Anyone taking Arimidex with little or no side effects?

Anonymous

If you are out there, I would love to hear from you. Thank you for your help.

Everlastpink

Hi Nancy,

I am on my 4th month of Arimidex and doing pretty well.  I am 46 and just had my ovaries/tubes removed.  I had already been experiencing some menopausal things due to that surgery.  What the Arimidex does to me is makes me stiff in the morning when I first get up, or if I sit in one position too long.  But once I get moving in the morning I am ok and I need to remember to get up and stretch when I am at the computer.  Also, if I don't exercise every day I am more stiff, so that is now a critical thing.  But it's not too bad, no pain, just stiffness.

The only other side effect I have noticed is forgetfulness, poor memory, so I just have to write myself notes!  I even email myself reminders now!  LOL! 

So far, so good.  I think everyone is different, and if Arimidex has too many s/e's remember there are other things to try.

TXBadboob

I have been on Arimidex for a month, and so far no SEs other than a little joint pain in a different area every day.  Also the stiffness from sitting too long in one place as Katherine described.  Remember that these SEs could also be contributed to the evil estrogen being eliminated from our bodies:)

  My onc said if I could not handle the SEs from Arimidex, there are others like Femara, and some people handle one better than the other.

Hope this helps,

Deen

sprph

yesterday 7/23/ was my 5 year disease free, aniversary, yea to me!! I havebeen on arimidex since that day and can't really say I have any side effects whatsoever of the arimidex, my bone density thinned a little to osteopenia initially, but take boniva and itis back to normal. 

Marple

I'm on arimidex and more concerned about the long term side effects........which of course I won't know about till time has passed.  I'll be year 3 on it this fall.

Edit to add........I hope one of the long term side effects is "it's worked".

dswope

Hello ladies,

I am just getting started with the chemo part of my treatment, but will be taking an aromatase inhibitor after the CMF is complete.  Would love any info I can get on arimidex and femera.  My onc doesn't seem to think it makes a difference which one I take.  That's a little disconcerting to me.  I do understand however that femera, because it is a brand name, is very expensive.  Also, does the dx make a difference in the aromatase inhibitor they describe? 

Knowledge is power with this disease!

Thanks in advance for your help.

dswope

sprph.

WOW!  How many of us there must be looking at that 5 years as a lifetime right now.  Congratulations!!!!!  So, is this the end of your treatment as far as you know?

Oh happy day!

FACECRAFTER

I just started back on Arimidex. I was on it a while ago, and the few SE's I had were more than manageable.  I had hot flashes mainly.  I can't blame my poor memory on it, because menopause has caused that!!   So far, I have no SE's this time, but it has only been a week.  So I'll wait and see.  JUDY

Lindissima

Nancy,

I've been on Arimedex for 6 weeks now, and so far, so good.  Just mild hot flashes, which I'm happy about because it shows the pills are working to lower my estrogen.

Two weeks before going on the Arimedex, a nutritionist advised me to start taking 4000 units of omega 3 fish oils, 2000 units of Vit D3(my levels were very low), 2000 units of calcium plus magnesium and something called Ostera.  I'm also on an anti-inflamatory diet: lots of greens, vegetablses, fish, fruit.  Very limited dairy, sugar, meat and no processed foods.  I've managed to lose 5 lbs in these past few weeks, though I need to lose 40 more!

After a year's absence, I'm back to spinning, doing light weights, swimming and hiking with no ill effects. 

I am keeping my fingers crossed, as I've heard that SE's can kick in after a few months.  Good luck!

swimangel72

I've been on Arimidex for a little over a year now - I do have some bone and joint aches (which seem worse during rainy days) but they are in the same locations I had before BC (in my arthritic hip mostly). Other than that - I can't blame Arimidex on anything else. Hope this info helps!

NativeMainer

I've been on Arimidex since last October.  I have some hot flashes, annoying but not bothersome.  I was borderline in menopause by lab work when I started the lupron/arimidex, so I can't say for sure if the hot flashes are from arimidedex, lupron, or mother nature.  What ever the cause, I usually have one around 8:30 am, and a few in the evening around 6-8 pm.  I occasionally have one a little while after going to bed.  I have some others here and there, but not often.  I started out taking neurontin to help control them, but have pretty much weaned off them with no change in the hot flashes.  I have noticed that a glass of wine will trigger one, as will eating something with hot spices. 

sprph

I am afraid to go off arimidex, even tho it is 5years , I go to doc next week, I am sure he will say "there are no studies to indicate it has benefit past 5 years" but heck, what is the harm in staying on it.

Sue-61

I am post menopausal anyway and have been on Arimidex since the end of Feb with no side effects that I know of. I did not have a difficult menopause as I recall: some hot flashes maybe.

Arimidex is PRICE-Y. It is a brand name and there is no generic. My health plan leaves me with a 30% copay and the cost is nearly $90/mo for me. Astra Zeneca, the manufacturer, has a web site and option for some freebies if the drug is not covered under your health plan. 

A friend just finished 5 years on Arimidex, even had a couple of positive nodes!, and is NED. 

hmm

I have been taking Arimidex since mid December of 09......so far so good................. no problems and no weight gain. Right now MD Anderson is having their patients stay on it longer than 5 years.....guess they feel it is beneficial to do so ( at least that was what they indicated)............. who knows what the plan will be at a later date. My thoughts are that I will worry about that when the time arrives.

thegoodfight

I have been taking it for about three months now with very little problem.  I was achy, but I have increased my exercise and added other forms for strengthening and it seems to have helped a lot

Kay-kay

Today I discussed ovary removal (Oophoectomy) with my Onc.  However, after researching the risks (lung Cancer & Dementia)--I believe I will go back to Arimidex or Femara.  Decisions, decisions...

pj12

Hi,

I have been on Arimidex for 6 weeks.  Mild hot flashes (new) and some joint pain (old) so not much to complain about... except the cost.  I am happy to take the pill every morning as it makes me feel like I am doing something to help myself.

Pam 

shulamis49

Hi, I was on arimidex for 5 years, just got off it this past May. No side effects except the combo of the arimidex and my cholesterol medicine made my fingers very stiff. Doc changed my Lipitor and I was fine. Good luck to you!

Annabella58

Hi, have been on arimidex for 7 months, some achies and stiffness, but most vanishes with exercise.  I have to say that I think they should prescribe exercise with arimidex.

I was horrified to also read  LUNG CANCER??? is a SE of oopharectomy?  I had heard this one before, ran it by my onc, my OB/GYN and both poo poohed it as a wives' tale and that there was no evidence to support that at all.  To be super sure, I asked oncology at Sloane Kettering.  Same answer.  No truth in it.  On the strength of this, I went ahead with it.

I do have to add that I know many ladies in my mom's generation that had both ops and no one got dementia or lung cancer.  They didn't get BC either from excess estrogen, like I did .

Kay-kay

Anniealso,

Question = Why did these ladies have the op if their cancer was not estrogen positive? Please advise. 

Annabella58

Hi Kay-Kay (cute name!)

As I understood it from my onc and my friends in my mom's group, it was offered to them, almost as a matter of course.  Those were the days when women got HRT and these operations routinely.  They just blindly did whatever was advised I guess?  Seems crazy to us now.  Most of them did not get the ops due to cancer....they got it because they were "inconvenienced" either by heavy periods, uterine issues, just to be done with it all.  Then they got put on HRT.  Apparently this was common, back in the day.  Both my mom and my MIL got "convenience" hysterectomies/oopharectomies as a matter of course and got stuck on HRT.  One developed BC later in life, (heavy smoker and HRT they told her) one is going strong.  Two of their friends who got these surgeries are also AOK.  All these ladies are in their 70s!!  One lady did have early stage uterine cancer and that is why she got it.  But no ones' bones crumbled to dust, no ones' face dropped into wrinkles, and more importantly, no one got any other cancers.

Out of this personal group of 4, no one has developed dementia or lung cancer.  When I asked  on the lung cancer issue (BIGGIE for me, I have lung nodules that they watch already) they told me that in no way would they even consider an operation for a woman who'd had breast cancer.  There are apparently some studies out there, but they were followed up and no evidence or link was substantiated in either lung cancer and/or dementia.  I was told it turned out to be a flag that folded completely.  Good news for me in the dementia arena as my dad had it.  Didn't want to be a one lunged looney old lady. 

Not to say all of this stuff wouldn't drive us to dementia in the first place.............jk.

so no worries.  The operation itself is rather easy, the sitting around after it to heal is a drag.  And I am utterly delighted the little cancer bombs are gone and I don't have to wait for the other shoe to drop.

Annabella58

oops: unclear there, they said that "in no way would they even consider an operation like this if there were any truth to that whatsoever,  for a woman who'd had breast cancer.  I was told that was just riduculous.

hope this helps ease minds.

xo

my3girls

Glad to see so many of you that had very few problems with arimidex. I was not so lucky. I was on for over 8 months. For the first 3 months, hardly any symptoms. Then they started, and never stopped. The pain in my joints were at times hard to take. The stiffness when I got up from my desk or out of bed. I was tired allot. I exercise about 5 days a week.  I wouldn't say it made a big difference, but it helped some. I just didn't feel "very good" and couldn't handle the pain (mind you, my tolerance for pain is very high).  When going thru the list of s/e for this drug, I seemed to have most of them. After 8  mos...I told my OC, I wanted to stop it. She then gave me a 5 week break, and started me on Aromatase (sp?) and that only lasted 1 month.  The symptoms were more severe and started after 2 weeks.  I was so tired, I could hardly get out of bed for work..but of course I did.  She wanted to start me on the femera...I said...two tries were enough.  I am taking a small break. She gave me a scrip for tamox.  I was on that for a year, until my hysterectomy.

The AI's are all fairly new, with little information of the long term s/e. That also worried me.  At least the tamoxafin has been around awhile and has proven studes.  My OC has said that now, they are looking at keeping women on AI's and Tamoxifin for 10 YEARS, instead of just 5.

All the best to everyone on your journeys...and here is to pain free living for us all!

Lisa

hrf

In my case I had bilateral salpingo oopherectomy because I am BRCA2+ and carry I higher risk of ovarian cancer. It was done with my first dx of bc (triple negative). Four years later I have a second dx of bc but this time ES+/PR+ even though my ovaries were removed. Makes no sense to me.

I found out yesterday from my med onc that she wants me to start on Arimidex instead of the Tamoxifen which she had originally suggested and even gave me a script for. I was very happy to read the postings here where the majority of you said that SEs were manageable and tolerable. I was wondering about the bone issue - how are you doing in that area and are any of you taking supplements like Fosamax, Boniva, or having Zometa infusions......Also any sexual side effects????

my3girls

HRF, sorry about your 2nd dx! Completely different too?

I am not sure I can comment on the sexual s/e's. I did see a decrease in libido, but I also had the hysterctomy shortly before starting the Arimidex.  I did take supplements to help my bones, as in calcium with D.

Good luck to you...I wish you ZERO s/e's!

Lisa

hrf

Thanks, Lisa. Yes, the second dx was a totally different pathology. Sorry you had trouble with the SEs but I was pleased to read that for some, it was manageable. Guess I just have to try it and see what happens.  Helen

Kay-kay

Anniealso,

I'm grateful for your response and compassion. I am still hesitant about the Ooph, and my Onc advised me to complete my own research then decide.  I'm in my 30's and my journey began nearly 11 years (including a five-year remission).  I'm overwhelmed!

After the bilateral mastectomy, RIBP, LE, Honer's, three rounds of chemo, two rounds of Rad, and scans galore--I feel extremely over-burdened with BC the surgeries, the meds and s/e. 

My Onc says I may stop chemo after my August treatment.  However, I will continue Tykerb and add Femara or Arimidex and consider the Ooph. Where do I go from here? I feel as if I have little to no control.

May I say --Why me... without sounding selfish?   

Annabella58

Oh kay-kay, what a load you've had to deal with!!! Heck yes, you should say why me, and shout it....because this stupid disease is so not fair.  but.........you will win in the end, my dear I am sure.

I don't know about Femara, except to say that some have some SEs and some do not.  However, have heard positive things about it keeping recurrences at bay.

Arimidex has so far been pretty good to me....I take 1200 mg. of omega 3s daily along with 1500 mg. of calcium and 1000 D3 for the old bones.  Add in some exercise and so far, so good.  Sure, I'm stiff and achey, but so what.  I am here to complain of being stiff and achey.

the ooph was a non issue, non brainer for me, personally.  I had been on tamoxifen for five years for a previous cancer in 2001, so had exposure to that.   I had so much estrogen.  I was done with having children.  We do continue to make estrogen in our adrenal glands and our bodily fat, so you could still get some there.  However, the ooph could only help me reduce it, and at 53 I was nowhere near menopause.  Nowhere.  So I felt it was one way to reduce the things I could control.  You are very young, so I can see why you would hesitate.  I'm an old lady (53) and my daughter is all grown up.  If you chose that route (and of course, there are no guarantees, which would help to make decisions), you could always freeze some eggs ahead of time.  I have three frozen myself.  Or, you could adopt.  My cousins are adopted and they always held it over our heads as in "Nyah, nyah, we were chosen, specially, you just got born"...so we always saw it as a great option.  There are surrogates, gestational surrogates, so many options.  You don't say if you are done with your family, starting a family, non family oriented, but whatever you feel or want, it should all have a say in your decision.  It's not one to jump into for sure, thought the recovery is really nothing comparing it to a mastectomy.

It sounds as though, despite all you've been though, that you are on the end lap of the winners' race.....of course you feel like this.  It is good to take a little break if you can manage it, from all things boobcancerish for awhile when you get a break in the txtments.  For your heads' sake.

You have done great research (tho that can be upsetting and exhaustive in itself); had good treatments, done all that you can to get yourself healthy.  You deserve a break in this, sweetie.

Take care of you!!!

my3girls

(((((((Kay-Kay))))))))))))), hugs to you dear, you have endured so much!

hrf

Kay-Kay, you don't sound selfish at all. Go ahead and ask all you want. Wish we had answers. But we are all here to support each other.

Annabella58

Kay-Kay:

I did a little more scrounging around with some more medicos and discovered the source of your worries is a very small study that did cite some link from bc to lung cancer.

It was deemed insufficient evidence and disregarded in general by medical community as non valid...I hope this helps some.

My personal belief, shared by others, drs. included, is that this was bc that had actually spread to lung lining already, therefore not to be concerned about.

Good luck, sweetie. ((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))))))))))))))