  Hope I get a longer run than that on Afinitor + Aromasin (and Xgeva).

I'm so glad to hear a few of you saying you haven't gained as much on Aromasin.  That is truly encouraging right now. Femara packed a fast 20 on me, and I don't want any more of that! 

8/07: ILC & IDC, multi-focal/multicentric, ER+PR+ Her2-, no nodes. BMX+lat flap. 10/10: STAGE IV ILC bones, ovary & pericardium. 12/13 progression: bones & bile duct. 12/16 progression: bones & pericardium. 8/18 progression: bones. Hormonal Therapy 11/5/2010 Femara (letrozole) Surgery 11/5/2010 Prophylactic ovary removal Hormonal Therapy 1/31/2012 Faslodex (fulvestrant) Hormonal Therapy 5/14/2012 Aromasin (exemestane) Targeted Therapy 5/14/2012 Afinitor (everolimus) Chemotherapy 9/30/2013 Xeloda (capecitabine) Chemotherapy 1/25/2017 Taxol (paclitaxel) Chemotherapy 8/26/2018 Halaven (eribulin) Targeted Therapy 3/12/2019 Verzenio Hormonal Therapy 3/12/2019 Faslodex (fulvestrant) Targeted Therapy 9/23/2020 Piqray (alpelisib)
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May 22, 2012 10:38PM mybee333 wrote:

I would like to add that despite my lack of sleep, had a great day, felt peaceful and was fairly productive.  Not bad.

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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May 22, 2012 11:18PM - edited May 22, 2012 11:19PM by MaryNY

Hi Lulubee: I'm just one day ahead of you. I started taking Aromasin on Sunday. This is after two years on Tamoxifen, where side effects weren't too bad except for hot flashes and weight gain (25 pounds). It would be nice if it was easier to shed weight with Aromasin.

 I've been following the advice in the last couple of pages and taking the pill in the evening. With Tamoxifen I took a split dose  -- 10mg in the morning and 10mg in the evening -- except I often forgot. Having to take just one pill now seems much simpler.

Mary ~~ lumpectomy 8/10/2009, Oncotype DX 18, Chemo 10/28/09--2/1/10 AC*4, CMF*4 Dx 5/19/2009, IDC, 1cm, Stage IIA, Grade 2, 2/6 nodes, ER+/PR+, HER2-
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May 23, 2012 02:58AM camillegal wrote:

OK here I am almost 2AM--WIDE AWAKE---I did do some productive stuff around here today so I thought I'd sleep better. I did fall asleep around 10:30--I was so tired too and took my xanax-If nothin else this whole few yrs has taught me patience so maybe it will tak a little long for it to turn around for my system. So I can browse the computer and give my socrates-style wisdom and watch TV (yes wisdom and TV--mutlitasking)

Dx 2007, Stage IV, 24/38 nodes, HER2+
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May 23, 2012 11:52AM beau wrote:

Hi All,

 I just started yesterday ( after a year and half on arimidex) so I am happy to join you on this journey. I am hoping for less arthiritis on this drug, but we will see. Have a great day! beau 

Dx 5/5/2010, IDC, 2cm, Stage II, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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May 23, 2012 08:12PM MaryNY wrote:

Hi Beau: it will be interesting to compare notes as we embark on the Aromasin journey. I started this week too as did Lulubee. I woke up in the throes of a horrible night sweat this morning. Although I had those with Tamoxifen, they had tapered off a lot.

Mary ~~ lumpectomy 8/10/2009, Oncotype DX 18, Chemo 10/28/09--2/1/10 AC*4, CMF*4 Dx 5/19/2009, IDC, 1cm, Stage IIA, Grade 2, 2/6 nodes, ER+/PR+, HER2-

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