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All TopicsForum: IDC (Invasive Ductal Carcinoma) → Topic: Has anybody else quit taking Arimidex?

Topic: Has anybody else quit taking Arimidex?

Forum: IDC (Invasive Ductal Carcinoma) — Just diagnosed, in treatment, or finished treatment for IDC.

Posted on: Feb 8, 2008 04:17PM

Carole1213 wrote:

I completed treatment in the spring of '06, did a year of Herceptin, and have been on and off Arimidex, Femara and Aromasin. I have had a hard time with side effects (especially lethargy and brain fog) and finally decided to quit aromatase inhibitors prematurely as the loss of brain function was unacceptable -- ... If you're in a similar situation, I'd like to hear from you.

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Posts 1 - 16 (16 total)

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Feb 8, 2008 04:31PM FLtricia wrote:

Carole,

Scroll down to Hormonal Therapy section, open it and scroll down to "quitting hormone therapy" by Joanofardmore.  You will relate to that thread.

Best wishes.

Dx 9/25/2006, IDC, 1cm, Stage I, Grade 1, 0/16 nodes, ER+/PR+, HER2-Dx 5/2013, IDC, 1cm, Stage I, Grade 1, 0/6 nodes, ER+/PR+, HER2-
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Feb 8, 2008 04:31PM roh wrote:

Hi Carole, I'm not in the same situation as you having only been on Femara for 2 months. However, feel very 'iffy' about it and not at all sure i will stick the 5 years. Currently feel very tired but that could be chemo/radiotherapy which I have just finished but also have a lot of stiffness and pain in my bones and muscles. At the moment I am finding it 'tolerable' and sticking it out but if I felt it was affecting my brain function I think I would give it up - I am actually in fear of that and every time I forget a word I wonder if it's the Femara!!!

It's very diffiuclt to come to a 'right' decision as there are so many pros and cons and I think it has to be up to each individual. I just wanted you to know that I don't think you are crazy and that I can see myself doing the same thing if my symptoms deteriorate

Asia

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Feb 22, 2008 07:41AM hostanut wrote:

I have been on Arimidex for almost 1 1/2 yrs. now, and when I first started, in the fall of the year, my hands felt terribly stiff in the AM.  I didn't know whether to blame it on the med., or the colder weather.  I guess I just decided for me, with the relatively minor discomfort it gave me, it was important enough to keep on going.  I walk a dog 2 x/day, and keep active.  Even though I have some stiffness, I just take a couple of naproxen if it gets too much, and keep on truckin'!!  I feel quite blessed, actually, as I've read of others who are almost debilitated by the AIs.  I had a lumpectomy and radiation, now the Arimidex.  Since I skipped the chemo, I don't give myself skipping the Arimidex as an option.  Hope you feel better, and can stick with it!

DX 4/06, IDC, 2.5 cm.,stage IIa, grade 1, 0/3 nodes, ER+PR+, HER-2 neg.

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Feb 25, 2008 10:11AM chesketh wrote:

Hi Carol,

I took Arimidex for a while but then change to fermara because of side effects. The side effects were no better on the fermara. I told my oncologist I wanted to stop taking it but she told me I could get cancer back. I was taking 9 different supplements trying to get relief nothing worked. The side effects I was having were body aches, swelling, brain fog and hot flashes. I was introduced to a nutritional product three months ago and since taking it all my side effects have gone away. I first notice my swelling was going away then my joints felt better and after three months my foggy brain and hot flashes are gone. My quality of life is so much better. Please email me at chesketh@photomation.com if your interested in finding out more about the product.

Charlene

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Feb 25, 2008 01:18PM RIV54 wrote:

I was on Arimidex for 6 months. The first 5 I had no problems except some water retention in my feet and legs. During the 6th month every bone and joint in my body started to hurt. Dr switched me to Femara. Some of the pain has subsided, but now my right thumb is acting up, pain and stiffness. Overall pain is better. its only been a month and I'm still trying to decide waht my options are. Stopping AI, though is not an option for me. Too scared of reoccurence or metastasis. Good luck.   

Gina

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Feb 28, 2008 04:04PM harvey wrote:

I stopped taking Arimidex after just 6 weeks. The pain  in my joints was horrid - however the mental fog was worse.

My unc is not to pleased but agreed it wont make a lot of difference to the out come.

I have to work full time as I am the only bread winner. I chose quality over quantity every day.

 Also the welfare of my family has to come first.

No point in living for years if your homeless and hungery.

If the glass is only half full - get a smaller glass. Now your glass is full again.

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Mar 27, 2008 11:44PM Raylene wrote:

I started Arimidex in Dec. of 2007. The stiffness and joint pain started soon after . After 6 months of chemo and 6 1/2 weeks of radiation I assumed I was still having problems with chemo brain but it seems to be lasting much longer than I had expected..I finished chemo July of 2007 I am in a fog most of the time and can't remember dates or even conversations from the day before. I'm 57 and am tired of everyone telling me that everyone over 50 deals with the same thing. No! I guess you have to live it to understand. It is not that simple and is very frustrating and embarrasing. I am still on arimidex but am considering talking to my Dr. Last visit I was told I may need to be on Arimidex for 10 years Maybe I should try one of the others. I have always worked out, eaten healthy, never smoked or drank. I never had joint pain or the foggy brain. I made it through the treatments and managed to keep a positive attitude , I did very well, but.......I thought I would be in a better place by now. I'm so glad I have found this group, now I know I'm not alone. Good luck to you all!

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Mar 28, 2008 11:22AM LizM wrote:

I did not stop taking an AI but I did stop taking Arimidex and switched to Femara.  I was on Arimidex for one year.  I felt very anxious, had abdominal pains and some joint/muscle pain mostly in upper shoulders.  After a year I asked my oncologist if I could switch to Femara.  I feel more calm on Femara, sleep better and do not have abdominal pains; however, my joint/muscle pain is worse with Femara.  I now have moderate joint/muscle pain mostly in my arms, shoulders and neck.  I try to get by with Aleve or Advil, exercise, and heat.  I plan to hang in there because I am afraid my chances of a recurrence will significantly increase if I stop. 

Dx 9/19/2005, IDC, 2cm, Stage II, Grade 1, 1/8 nodes, ER+/PR+, HER2-
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Mar 28, 2008 12:52PM LisaEllen wrote:

I am so glad to hear of the brain fog with Arimidex!  I thought it was me.  My mom and dad seem to be showing early signs of alzheimers and my grandma died of it.  I thought that I had either developed permanent brain fog from chemo or was showing the same signs.  I have not admitted this to anyone else because I was ashamed.  I married a very, very smart doc.  I could barely keep up with the conversation before bc.  Now it seems hopeless.  Yesterday, I called our most wonderful vacation spot Paris and meant it.  DH looked at me as if I was reaally off bc it was Rome.  I am 37 and scared.  I have 4.5 more years of this stuff.  I am beyond trying to exercise my brain with crosswords, although I try.  What an awful feeling.

Dx 3-18-07,2.2cm tumor,stageII,grade3,8 rounds ACT,no rads,Infiltrating ductal,0nodes, bi-latmast.10-07,expanders2-27-08

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Mar 28, 2008 05:32PM, edited Mar 28, 2008 05:33PM by Bren-2007

I tried Arimidex for a week and Tamoxifen for 6 weeks.  I was 51 at diagnosis with IDC .7 cm tumor, no nodes, er/pr 100% pos. hr/++.  I had a lumpectomy with .6 cm margins and radiation.  I've been off HT for 6 months. 

I've also had a total hysterectomy.  Of course my docs want my on some type of HT, but I couldn't stand it.  My onc did say that 10 mg of Tamoxifen was better than none, so I may give it a try a lower dose.

I'm 52 now and can't remember anything.  I give up and just point.  It's probably a combination of fatigue, stress and no estrogen/menopause.  The benefits to me in terms of recurrence with an AI is about 8%, with Tamox about 5%.  Have to weigh that against QOL. 

Best of luck to you.

Bren

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Apr 1, 2008 12:10AM Snewl wrote:

Hi Carole,

Yes, Yes and Yes! The fatigue, brain fog and plain bad mood are horrible. Worse than the pain. I finished tx 9/06 and started on Arimidex and then switched to femara several months later and am still taking it. I HATE IT! I continue taking it because I'm afraid not to. I am at high risk of reoccurrence and the Femara helps lower it (doesn't make it go away though.) The doc said I may continue this for 10 years - that over 8 to go. Sometimes I wonder if it's worth it feeling lousy when it could come back anyway.

Shirley 

Courage is just fear that has said its prayers.

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Apr 6, 2008 01:33AM sln1967 wrote:

Hi Carol,

 I also was put on Arimidex, but I did stop taking it.  I couldn't do the brain fog and also thei joint pain.  Arimidex was also causing LE in me.  I tried tamoxifen, but couldn't tolerate it either.  I'm just keeping my fingers crossed.  Good luck with treatment.

Staci

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Apr 7, 2008 09:17PM, edited Apr 29, 2008 05:41PM by TenderIsOurMight


Hi Staci,

I see you're relatively new to bc.org discussion forum, so wanted to say hi. I'm sorry about your LE. You may wish to stroll down to the LE thread, and post how it's doing. Binney is truly a gift to us on helping with it.

I'm sorry the hormonals didn't work for you ladies. Never forget you can re-start them at any time.

Best to you all,
Tender

It cannot be emphasized too strongly that treatment of each patient is a highly individualized matter. (FDA-approved labeling for warfarin (Coumadin) NDA 9-218/5-105)

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Apr 30, 2008 03:38PM crickett wrote:

Hi has anyone out their been on it longer then five years,,,my six month checkup for breast cancer was last wednesday.The doctor convinced me to stay on arimidex longer then five years (5- years up in may)He kept saying..your Tumor was 3.7 centimeters long,it was in 4 out of 12 lymp nodes,you had agressive chemo and radiation,and hormone therapy for five years,but their is no guaran tee,that it is all gone..now i decided to quit taking the arimidex right now i 'am taking every second day,to try and ween my self off ..I hope i 'am doing this right any suggestions..

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Apr 30, 2008 04:02PM, edited Apr 30, 2008 08:37PM by TenderIsOurMight

Hey Crickett,

Yes, I am on for more than five years for the same reason. Higher risk of body spread due to positive node, and research showing these ER+ cancers often recur late, with 50% of such recurrences occuring after the first five years from initial diagnosis. I understand the risk of recurrence between 5 and 10 years is 2% recurrence risk per year for node negative individuals, and a 4% per year recurrence risk for node positive individuals.

This may be some of what your oncologist is considering when he has suggested staying on the Arimidex past five years.

Hope this helps,

Tender 

It cannot be emphasized too strongly that treatment of each patient is a highly individualized matter. (FDA-approved labeling for warfarin (Coumadin) NDA 9-218/5-105)

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May 11, 2008 12:00PM Lynne wrote:

My oncologist is switching me to Tamoxifen. I've been on Arimidex since 2 weeks after my hysterectomy/oopherectomy December 2005 at 43. I went off it for 9 months and tried Femera, the side effects were much worse. I went back on Arimidex and will be switching when the bottle is empty, in about a month. I told my oncologist that I was ready to stop taking anything. She suggested that I try Tamoxifen because it doesn't have the joint pain. I'll let you know how that works out.

Good luck

Lynne

Mets in spine, lungs, and liver. Carpe Diem-Live for Today

Dx 5/26/2005, IDC, 1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-Dx 6/26/2012, Stage IV, mets, ER+/PR+, HER2-Surgery 06/06/2005 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Radiation Therapy 06/30/2005 ExternalHormonal Therapy 12/20/2005 ArimidexHormonal Therapy 12/18/2006 FemaraHormonal Therapy 03/20/2007 AromasinHormonal Therapy 12/19/2007 TamoxifenHormonal Therapy 07/20/2012 FaslodexRadiation Therapy 07/30/2012 External