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All TopicsForum: Hormonal Therapy - Before, During and After → Topic: Arimidex for more than five years??

Topic: Arimidex for more than five years??

Forum: Hormonal Therapy - Before, During and After — Risks and benefits, side effects, and costs of anti-estrogen medications.

Posted on: Jul 11, 2011 11:38AM

NancyNY wrote:

I've been taking arimidex since Dec. 2004.  I wonder if anybody has data on the benefits/risks of taking this long term.  I'm afraid to stop, because I NEVER want to deal with this cancer again.  However,  I'm wondering if I should.  I'd love to get rid of some of these side effects.

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Jul 11, 2011 01:56PM theres126 wrote:

Hi Nancy-

I'm wondering the same thing!  My 5 years is up in August, and I really don't want to stop. My onc says 5 years is what is recommended for my stage and diagnosis.....  I don't have too many side effects - for me, not taking it is what scares me!

Dx 4/24/2006, IDC, <1cm, Stage Ib, Grade 1, 0/5 nodes, ER+/PR+, HER2-
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Jul 11, 2011 02:57PM elmcity69 wrote:

my numbers are different from yours, but my onc mentioned to me that I should take Tamoxifen after my 5 years on Arimidex. I'm menopausal due to 10/10 oophorectomy - but the 6 weeks of Tamoxifen prior to that were hell. Arimidex is a breeze.

Anyway, ask your onc - s/he will hopefully have a plan for that.Good luck.

j

Dx 9/24/2009, ILC, 2cm, Stage IIIc, Grade 3, 15/19 nodes, ER+/PR-, HER2+
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Jul 11, 2011 03:15PM NancyNY wrote:

That is the strange thing.  When I spoke with my onc. she said the "official" recommendation at this time with my diagnosis was arimidex for 5 years.  However, she said they were studying it as we spoke (about 6 months ago) and she said her 'gut' feeling was more would be better, but,  she could be wrong.  And then she left it up to me.  I've also heard the director of Sloan speak and he thought longer would probably be better as well. But it's still up to me, and I don't really feel comfortable making this decision.  Anybody have any thoughts on this?

Dx 5/18/2004, ILC, 2cm, Stage IIa, 0/4 nodes, ER+/PR+, HER2-
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Jul 11, 2011 04:46PM , edited Aug 10, 2012 09:59PM by del4

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Jul 13, 2011 10:52AM HappyTrisha wrote:

I took arimidex for 6 years and then stopped at the recommendation of my onc at Dana Farber.  I would have stayed on it forever.  I had no SEs that were anything I couldn't live with.  Interestingly enough, I am now going to take part in a clinical trial where I take femara for another 5 years.  It's a world wide clinical trial and my onc told me about it at my last annual appointment, a few weeks ago.  She also said that if I didn't have any major SEs with arimidex, I shouldn't have any with femara.  Here's hoping she's right.

I'M DOWN WITH CHEMO!
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Jul 13, 2011 07:41PM ruthbru wrote:

I'm finishing year four. I wish they'd come out with some long term study results. I will be scared out of my mind to go off it........

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIa, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Jul 13, 2011 08:48PM NancyNY wrote:

I agree Ruth.  I wish there would be more long term study results.   For those of you with only four years of arimidex, at least you have another year to hope results come out.  I feel like I'm going into this not knowing.  The side effects haven't been bad for me either, but, I figure that too much might be bad as well.  I didn't know about that study Trisha.  I'll ask my onc about it at my annual checkup which is next week. Thanks for the info.  I wish I had a crystal ball and could see into the future.  

Dx 5/18/2004, ILC, 2cm, Stage IIa, 0/4 nodes, ER+/PR+, HER2-
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Jul 13, 2011 11:10PM ruthbru wrote:

My 6 month recheck is next week too & I just put it on my list of questions. Usually BCO has a synopsis of the annual meeting of ASCO, and I've been hoping they'll have a write up of what was all covered & if this was addressed. I know it has been in the past and they always say that results of the long term studies weren't in yet. GRRR! If it isn't effective after 5 years then, of course, I don't want to take it. But if it is, then of course, I do!

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIa, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Jul 14, 2011 10:03AM ruthbru wrote:

Just spent an hour on the web trying to find some answers......didn't Frown. But the trial going on in called MA17R, couldn't find any date for when they will have some conclusions.
"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIa, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Jul 14, 2011 10:05AM SoCalLisa wrote:

I did my five years and finished five years ago now...I saw some things that made me believe that more was not necessarily better...so we all have to make the decision.

Biography: DX 11/2000 LCIS,DCIS,IDC 2B, Grade 1, ER+,PR+ Her2Neg 1 pos node Lumptectomy, CMF chemo X 6 mos, DX 8/2001, IDC same breast--Mastectomy , Left Breast Lumpectomy... Tamoxifen, one year...Armidex, Four years
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Jul 14, 2011 10:29AM NancyNY wrote:

Lisa,

Congrats on being 10 years out. 

What data did you see?  I'd love to look at it. 

Thanks, Nancy 

Ruth,  It is frustrating that they won't tell us what to do.... isn't it?  Nancy 

Dx 5/18/2004, ILC, 2cm, Stage IIa, 0/4 nodes, ER+/PR+, HER2-
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Jul 14, 2011 10:53AM coonie wrote:

I'm really interested in this topic too.  I've had some SE's, but not sure if they're all from Arimidex. I'm thinking since my Ooph has put me into menopause, some of my SE's stem from that. But I feel like Arimidex sure adds to them. I have 1 year and 10 months left and would LOVE to quit at that time. I'm tempted everyday, but I push forward and swallow because my doctor is so adamant that I take it.

Oh........congratulations Lisa on 10 years!!!!!!!!!!!! That's great!!! I'm looking forward to more data too.

Chemo: (4 AC) (4 Taxol); 1 Year Herceptin; Bilat. Mast.; Ooph; Last Arimidex Pill 5/31/13 Dx 11/14/2007, IDC, 2cm, Stage IIa, Grade 2, 0/15 nodes, ER+/PR+, HER2+
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Jul 14, 2011 11:02AM HappyTrisha wrote:

http://clinicaltrials.gov/ct2/show/NCT00553410

This is the trial I was talking about.  It appears that it is only for node-positive women.

I've seen posts on this forum from women whose doctors have told them to keep on with the AI past five years.  I remembering seeing one woman who has been taking it for (I'm pretty sure) 9 years.  My onc is on the conservative side, and without studies she felt that I should stop after 6 years.  She said there was some uncertainty about whether the AI was more effective if someone had stopped taking it and then started again at some point, as opposed to just taking it continually.  But now she thinks it's a good idea for me to be in this study.  Go figure. 

In any event, if I had an onc like the 9-year woman's onc, I would have never stopped taking it.  I was the one who pleaded with my onc to go beyond 5 years!

I ended up in the branch of the new study that stays on this stuff continually.  The other branch goes on 9 months, off 3.  The good thing about being in a clinical trial is that you can opt out any time you want to.  If I hear anything that makes me uncomfortable (other studies being done with negative findings) or if I end up with unbearable SEs, I can always stop.  But unless and until those things come about, I'm in.

:)

I'M DOWN WITH CHEMO!
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Jul 14, 2011 11:19AM HappyTrisha wrote:

I think a reason my onc may feel that it's good for me to be in this trial is because my bc was considered "aggressive", even though it was early stage.  I was at grade 3.  Maybe if I was at a lower grade she may not have recommended it?

She also told me that 15 years is considered the A-OK benchmark - as opposed to 5 or 10.  GRR! 

I was diagnosed in December of 2003.  I had IDC, a 2 cm tumor, with three other smaller tumors (known as trailers but all part of the same BC).  I also had 1+ positive nodes, meaning that one was positive and the second only had a micromet in it.  I was ER+/PR+, HER2+.

I had neoadjuvant herceptin, followed by a mastectomy, 4 cycles of AC, 23(?) radiation sessions, a month of tamoxifen (which I hated) and then switched to arimidex, followed by 9 additional months of herceptin.  I had a prophylactic mastectomy several months after completion of herceptin and then reconstruction 1.5 years later. 

I have accepted every possible treatment in an effort to rid myself of this disease.  If there is another tool in the arsenal, I say bring it on.

Wink

I'M DOWN WITH CHEMO!
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Jul 14, 2011 11:20AM NancyNY wrote:

That's interesting about taking time off.  My onc did tell me that I could take a break and go back on the drug.  But, how long off and on?  Boy do I have a list of questions for her next week......

Dx 5/18/2004, ILC, 2cm, Stage IIa, 0/4 nodes, ER+/PR+, HER2-
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Jul 14, 2011 11:28AM HappyTrisha wrote:

I really like the idea of taking time off and going back on (not that I can do that now.)  I wish my onc had suggested that.  I'll be interested to hear what your onc has to say, Nancy.  In the meantime I am going to see if i can find anything at all on the internet.  Will report back anything that I find.

I'M DOWN WITH CHEMO!
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Jul 18, 2011 05:15PM NancyNY wrote:

I saw my oncologist today.  She recommends that I stop taking arimidex (I've been taking it 61/2 years.)  She said that the american society of clinical oncologists just came out with new guidelines that said you should stop at 5 years.  That being said, she feels that if I want to begin again in 6 months, we can talk about it.  She assured me that the protection does last for several months/years after you stop taking it.  She also feels that alot of the aches and pains I'm experiencing, which I think are arthritis will feel better.  I asked her about the study Happy Trisha mentioned, but she hadn't heard of it.  Cry  So, I think I will stop, beginning tonight, or tomorrow.  Wish me luck.... Anybody have any thoughts?
Dx 5/18/2004, ILC, 2cm, Stage IIa, 0/4 nodes, ER+/PR+, HER2-
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Jul 18, 2011 08:25PM ruthbru wrote:

Yikes, it's scary, isn't it?! It is kind of a 'security blanket' for us. I see my onc. on Wednesday & will see if he has any words of wisdom. I still have a year left before I hit 5, but wish there were some 'real' answers based on hard research!

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIa, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Jul 20, 2011 09:13PM ruthbru wrote:

Saw the onc. today. 'Passed' my checkup....whew! He said that although the studies aren't in yet, he is willing to prescibe up to seven years if your bones are holding up and the diagnosis warrants it (being Stage 2, grade 3 would put me is his 'yes' catergory). He told me to go home and not worry about it since I have another year. But I'm relieved to have that option open.

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIa, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Jul 21, 2011 01:28PM HappyTrisha wrote:

I had to have a bone scan in order to qualify for the femara study.  The last one I had was in 2007, at which time I was diagnosed with mild osteopenia.  I had been on arimidex at that point for two years and remained on an additional four.  I've been on monthly Boniva on and off during that time, more off than on.  (That's totally due to my laziness.)  The results of my bone scan was listed as "no change" though a note on the bottom of the report said "slight improvement since last scan."

:) 

I did well in spite of myself! 

I'M DOWN WITH CHEMO!
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Jul 21, 2011 05:07PM , edited Jul 21, 2011 05:08PM by NancyNY

That's good news Ruth!  It's always nice to have an  option, and maybe when your five years are up the study results will be in.  Trisha, good luck on the study.  I wonder why my onc. hadn't heard of it.  She does work in the same practice as Dr. Moore who is on the panel of experts at this web site. Anyway, what is the name of this study. I'm curious to look it up and see what the criteria is. I'm not taking arimidex since Monday.  I'm very nervous, though I think my body feels better. Sorry Trish.  Still brain drain.  I just saw the link above.   

Dx 5/18/2004, ILC, 2cm, Stage IIa, 0/4 nodes, ER+/PR+, HER2-
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Jul 21, 2011 08:42PM , edited Jul 21, 2011 08:43PM by ILMBeaches

My 5 years is up August 2012.  I'm done.  I don't have many side effects but do not want to stay on it more than 5.  My onco said "we'll talk" next year but I've already made my decision. Maybe if I were younger I might think differently.

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Jul 23, 2011 02:04PM Marmarcia wrote:

Hi everyone!  I finish 5 years next week (2-yrs with Arimidex, 3-yrs Aromasin).  Saw my Onc this week all excited I was about to be finished withh all this.  He cited the study as well and has recommended I go back onto Arimidex for 5 more years or at least until the study's results come out.  Like many of you, he said it's up to me, if the SE or Arimidex are bad I can quit, etc.  It's very disappointing but I don't know what else to do.  I'd hate to be in a DR office years from now thinking I should have done the extra 5-years.Undecided
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Jul 23, 2011 07:12PM NancyNY wrote:

So it keeps getting scarier in a way.  I did choose to stop, (or take a break, not sure) taking arimidex this past Monday after six and a half years.  I did think the side effects weren't so bad.  But, after only a week of not taking it, I swear my joints ache less, I have more energy and sleep better.  On the one hand great huh?   On the other hand, if I can feel the difference this month, I'm scared the cancer cells will too.  So, do I go back on it, take my break, which my onc says is the way to go, or what?  I can't take part in the study you guys are talking about because I was node negative...

Dx 5/18/2004, ILC, 2cm, Stage IIa, 0/4 nodes, ER+/PR+, HER2-
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Jul 24, 2011 12:13PM , edited Jul 24, 2011 12:14PM by HappyTrisha

Nancy, that's a tough one and one that only you will ultimately answer.  As you can see from different posts, feelings/desires about continuing are all over the board.  If my onc would have allowed it, I would have remained on arimidex indefinitely.  She allowed me an extra year (6 years) in order to wait to see if any studies would reveal recommendations one way or the other.  It's only because this new study started up that she is allowing me back on it (back on an AI).  Either I was free from side effects or they became my new normal and I didn't notice them after a while, because I don't think I noticed any major difference when I stopped arimidex in February.  And to learn that there was a slight improvement in my bone density despite taking arimidex, well I was dancing in the street.

My only concern at this point will be to see if my onc is right and I have no major side efffects on the femara.  Once my body adjusted to it, and I think it was a matter of months, arimidex caused me no problems - or none that caused me to sit up and take note.

Good luck with your decision.  These things are never easy, are they!

I'M DOWN WITH CHEMO!
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Jul 30, 2011 11:13PM moonie wrote:

I just stopped taking Femara in May after being on it for 7 years. My onc let me decide if I wanted to stop or not at 5 years.  I was relieved as it was also my security blanket. I absolutely wanted to stay on it.  Then in December, I slipped on the ice, fell and had a bad break of my arm. Probably it had nothing to do with my osteopenia or the femara....but somehow, it just made me decide it was time to stop. I really never had any really bad side effects from the femara.  However, I had been really tired in the beginning and in the last year it seemed like I was always really tired again. My tiredness is soooo much better now that I am no longer taking it and it seems like I have better balance (maybe the fall was related?) and less light-headedness when I stand up too quickly.

I am still a bit nervous about the cancer coming back.....but I was also getting nervous about being on it too long as noone seems to know if that's a problem either....sigh...I liked hearing the theory about it working better after being off it awhile.  My onc told me it is still up to me....if I change my mind and want to go back on it, he will let me do that too.  His feeling is the max should be about 10 years (for now anyway) since noone really knows.

I am 'good' with my decision at the moment, but i think it really is something that each person has to get their head around and once the decision is made, be confident that for you, it is the right decision.

Cool

Dxd 12/03, DCIS, Mast, ILC, ooph, unilateral pedicle tram 2004
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Jul 31, 2011 06:45AM NancyNY wrote:

It sounds as if your situation is almost the same as mine. My onc left the decision up to me as well though she did recommend that I stop. I am also feeling better, more energetic and a little less joint pain. Hopefully results will be in soon from the studies to help us decide. It is scarey to me that we pretty much determine our own treatment with these powerful drugs, but I'm glad to have the choice.


Dx 5/18/2004, ILC, 2cm, Stage IIa, 0/4 nodes, ER+/PR+, HER2-
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Jul 31, 2011 07:12AM , edited Aug 10, 2012 09:59PM by del4

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Jul 31, 2011 10:21AM ruthbru wrote:

Some study has to be close to being done, doesn't it????? Yell
"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIa, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Jul 31, 2011 08:09PM , edited Jul 31, 2011 08:11PM by LizM

I just finished my 5 years of an aromatase inhibitor a couple of weeks ago.  I asked my oncologist if I could stay on and he agreed and said we would re-evaluate at my January 2012 appt.   I wanted to stay on until the first results of the MA-17R study came out, which I thought I read would be in August 2012.  I did not know there was another study comparing taking Femara for another 5 years vs taking Femara for 9mos on and 3 mos off for another 5 years.  I am very very interested in this new study.  Happy Trisha, what is the  name of the study so I can ask my oncologist about it?

Dx 9/19/2005, IDC, 2cm, Stage II, Grade 1, 1/8 nodes, ER+/PR+, HER2-

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