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Topic: Arimidex

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  • Posted on: Mar 21, 2009 12:35 pm
Joined: Jul 2007
Posts: 345
roxy42 wrote:

Hi ladys i dont see many women on arimidex,I have a question for anyone out there on arimidex.I have been on arimidex for almost a year.19 months out from treatment still NED.I have joint pains and cant sleep tried every sleep aid nothing works.I switched my arimidex from taking it at night to taking it in the morning,now I'm sleeping good at night.Is it ok to take during the day......godbless roxy

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mgm42
Wheatfield, IN/Bokeelia, FL
Joined: Oct 2009
Posts: 38
Oct 31, 2009 12:13 pm mgm42 wrote:

I believe it's a mistake to believe "no pain, no gain," when it comes to side effects from chemo and AI's.   My onc explained that each person's system metabolizes all meds differently, be they antibiotics or cancer drugs.  The SE's that one person experiences may be similar to those of another person, but not identical.  If SE are more severe for one person than another, it is NOT a sign that the drugs are working better for the one who is more debilitated, just that the med is being metabolized differently.  Hope this helps. 

Marilynn
Diagnosis: 11/7/2007, IDC, 1cm, Stage Ib, Grade 2, 0/2 nodes, ER+/PR+
Irishsun
Joined: May 2007
Posts: 33
Oct 31, 2009 01:24 pm Irishsun wrote:

I just checked the mayo site, which made me feel alot better.  Unfortunately I have most of the common side affects and alot of the less common side affects ass well.  I've been on all 3 commonly used meds with about the same results.  But no matter how bad it is, I've had breast cancer 3 times since 2005 and one bout with skin cancer..so I'll deal with it!

carolehalst…
Madisonville, LA
Joined: Jun 2009
Posts: 465
Oct 31, 2009 02:33 pm carolehalston wrote:

Thanks, Marilynn, for the explanation.  It does help clarify the situation.

Irishsun, sure hope your SEs get less severe.  I admire your determination.

BMX w/Alloderm & Silicone Implants 7/24/09, Oncotype Dx 9, No Chemo, Arimidex
Diagnosis: 6/25/2009, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2-
pj12345
little bit of Paradise, Fl
Joined: May 2009
Posts: 599
Oct 31, 2009 05:22 pm pj12345 wrote:

Irishsun,

Forgive me if this question is out of order and just ignore me...

but... have you been on AI's prior to and during your 3 episodes?  We put so much faith in the drug, it will be hard to hear if it has been that ineffective for you.   

Thanks for sharing your story with us.

Pam 

"Teach me your mood, oh patient stars, who climb each night the ancient sky" TX: Lumpectomy, 36 Radiation, Arimidex
Diagnosis: 3/3/2009, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
RoxanneC
Coldwater, MI
Joined: Feb 2007
Posts: 80
Oct 31, 2009 05:32 pm RoxanneC wrote:

I have been on Arimidex for a month and a half. When I had my onc. check up a few weeks ago, she started me on Zometa, since I was already osteopenic. She said that they have just finished some studies on Zometa, and that it not only strengthens your bones, but also reduces your chance for recurrance.

Roxanne

Left mast, no recon. AC x 4, Taxotere x 4. 33 rads. 1 year herceptin. Tamoxifen since 07'.Total hysterectomy 8/1/09. Switched to Arimidex 9/17/09
Diagnosis: 3/26/2006, IDC, 2cm, Stage IIb, Grade 2, 3/12 nodes, ER+/PR-, HER2+
rreynolds1
Guilford, CT
Joined: May 2009
Posts: 186
Oct 31, 2009 05:38 pm rreynolds1 wrote:

Hi Everyone,

I was told that the further a women is from menopause, the easier the SEs are.  I went through menopause 9 years ago and have very mild if any side effects.  I asked my onco if it was working and she said the SEs have nothing to do with how well it is controlling the estrogen.  I hope she's right!

Roseann

mgm42
Wheatfield, IN/Bokeelia, FL
Joined: Oct 2009
Posts: 38
Oct 31, 2009 06:18 pm, edited Oct 31, 2009 06:19 PM by mgm42 mgm42 wrote:

Roxanne, my girlfriend was in that Zometa trial.  You are right on - Zometa helps with bones and offers some protection against recurrence.  I wasn't aware that the trial was completed.  I'll check with my friend, as she stays on top of all of these things.  Thanks for the heads up. 

Marilynn
Diagnosis: 11/7/2007, IDC, 1cm, Stage Ib, Grade 2, 0/2 nodes, ER+/PR+
pj12345
little bit of Paradise, Fl
Joined: May 2009
Posts: 599
Nov 1, 2009 02:01 pm pj12345 wrote:

I came across this entry on another thread and thought it very informative on the subject of knowing if you AI (Arimidex in our case)  was working or not.

Pam 

Oct 26, 2009 10:32 pmTenderIsOurMight wrote:

Having taken both Tamoxifen and AI's now for eight years, I know of no test which shows it's doing it's job.

I do know of some tests to suggest it's not doing it's job: tumor markers which double, bone scans which turn positive, PET scans which light up. The latter are done only when there are problematic symptoms for most of us, although I do see a subjective increase of women who undergo PET scanning for staging initially. You can read BC.org's ASCO statement on tumor markers on the home page: they are still not endorsed, but many of us have oncologists who believe in them. 

No one knows the needed range of our blood estradiol while on AI's. How low to go vs how high not to exceed is currently anyone's guess, but most think being on the low side is somewhat better (MA-17 clinical trial and distant recurrences, Paul Goss MD). Nevertheless no one get's these values on a regular basis since the experts don't know what to do with them. There are fancy urinary bone tests which can be done to see if your bisphosphonate is likely working. They are still mainly done in research setting I believe.  Like the others have said, it seems the absence of further disease is what presumes the AI is still working.

In the future, there may be some tests. Perhaps CTC's: circulating tumor cells, and DTC's: disseminated tumor cells may somehow help. These tests are run prior and during new chemo for mets. I don't know if the algorithm is refined and works though. There's work being done on the mucin receptor on the outside of breast cancer cells, as seen through blood work, with hopes that a vaccine may possibly work against any viable cells. There's a whole lot more, but I can't seem to remember a lot of it tonight.

I keep taking my AI at 2:30 p.m. every afternoon. And yes, mawhinney, each day I ask, is it working? Only time will tell.

Best to you,

Tender

"Teach me your mood, oh patient stars, who climb each night the ancient sky" TX: Lumpectomy, 36 Radiation, Arimidex
Diagnosis: 3/3/2009, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
sunflowers
MA
Joined: Aug 2007
Posts: 387
Nov 1, 2009 04:36 pm, edited Nov 1, 2009 04:36 PM by sunflowers sunflowers wrote:

I don't think it IS true about the worst SE's meaning Arimidex is working.  My oncologist was very pleased that my SE's had mostly gone away.  She also explained oncologists are finding that our bodies start to 'accomodate', or maybe it was compensate?  well, get used to being without estrogen.

Pam, as I understand it, Arimidex inhibits the aromotase which the body needs to create estrogen and the Tamoxifen blocks any possible E+ cancer from using estrogen.  So women taking Tamoxifen still have aromotase in their bodies and can create estrogen, ovaries, adrenal glands, and good ole fat.

sobx
Morehead City, NC
Joined: Sep 2008
Posts: 199
Nov 1, 2009 08:22 pm sobx wrote:

All I know is that I will take it and continue with SE's. Beats Cancer again. Ibuporfen helps with the stiffness and I walk and take yoga to help limber up.

Joy
kat43
Oklahoma City, Ok
Joined: Apr 2009
Posts: 39
Nov 1, 2009 09:24 pm kat43 wrote:

Question on Arimidex.  Does it stop all aromotase in the body from producing estrogen, even the estrogen produced in the fat in our bodies?  I am overweight so am wondering how much estrogen reduction I will get from the Arimidex if it does not prevent the fat from producing    estrogen.  


Diagnosis: 4/6/2009, IDC, 2cm, Stage IIa, Grade 3, 0/3 nodes, ER+/PR+, HER2-
mgm42
Wheatfield, IN/Bokeelia, FL
Joined: Oct 2009
Posts: 38
Nov 1, 2009 09:58 pm mgm42 wrote:

It was my understanding that aromatase does not produce estrogen, but rather disables cells from absorbing estrogen produced by the body.  I think that may be "why" many of us are worried about what happens when we stop taking this inhibitors.  At least this is what I was led to believe. 

Marilynn
Diagnosis: 11/7/2007, IDC, 1cm, Stage Ib, Grade 2, 0/2 nodes, ER+/PR+
pj12345
little bit of Paradise, Fl
Joined: May 2009
Posts: 599
Nov 2, 2009 06:30 am pj12345 wrote:

http://www.arimidex.com/arimidex-about/how-arimidex-works.aspx

The above is a link to a video that explains how Arimidex works.  In a nutshell:  After menopause the ovaries are not producing estrogen.  But small amounts are being made in the liver, adrenal glands and fat cells.  This estrogen is a combination of androgen and aromatase that bind together to become estrogen.  An AI, Arimidex, bonds to the aromatase cell and prevents it from linking to the androgen cell and keeps it from turning in to estrogen.  So the drug does not stop estrogen from feeding the cancer cell... it stops the process that makes estrogen in our postmenopausal bodies.  While the video initially mentions estrogen and fat cells, when it gets into talking about how the drug stops the process it only, at that point, talks about liver and adrenal glands... maybe I missed something.  I'm not clear about E from fat cells.

Carole:  In this video Astra Zeneca does say the drug can raise your cholesterol!!!

I'm sorry I do not know how to hyperlink here.  you have to copy and paste the URL.

Pam 

"Teach me your mood, oh patient stars, who climb each night the ancient sky" TX: Lumpectomy, 36 Radiation, Arimidex
Diagnosis: 3/3/2009, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
mgm42
Wheatfield, IN/Bokeelia, FL
Joined: Oct 2009
Posts: 38
Nov 2, 2009 08:44 am mgm42 wrote:

Thanks so much.  That was very informative and I appreciate it.  Hope all is well with you.  This is my second week back on Arimidex and although the SE's are back, I want to thank all of you on this page.  Because you share so openly about how you feel, the aches, the pains, the miseries and yet you perservere, you give me your collective strength to stay on this stuff as long as I can manage.  Thanks again.

Marilynn
Diagnosis: 11/7/2007, IDC, 1cm, Stage Ib, Grade 2, 0/2 nodes, ER+/PR+
sunflowers
MA
Joined: Aug 2007
Posts: 387
Nov 2, 2009 03:37 pm sunflowers wrote:

Kat43

I know my oncologist is adamant about my losing weight  which I'm doing, slowly, but at least going in the right direction.   She said being overweight is definitely a negative factor - and how important it was to lose weight, some studies have found it does increase the possibility of a reoccurance.  I have no data on it, but definitely take my oncologists word that is is a good thing to lose weight if you're overweight.

ChrisC433
Montoursville, PA
Joined: Feb 2009
Posts: 292
Nov 2, 2009 11:13 pm ChrisC433 wrote:

mgm42:  It is certainly not the easiest of drugs to handle. My hands are so stiff and sore.  My ring fingers keep locking up and hurt when I release them.

You are right though.  The alternative is much worse.  I will live with my aches and pains if it means i don't have to deal with surgery, chemo, and rads again!  I guess we are all just looking for the best way to deal with the SE's as they occur.

Hugs to all...


Diagnosis: 2/5/2009, IDC, 2cm, Stage II, Grade 2, 2/8 nodes, ER+/PR+, HER2-
enjoylife
MO
Joined: May 2008
Posts: 399
Nov 2, 2009 11:21 pm enjoylife wrote:

I take Arimidex at night and don't have problems with sleep normally but my sister takes hers in the morning and she is also doing fine I think whatever works for you. Since chemo I also am on a calcium supplement once a month from having Osteriopenia sorry if I misspelled but there are so many meds and long names at 58 (in a week ha) I have all my meds typed up so when  go for any test or dermatologist etc I have my list with me

sobx
Morehead City, NC
Joined: Sep 2008
Posts: 199
Nov 4, 2009 08:19 pm sobx wrote:

Was walking through Walgreens the other day and saw a neti pot. I think a few back you all were talking of them. Just thought i would throw that in. At least you know I have been reading the post. I'm just a little slow down here in the south.

Joy
rreynolds1
Guilford, CT
Joined: May 2009
Posts: 186
Nov 4, 2009 09:08 pm rreynolds1 wrote:

Is anyone experiencing huge mood swings?  I wake up in a great mood then later in the day I become a real crab.  Little thing will set me off.  I can't seem to stop myself.  It's like permanent PMS!

Roseann

pj12345
little bit of Paradise, Fl
Joined: May 2009
Posts: 599
Nov 5, 2009 07:26 am pj12345 wrote:

Hi Roseann,

I am not experiencing mood swings but it is the one side effect my med onc always asks me about.  Either she thinks I am unstable or it is a common SE of Arimidex... the latter I am sure.  

Even though I have been thinking how good I am doing my DD just said I move like I am 100 :(  Not what I wanted to hear.

Pam 

"Teach me your mood, oh patient stars, who climb each night the ancient sky" TX: Lumpectomy, 36 Radiation, Arimidex
Diagnosis: 3/3/2009, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
hrf
ON
Joined: Nov 2004
Posts: 887
Nov 5, 2009 08:11 am hrf wrote:

My hands are a little stiff but it's manageable. My mood is miserable but I don't know if it's the Arimidex or other factors. I think I was miserable before the Arimidex. But my hair is not growing back and that is pretty bad along with not being able to lose weight.

BRCA2+ first dx in Oct. 2004 2nd dx Feb. 2009 a new primary
Diagnosis: 2/6/2009, ILC, 2cm, Stage II, Grade 1, 4/6 nodes, ER+/PR+, HER2-
carolehalst…
Madisonville, LA
Joined: Jun 2009
Posts: 465
Nov 5, 2009 09:49 am carolehalston wrote:

I have no problem with mood swings but I'm taking Effexor, 75 mg, daily.  The med undoubtedly helps mellow out my moods and also helps with the hot flashes.  Yesterday I wasn't bothered with what I called my "heat waves"!  I warn my dh, "I feel a heat wave coming on."  He'll be sitting in the living room, perfectly comfortable, and I jump up and turn the ceiling fan on high!  Poor fellow doesn't complain. 

I keep watching for trigger finger after reading that Arimidex can cause it.  Last night both little fingers hurt.  I took a couple of Tylenol for arthritis.  Playing golf 2 days in a row might have something to do with the fingers hurting. 

All in all, I'm doing well on Arimidex so far.  Fingers crossed.

BMX w/Alloderm & Silicone Implants 7/24/09, Oncotype Dx 9, No Chemo, Arimidex
Diagnosis: 6/25/2009, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2-
mgm42
Wheatfield, IN/Bokeelia, FL
Joined: Oct 2009
Posts: 38
Nov 5, 2009 10:07 am mgm42 wrote: Carole - I'm so glad you are doing well on the Arimidex.  That's GREAT!  By the way, I have a nice set of Calloway clones that I'm looking forward to using after I have my trigger finger surgery sometime next year.  Yeah! 
Marilynn
Diagnosis: 11/7/2007, IDC, 1cm, Stage Ib, Grade 2, 0/2 nodes, ER+/PR+
kat43
Oklahoma City, Ok
Joined: Apr 2009
Posts: 39
Nov 5, 2009 10:30 am kat43 wrote:

I took my second dose of Arimidex last night, how soon will it be before I have hot flashes?  My hands have been "asleep" both mornings and that is the only thing I see that is different.  They wake up with me shaking my hands for a few seconds.  


Diagnosis: 4/6/2009, IDC, 2cm, Stage IIa, Grade 3, 0/3 nodes, ER+/PR+, HER2-
JackieFolk
Springfield, Mo
Joined: Nov 2009
Posts: 1
Nov 5, 2009 10:35 am JackieFolk wrote:

I started taking Arimadex in March of 2009 after finishing chemo and radiation. I didnt notice any thing at first. Now Im to the point I cant walk without a cane or walker, I cant grocery shop etc... M knees hurt like no other pain I have ever had. Yet Im afraid to not take it. I keep telling myself its this or would I rather have my cancer back. I dont know the answer.


Diagnosis: 5/1/2008, LCIS, 2cm, Stage II, Grade 2, 0/3 nodes, ER+/PR-, HER2+
pj12345
little bit of Paradise, Fl
Joined: May 2009
Posts: 599
Nov 5, 2009 10:55 am pj12345 wrote:

CaroleH,

My pinkie finger, left hand, has been very sore lately with no explanation.  Gets better as the day progresses but flares up again next AM.  How weird.  I can't blame it on golf though.  If you find a cure, let me know.

Pam 

"Teach me your mood, oh patient stars, who climb each night the ancient sky" TX: Lumpectomy, 36 Radiation, Arimidex
Diagnosis: 3/3/2009, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
patoo
Central, NJ
Joined: Feb 2009
Posts: 1,562
Nov 5, 2009 12:06 pm patoo wrote:

Kat43, se's are different for everyone and may start right away, a month later or even 2 years later.  There's no telling.  It does seem that everyone did get the hot flashes.  I've been on since March and I think mine started around May/June.  However, they are pretty mild and only last a few minutes for me; usually no more than 2-3 times a day.

JackieFolk, you started Arimides the same time as I did altho I didn't do chemo.  Are you taking (or can you take) any supplements for the joint pain?  Or mention it to your med onc?  I know it doesn't work for everyone but the glucosamine has worked quite well for me for the hip pain which came back after years of being gone.  Only had issues with one knee recently and could walk fine but was unable to go up or down stairs.  Ortho doc gave me a cortisone shot 3 weeks ago and now I'm pain free - almost ready to run a marathon (yeah, right!)

But, as JO-5 always tells us, se's of Arimidex are easier to manage than se's of BC.

Each time you read a post from me know that a prayer is going up for you.
Diagnosis: 10/24/2008, ILC, 1cm, Stage Ib, Grade 1, 0/5 nodes, ER+/PR+, HER2-
sunflowers
MA
Joined: Aug 2007
Posts: 387
Nov 5, 2009 03:48 pm sunflowers wrote:

Roseann,

Depression, mood swings, are such a known SE of all the AI's - my oncologist required me to speak to a psychopharmacologist at the hospital about taking antidepressants.

I don't know how any woman goes through BC without anti-depressants.  Not only to ease the hot flashes, but to (try to!!) stay somewhat sane.  Really.  I hope you'll talk to your doctor about taking something.  As we're all on Arimidex, we don't have to worry about the contraindications women on Tamoxifen have with the SSRI's.

carolehalst…
Madisonville, LA
Joined: Jun 2009
Posts: 465
Nov 5, 2009 09:09 pm carolehalston wrote:

JackieFolk, sorry you're experiencing such horrible SEs.  Have you tried taking glucosamine/chondroitin and fish oil caps?  I've also been drinking 4 oz of pure cherry juice daily for about 3 wks after I read that it contains an ingredient that's in anti-inflammatory meds.  I try to exercise regularly.  I've only been on Arimidex 7 wks, so my SEs will possibly become more severe with time and estrogen deprivation.

I would definitely recommend Effexor for the hot flashes and mood swings.

Good luck to all of us who take the dreaded little white pill.

BMX w/Alloderm & Silicone Implants 7/24/09, Oncotype Dx 9, No Chemo, Arimidex
Diagnosis: 6/25/2009, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2-
samedaynurs…
Joined: Dec 2008
Posts: 161
Nov 5, 2009 09:31 pm samedaynurseJan wrote:

I dont do much posting on the boards anymore, I am actively involved in taking care of our breast cancer sisters at work, but I do continue to read the Arimidex board when I can. On a positive note.....I have been taking Arimidex for 10 months now....I take it every morning at 7:30am , I take 2000U of Vit D3, Calcium Carbonate, and 500mg of Magnesium daily....it is my belief that these supplements esp the Magnesium are making my Arimidex journey very easy so far. I also walk close to 2 miles every day rain or shine....I have 1-2 huge but brief hot flashes every day and beyond that I cant mention a single problem I have, a little creakiness here and there but activity helps that. Both my BS and Rad Onc tell me that the bigger percentage of their patients do not have disabling symptoms with Arimidex. I just wanted to say something positive and wish you all the very best of luck on our journey to good health !!!! 

jan

A life lived in fear....is a life half lived.
Diagnosis: 12/1/2008, IDC, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2-

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