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Topic: Arimidex - Coping with the SE's

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

This is a safe place to share your experiences of others considering or on hormonal treatment.

Posted on: Jul 28, 2010 12:22PM - edited Nov 15, 2017 01:01PM by Moderators

Lowrider54 wrote:

Not just for Arimidex but all the Hormonals - se's are so similar so coping with them should also be similar and the remedies offered should work for any of the Hormonals - don't go away, read on if you are taking any of the hormonal treatments....

For those of us who are taking this potentially life saving/life prolonging drug, it does not come without side effects. There are some very lucky folks who don't have any...GREAT! But for those that do, lets share how we cope with the hot flashes and night sweats and stuff.

The 'Arimidex' thread covers more than just side effects and coping - there is much debate over it going generic and the effectiveness of its use. I am putting this up in hopes that new users can find the answers concerning the se's easily. Of course, please visit the Arimidex thread for more information concerning the statistics, research and controversy surrounding many of the AL's and new treatments we are being offered today.

Treatment is always a personal choice - if Arimidex is your choice, these kind folks can help you manage some of the issues that some with taking it.

I elected to take a low dose of Effexsor to aide with the hot flashes and night sweats. It worked very nicely for me. Water intake and walking assists with the possible joint pain. I eliminated as much gluten from my diet as I could (that stuff is in everything....lol) and did not experience weight gain - I did experience 'weight re-distribution' however - it seems to go to the tummy. I haven't found a good solution for that yet. Cool

Good Luck All!

Hugs

LowRider

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

Smile...it will make people wonder what you are up to...Initial dx 04/99 - CMF; 9/2009 bone mets Arimidex; 6/2010 Faslodex/Xgeva; 8/2011; abdominal wall invaded, ER/PR flipped to TN, Abraxane/Avastin//Xgeva 09/02/2011; 11/2011Xeloda/Avastin/Xgeva. Dx 9/16/2009, Stage IV, 5/25 nodes, mets, ER-/PR-, HER2-
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Nov 29, 2010 11:39AM molly52 wrote:

Hi jp3 - Welcome to our forum.  Sorry you have to be here.  Here you are allowed all the self pity and rants you need.  We understand.  With you history of osteoporosis, I would be surprised if they put you on Arimidex.  I may be wrong, but I believe Tamoxifen is better for bones.

enjoyful and susand - my appetite changed on Arimidex.  I am still trying to figure out why.  I  couldn't eat anything I cooked or prepared myself.  I existed on frozen meals, restaurants and junk food.  After a long while, I learned to cook one day and eat it the next and fruits were okay; vegetables weren't.  I am wondering if it was my sense of smell (it diminished) or my taste buds went out of wack.  Just mentioning in case it helps at all.

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Nov 29, 2010 11:49AM Enjoyful wrote:

Thanks, molly!

Actually, that does help.  I'll be sure to mention it to my onc on the 16th, because he doesn't see these side effects too often.  I'm curious if your onc had an opinion on it? 

I haven't lost my taste buds or sense of smell, but nothing looks appetizing.  Especially vegetables!

BENGHAZI! Dx 9/2004, IDC, 1cm, Stage IIIA, Grade 2, 4/14 nodes, ER+/PR+, HER2- Dx 8/28/2009, IDC, 2cm, Stage IV, Grade 2, ER+/PR-, HER2-
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Nov 29, 2010 01:32PM molly52 wrote:

The day my onc gives an opinion on a side effect, I will fall on the floor!  The process here seems different from the US.  Oncs deal with treatments/chemos, GP's everything else.

Ya vegetables.  Don't know why I carried them home from the store.  Should have just dropped them in the garbage on my way out.  Complete 360 from pre bc.

I still like chocolate.  No problems there.

Do you eat better when you are out with friends?

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Nov 29, 2010 01:43PM hound wrote:

On Arimidex for three months, then was able to get the Generic Anastrozole for a lot less money. The generic was produced by Zydus.  The new year is coming and now it seems that the generic has disappeared from all of the Medicare drugs programs and is no longer available.  For the year 2011 I will have to purchase the drug Arimidex at a more substantial price which will place me in the "donut hole".. Does anyone know anything about the generic and why it is not longer available??

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Nov 29, 2010 01:43PM JanetinVirginia wrote:

OK ladies - so today was the day.  I've had my A prescription for two weeks - been putting it off and told myself I'd start after Thanksgiving.  So I stared at the bottle for a while, then cut the pill into fourths!  Took one fourth and keep waiting to be hit by lightning or something.  Am I a total wimp to want to ease into this? 

Dx 9/1/2010, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Nov 29, 2010 03:41PM Raj20 wrote:

I am with Arimidex  for about 3 and 8 months. Its is very difficult to get the same from medical store in my place. I have to order it beforehand otherwise  it has to brought from the Capital on higher price. Last week, there was only 4 strips (14 tabs in one strip) in the store. They allowed me only two strips for 28 days. I have decided to confirm from  my doctor on my next follow up check up in Jan,2011 that, for how long  Arimidex is to be continued as  I am having appetite change problem as Moly52 says and weight gain is secondary.

snehlata Dx 3/26/2005, IDC, Right, 2cm, Stage IIB, 1/1 nodes, ER+/PR+, HER2-
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Nov 29, 2010 03:49PM don23 wrote:

Janet - you're not a wimp. After reading the posts here it is understandable you're a little nervous. I had to laugh about the waiting to get hit by lightning. At least you have a sense of humor about the whole thing. Keep up your good spirits and I'm sure you'll do fine.

Dx 4/10/2009, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Nov 29, 2010 04:52PM NativeMainer wrote:

Jp3-No need to excuse yourself. This is the place where we come to rant, rave, cry, get answers to questions, and generally find understanding. Of course you are angry. Of course the ER/PR+ status doesn't sound like good news. The fact that I have a "good" variant of breastcancer does not mitigate the fact that I had cancer. There is no such thing as a "good" cancer.

Enjoyful-it always creates a lot of discussion when I teach nursing students about pain control and addiction. Addiction is a psychological/behavioral condition where a person takes a substance not for the use it is intended, but for a side effect, usually euphoria. A person cannot become addicted to a pain medication as long as the person has pain. A person can develop tolerance, which is the purely physical effect of the body adapting to the presence of the substance, and needing more to get the same effect. That's why someone on pain medication for a long time needs to have the dose increased periodically to keep the pain under control. If the pain goes away (if the cause of the pain is corrected) then the person needs to be taken off the pain medication gradually, in steps, to prevent physical withdrawal symptoms. The person being weaned off a pain medication is not considered addicted. Take the medication if you need it, there is no reason not to have pain control. If the pain goes away your doc will wean you off the pain meds.

JanetinVirginia-no you are NOT a wimp! We go through a lot of h@##ish treatments on this journey, so it's not surprising that we end up a little skittish about something new. If you want to take a quarter pill a day for a few days, then half a pill for a while, and so forth, go ahead and do that. It won't hurt anything, and if you are more comfortable, that's important. There's no reason not to ease into this if you want to.

"I have come to believe that caring for myself is not self indulgent. Caring for myself is an act of survival." Audre Lorde Dx 3/9/2007, IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/15/2007 Lumpectomy: Right Surgery 3/29/2007 Lumpectomy: Left Radiation Therapy 4/10/2007 Breast Hormonal Therapy 10/5/2007 Hormonal Therapy 4/25/2008 Arimidex (anastrozole) Surgery 8/15/2008 Mastectomy: Left Surgery 6/21/2010 Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Nov 29, 2010 04:59PM ruthbru wrote:

Vegetables, I didn't know that they were SUPPOSED to taste good!!! Unless, of course, they are cooked in a cheese sauce or dipped in ranch dressing........Tongue out
"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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Nov 29, 2010 06:38PM JanetinVirginia wrote:

don23 & native mainer - Oh thank you so much for your kind words.  I'm just really scared and if I don't laugh I'll cry - so I try to find some humor on this journey.  I don't think I've ever taken 2 tylenols at one time in my whole life - and that includes after mastectomy - never filled the pain meds (but I had very little pain or I would have).  One glass of wine makes me tipsy & so on.  Therefore taking heavy duty pills is going to take some getting used to.  So far, having taken 1/4 a pill, I'm happy to report NO SIDE EFFECTS :):)   (laughing again) 

JP - I "met" you on another thread and my last Dexa put me into the osteoporosis. So, I'm with you on that worry.  Even tho I'm post menopause, the onc wanted me to take Tamox because of the bone issue, but the blood test results showed I would not metabolize it.   So, we're trying Arimidex and he has me on Vit D because that was low.   I've been reading about zometa & reclast (same drug ingredient) and that does show a lot of promise in rebuilding/protecting bones & added bonus of reducing bc recurrence as someone else said.  And, I don't think it has the same risks as fosamax and some of the others (which are different drugs).  Still researching and will ask at my next visit.

Dx 9/1/2010, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Nov 29, 2010 07:11PM cybermom wrote:

I know exactly how you feel - I too had it for a week or so before I started.  I am now on week 4 and so far so good -  no SE's.  I am taking it to hopefully shrink the tumor in order to do a lumpectomy opposed to a mastectomy.   Hopefully you will do ok on it.

Patricia F. Dx 10/14/2010, IDC, 2cm, Stage II, Grade 2, 0/0 nodes, ER+/PR+, HER2-
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Nov 29, 2010 08:05PM one-L wrote:

I have been taking Arimidex since March and my SEs did not start until I had been taking it for about 5 months.  There was no gradual onset of the SEs, it was just one morning I woke up and could hardly move my hands.  If I tried to pull the cover  over me in the night, my hands would scream.  Also, my knees hurt, but I was use to having knee pain.  Glad to say that the SEs have not gotten any worse.

I am also on a restricted diet, self inflicted, because I have gained 30 lbs since finishing chemo last December.  Glad to report that I have managed to lose 16 lbs, so I am on the right road with that issue.  I have just about cut all carbs and gluten out of my diet and now after reading some of the posts, maybe cutting the gluten from my diet has helped my joint pain.  I will give it a little more time before making a final judgement on that.

I am glad to hear that taking the AI will help shrink tumors and seems to be one of the first lines of defence when the cancer is spreading.  You would think that as much money that is being spent on BC that a cure would be in sight, but cancer is big business and there is lots of money to be made.  I hate to think that that is the reason, but I don't think we  will ever know for sure.

Oncotype DX -- 25, TC x 4, started 10/23/09, finished 12/24/09. Start radiation on 1/20, 33 treatments. Finished rads on 3/10/2010. Dx 7/21/2009, IDC, <1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Nov 29, 2010 08:53PM Enjoyful wrote:

Molly -

No change in appetite when I'm with friends.  I do try to eat more than I want so that they don't worry too much, but it's an effort.

Mainer -

Thank you for the info on dependence/addiction!  Does it make any sense to change up the pain meds periodically so that I don't need increasing amounts to feel the effects?  Or does it not make a difference?

BENGHAZI! Dx 9/2004, IDC, 1cm, Stage IIIA, Grade 2, 4/14 nodes, ER+/PR+, HER2- Dx 8/28/2009, IDC, 2cm, Stage IV, Grade 2, ER+/PR-, HER2-
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Dec 1, 2010 01:20PM NativeMainer wrote:

Pain meds are changed if troublesome side effects crop up--the most common with the narcotic pain meds is itching, the next most common is hallucinations.  When we change pain meds from one to another we calculate how much of one drug is equal in effect to the other and start at a dose that gives the same amount of pain control.  Sometimes a patient will be changed from one drug to a stronger one, becuase the milligram dosage will be smaller and that gives some patients a feeling of comfort if they are afraid of "too much" pain medication.  For instance, for every 10 mg of morphine, a patient can be given 6 mg of oxycodone and get the same level of pain relief, but at a "smaller" dose.  It's an illusion, because oxycodone is stronger than morphine. 

"I have come to believe that caring for myself is not self indulgent. Caring for myself is an act of survival." Audre Lorde Dx 3/9/2007, IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/15/2007 Lumpectomy: Right Surgery 3/29/2007 Lumpectomy: Left Radiation Therapy 4/10/2007 Breast Hormonal Therapy 10/5/2007 Hormonal Therapy 4/25/2008 Arimidex (anastrozole) Surgery 8/15/2008 Mastectomy: Left Surgery 6/21/2010 Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Dec 1, 2010 04:13PM SoCalLisa wrote:

the newsletter from Johns Hopkins today says they traced the

pain for those of us on arimidex as the inflammation of the fluid

of the lining of the tendons...hmmmm

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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Dec 1, 2010 06:00PM wenweb wrote:

SoCallLisa,  Is there a link to this very interesting info?  I have been having what I believe is tendon pain in my forearm since Sept and have an appt with an orthopedist on Friday which I would like to be able to relay to him.

Thanks 

You are stronger than you seem, braver than you believe, and smarter than you think you are. A.A. Milne Surgery 9/23/2009 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 11/18/2009 Breast Hormonal Therapy Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 1, 2010 06:50PM Enjoyful wrote:

I wonder why anti-inflammatories don't work, then?  Well, not for me.

BENGHAZI! Dx 9/2004, IDC, 1cm, Stage IIIA, Grade 2, 4/14 nodes, ER+/PR+, HER2- Dx 8/28/2009, IDC, 2cm, Stage IV, Grade 2, ER+/PR-, HER2-
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Dec 1, 2010 07:01PM one-L wrote:

SoCallLisa, that is interesting.  I take anti-inflammatories daily and as far as I know it hasn't made much difference, but maybe it has.  I am not going off of my daily dose to see if I would hurt more.  Maybe they should test us.

Oncotype DX -- 25, TC x 4, started 10/23/09, finished 12/24/09. Start radiation on 1/20, 33 treatments. Finished rads on 3/10/2010. Dx 7/21/2009, IDC, <1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Dec 1, 2010 08:03PM SoCalLisa wrote:

here is the link

http://www.hopkinsbreastcenter.org/artemis/201012/25.html

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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Dec 1, 2010 09:00PM karen1956 wrote:

Yes...its been documented for at least 3 years, that CTS is a side effect of AI's....I developed bilaterally on Arimidex and then on Aromasin developed bilateral dequervances tendonitis...I've had 2 surgeries on my right wrist and 1 on my left....my hand surgeon said it was some of the worst she had seen.  A friend of ours suggested that I see a rheumatologist when I was on the AI's,,,,I stopped taking them after 3 1/2 years in March....many of the side effects have lessened, but I'm still not where I was before Dx...but better than on them.....My onc keeps telling me that the AI's have as much benefit for me as chemo did, but he has given me his blessings (well sort of) to stay off the AI's but then says, just call him whenever I am ready to go back (not!!).  I think there is till so much that is not known about late effects of chemo or the AI's....

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Dec 1, 2010 09:11PM Medigal wrote:

So Call:  That is interesting what you wrote about the pain in the tendons of your forearm.  I have been on Arimidex for 7 years and suddenly this week I started experiencing a tightness in my upper arm and it is slightly painful if I try to stretch it.  Almost like I have a tight rubber band in the inside area from underarm to elbow. Nothing really looks swollen tho.  

It concerns me because it is only in the right upper arm the one where they took out the 27 nodes over 7 years ago.  Could this be some version of lymphedema starting??  I wear the Lymph bracelet and have protected that arm all these years and can't figure out what I could have done to cause this.  It is not really painful yet but I am concerned whether it will get worse.  I just wondered if any one else or yourself has had this happen to them?  Thanks for any info.

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Dec 1, 2010 09:28PM SoCalLisa wrote:

It was called

  tenosynovitis

guess you can google it

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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Dec 1, 2010 10:43PM molly52 wrote:

Following exerpt from article doesn't seem to rack up with my experience.  I am stage 1 and had tons of joint pain. 

Only one factor predicted whether women had pain-having later stage cancer. "If you have stage II or stage III cancer, you are more likely to have this pain than if you have stage I cancer,"  

Any stage 1s out there that had joint pain, or am I the only one?

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Dec 1, 2010 11:03PM SoCalLisa wrote:

All I do know is that when I finished up with the arimidex, most of it gradually went away

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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Dec 2, 2010 06:37AM NativeMainer wrote:

Anti-inflammatories don't work well for AI tendon pain becuase the drug doesn't get into the fluid around the tendons (or the fluid around the joints or spinal fluid for that matter).  Unfortunately, the best way to get medication into that area is to inject it directly--not a fun prospect (of course, I am extremely needle phobic). 

"I have come to believe that caring for myself is not self indulgent. Caring for myself is an act of survival." Audre Lorde Dx 3/9/2007, IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/15/2007 Lumpectomy: Right Surgery 3/29/2007 Lumpectomy: Left Radiation Therapy 4/10/2007 Breast Hormonal Therapy 10/5/2007 Hormonal Therapy 4/25/2008 Arimidex (anastrozole) Surgery 8/15/2008 Mastectomy: Left Surgery 6/21/2010 Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Dec 2, 2010 07:34AM Enjoyful wrote:

Oh!  That makes sense, Mainer.  Thank you!

Does anybody know if pain is a predictor of efficacy?  'Cause if it is, I'll be NED forever!

BENGHAZI! Dx 9/2004, IDC, 1cm, Stage IIIA, Grade 2, 4/14 nodes, ER+/PR+, HER2- Dx 8/28/2009, IDC, 2cm, Stage IV, Grade 2, ER+/PR-, HER2-
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Dec 2, 2010 08:18AM 0000000 wrote:

Hi all,

Met with my Med. Oncologist yesterday and he advised Arimidex but said it would increase my overall 10 year survival by 5%.  He gave me a print out with the stats on it.  Of couse every one is different and my tumor was 2cm, ER and PR + , Her2-, Histologic grade 2, 0/7 nodes neg. lumpectomy and SNB with biopsy track removal on Oct 20, 2010. No rads, No chemo and now I have decided no arimidex... I found this online and thought it was interesting

http://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformation/EnforcementActivitiesbyFDA/WarningLettersandNoticeofViolationLetterstoPharmaceuticalCompanies/UCM166192.pdf

The bottom line is the side effects are totally downplayed by the docs ; well, it's not their body.  I choose not to go this route because of the very high percentage of women (36% in some cases) who get very distressful and disturbing and painful side effects.  In the literature from the manufacture, they list the incidence as . .>10% because they don't want to give the actual percentage which is significantly higher than 10%.  It is just another way of deceiving the public.

Good luck to all of you as you made the very difficult decisions we are all faced with re: BC treatment.   I went thru a lot of agony and anxiety until I just decided to follow my gut and not take  Arimidex.  My doc is fine with that and  and was actually supportive...for the first time since diagnosis (IDC) in September I feel very positive about the future.  

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Dec 2, 2010 09:26AM don23 wrote:

molly52 - I am a stage 1 and have joint pain, too. Not sure what the stage has to do with it. We're still taking the same drug. Doesn't make sense to me. My pain is in my hips and somedays it is worse than others. I eat right and run three times a week. I just started doing strength training to see if that helps. I hope it does.

Dx 4/10/2009, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Dec 2, 2010 09:26AM SoCalLisa wrote:

Despite all the side effects, I am glad I did my time with arimidex..good to have finished, I have to say

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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Dec 2, 2010 01:07PM Lowrider54 wrote:

Free yourself from gluten for good ridance of the joint pain from Arimidex...honestly, it happens in about 4 days once you switch to gluten free.  Chex cereals, potato bread, Bisquick gluten free pancakes, and the regular supermarkets, including WallyWorld (WalMart) have many gluten free products - you don't have to eliminate all of it - just as much as you can...trust me, your knees will love you and whether taking it at an early stage or late stage like me - it works!  And...I made the best pie crust ever with the gluten free stuff - a flaky crusted pumpkin pie - even on the bottom...that was an accomplishment!   

I should start wearing a sandwich board as much as I mention this...LOL

Hugs...LowRider

Smile...it will make people wonder what you are up to...Initial dx 04/99 - CMF; 9/2009 bone mets Arimidex; 6/2010 Faslodex/Xgeva; 8/2011; abdominal wall invaded, ER/PR flipped to TN, Abraxane/Avastin//Xgeva 09/02/2011; 11/2011Xeloda/Avastin/Xgeva. Dx 9/16/2009, Stage IV, 5/25 nodes, mets, ER-/PR-, HER2-

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