For Arimidex (Anastrozole) users, new, past, and ongoing

PontiacPeggy

Thick?  Wavy?  Gee, that sounds lovely, ProudtoSpin  Glad that you had no hair loss.  Frankly, that SE would never have occurred to me.

ruthbru

I would say that most people do not have hair loss. Of the people I know personally (which is quite a few over the years), none has had hair issues. It is just normal that people who are having difficulties are the ones who would be talking about it.

lago

Also note that some of us would have hair loss anyway. My hair started to receded a bit several years before diagnosis.

proudtospin

not sure if I am playing with hair dif or not but I am seeing "waves" or kinks!  whatever it is hair and just because it is more grey, well fine with me.  I will confess that I stopped dying my hair as more and more grey appeared so that may be partly the reason for the new...waves  I do not care, I am lazy regarding hair!

PontiacPeggy

Proud, I like my blonde hair.  I don't care what the real color is, it will stay blonde as long as I'm willing to spend $9 every 6-8 weeks

Puffin2014

Don't remember where I found this, but it listed the side effects by frequency:

Very common (affect more than 1 in 10 people)

headache

hot flushes

nausea

joint pain or stiffness

feeling weak

bone loss

common (affects 1 to 10 people in 100)

loss of appetite

higher cholesterol

feeling sleepy

carpal tunnel syndrome (tingling, pain, coldness, weakness in parts of hand)

tickling, tingling or numbness of skin

diarrhea

vomiting

hair thinning/loss

vaginal dryness

muscle pain

uncommon (affects 1 to 10 people in 1,000)

change in liver function tests

hives

trigger finger

PontiacPeggy

Interesting list, Puffin.  Hope I don't experience any of them

jeaniebeanie1200

ok ladies,,,,  I am going to ask MO to switch me,,,, taking Anastrozal and joint paint in knees and hips very bad, headaches, nausea,fuzzy head, fatigue, carpel tunnel, higher cholesterol,    I hope he lets mr take a break( scary to go off meds) but want to feel normal again,,,,,

laurie2025

I have a question regarding Anastrozole use after diep flap reconstruction surgery.  I had this surgery on 10-3.  On my 'discharge instructions' it told me to discontinue the Anastrozole until told to start again by the Physician.  I asked him about it today, and he said I should be taking it and that shouldn't have been on my instructions.

Anyone know anything about discontinuing Anastrozole or Arimidex after reconstruction?  I'm feeling a bit confused.

Thank you.

ruthbru

I didn't have reconstruction, but had a hernia repair surgery while on Arimidex. I asked if I needed to stop taking it before the surgery & the doctor said there would be no reason to do so.

lago

I took my Anastrozole (and Herceptin) all through my exchange surgery, revision with nipple reconstruction.

proudtospin

let me think, well I had my foot surgery while on my AL, truthfully, I find docs outside of the specialty have no clue what the med is or for!

Dogsneverlie

Pontiac - love your comment about the $9 every 6 weeks!  I use auburn colors and plan to continue as well - finally got over the fear of doing it myself about five years ago and so glad I do it at home, so easy and so much quicker and looks great every time!

jeaniebeanie1200

I have never stopped taking my anastrozal for any of my 7 reconstruction surgeries ,,,,, J

PontiacPeggy

DogsNeverLie, since I hate going to the beauty shop, I've always colored my own hair (even back in the 60s when I was in college).  Once I had highlights done and it took FOREVER.  So that didn't happen again.  It DOES look great every time.  Hubby LOVES men's hair places where he can get a shave etc.  I just don't get it

lago

I don't like the "beauty parlor" pamper either but I'm just not good with coloring hair. My stylist/colorist is really fast though but the processing is what takes all the time. Also after 15 years with  the same stylist we've become "friends" on a professional level. 

justmejanis

I admit I still color my hair.  With the thinning problem I am sure it doesn't help but not yet willing to go all grey.  I  have been coloring for at least 25 years.  I color it as close to my natural hair color as I can, which is a medium-dark brown. 

Anyone who struggles with an AI should take a break (ONLY if your MO approves).  Sometimes that helps to know if the SE's are really from the med.  I know my joint pain all but vanished every time I went off the Anastrazole.  So I am really curious about the Lestrazole.  Listed SE's are pretty much the same, but maybe I will respond differently to this one.

PontiacPeggy

JustMeJanis, why would I want to know if I have grey hair??  TMI!!!

My MO said that Arimidex and Femara are like Coke and Pepsi.  Virtually identical - virtually, but not quite.  For him it was a toss up which one I took, so Arimidex it was.  Hope you have good luck on Lestrazole.

Kathy044

Proud I think you have it and that this is simply a confusion over the words "hormone therapy". I believe it was standard to suggest stopping ERT or HRT if having surgery, however, ever since the WHI study discredited the idea of 'replacing' hormones at menopause the therapy started to be called ET or HT instead.

Kathy

Beachlady28

10/25/14

Hi  to all,

I am starting Anastrozole today and an concerned about some of the side effects listed on the pamphlet from the pharmacy.  There is a long list of possible side effects but the ones that worry me are: constipation, diarrhea, nausea, vomitting, vaginal bleeding, hair thinning, arm and leg swelling.  Has anyone had any of these side effects, if so how did you handle them? 

Thank for any advice you can give.

justmejanis

Beachlady welcome, and I hope you will stick around and find lots of helpful advice here.  Not to mention getting to know these terrific ladies!  It is really important to not let these SE's listed scare you.  All of the SE's are possible but most are not common.  Many women sail through the five year therapy with no SE's at all.  Others have only one or two.  So please know that while SE's are possible, most are manageable and the meds are so important in the battle against the cancer.  As most women here will tell you, they would rather deal with the SE's than deal with a return of the cancer.  There are no guarantees of course, but the meds are so important. 

That being said I hope you sail through your five year course with ease.  Always remember the little white pill is doing a very big job!

You will find so much advice here should you have any problems.  My biggest issue was joint pain, which didn't develop until many months into taking Anastrazole.  You will find being active and exercise help so much, and pay attention to a healthy diet. 

Wishing you much luck in this part of your journey!

ruthbru

Welcome Beachlady! Just take it like you'd take any other vitamin/pill etc. and then go on with your day. Like any other drug, legally they have to list every possible SE that could ever happen.....but usually don't. Most people do fine. Plan to be one of them & if you do run into difficulties, the ladies here will have lots of tips on how to deal with them. Like Janis says, staying active & exercise are really important; not only in dealing with potential Arimidex SEs, but also for good health in general.

lago

Beachlady:

• constipation-yes some but I have IBS diagnosis since before BC diagnosis. Also was tossed into menopause…this is a common issue. I control with diet and the occasional dried fruit.
• diarrhea-nope
• nausea-nope
• vomiting-nope
• vaginal bleeding-nope
• hair thinning-yes but again I had this issue as I got deeper into peri-menopause. I use women's Minoxodil and it seems to keep it at bay.
• arm and leg swelling-I take a small about of diuretic but not sure if the drug is causing this or if the initial bmx surgery did. My legs  have never been the same since that first surgery.

Note: Some of these side effects they list are not as common. Even hair thinning is not one of the more common ones. I too was so scared to try this but if you have issues:

• Try a different AI. I was on Anastrozole for 3 years before I had to switch to Exemestane (and I'm doing great on the new drug)
• Tamoxifen is an option
• Quit all together

You don't know till you try.

naiviv

Hello all,

Like to chime in on an issue we discussed briefly about AI's and their effectiveness on overweight women.

I just saw my MO and here is what she had to say.  This is her opinion, but I wanted to share.

1. She was aware of study and it raised more questions than were answered. The study took owerweight women in general.  It did not differentiate with sub categories dealing with stage,grade,age,her2 statuses..etc... She was angered at the fact that those studies scare her patients when all the answers aren't in.  But she did go on to add that overweight and lack of exercise were not good for us either and her theory goes to more than just estrogen levels. She explained that exercise and healthy eating increases our immune system, oxygenates our blood, helps our body's own defense mechanisms come into play to destroy errant cells before they can become something else. Especially in those of us that are considered enviromentals with no family history.

2. She also went on to say that she has patients who are at their ideal weight and exercise religiously who still have gotten cancer  and knows that their are obese and super obese women who will never get it.  She believes genetics is playing a bigger role than just brca 1 and 2's.  There are more questions than answers.

3. Finally she said that the AI question is being addressed at my cancer center and a study or informal voluntary study is being considered amongst the MO's . Apparently Exemestrane may be able to help destroy more estrogen than the other 2. It is not usually given first to ER + patients.  But is given if ER+and have a recurrence or mets.  Of if can't tolereate the other AI's. It has an added steroidal type ingredient, that is beneficial for the joint aches the AI's cause.  They may begin to offer their over weight patients  a higher dose of Anastrozole or change to exemestane.

4. When I see her in November we shall discuss this more and see if I want to try exemestane or higher dose.  Tamoxifen and AI's dosages were originally tested and dosage recommended based on a weight of up to 150 height of 5'7".( this is the case for most pills)   I am definitely over this weight.

5. My decision today... It's definitely time to lose some weight for me. I have begun exercising through PT and my joints aches did feel better. I stopped this week due to recon surgery, but my MO gave me a new script so I can continue as soon as breast are healed. But I know it's time to start on my own.  I've lost it before, I just had a major pity party when my May recon attempt failed and ate to feel better. Just gonna have to work harder because menopause and these pills makes it harder.

Sorry for the long discourse, but I believe it was worth sharing for those of us who may have concerns for our weight. If any of you ask your MO's, I'd like to hear their opinions.

Thanks

Vivian

Nash54

Peggy my onc used the same analogy of coke vs Pepsi.  I said I preferred coke, so wonder which one I'll get 

PontiacPeggy

Nash, the one YOUR MO considers Coke  Interesting that this analogy has made the rounds of oncs, isn't it?  

laurie2025

Ok, thank you all for sharing regarding the medication after surgery!!

208sandy

Naiviv - thanks for your MO's input on exemestane - worth talking to my MO re this.

doxie

Interesting about arimidex vs aromasin.  I was on arimidex first for 6 months, then switched to aromasin due to an eye SE.  (Made no difference.)  My aches increased for a few months.  Now 2 years on it, I have only minimal aches I can blame on aromasin, and then only maybe.  Was my body taking a while to adjust to an estrogen-less environment over this time?  I think that is part of why we have SEs initially.   

I'm very sensitive to steroids.  I think switching to aromasin caused me to perk up a bit mentally.  

lago

I'm not overweight but I can definitely say that on Anastrozole I was in so much discomfort that hurt to stand up straight…

on Exemestane I have no back, neck or shoulder pain!