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

Notbuyingit

i have to agree with Ruthbru - I decided long ago a sleep aide is better than not sleeping - it certainly doesn't take away all the aches & pains - but you are more rested & stronger & more apt to be active.

ohiofan

Two Hobbies, 

 I bought light-blocking shades at Lowe's.  I really like them.  I also have light blocking curtains in the bathroom which is in the front of the house.  (Must have been designed by a man.)  They came from Country Curtains.  Not pretty, but I needed functional.  A young man bought the house across the street and "the guys" hang out in the driveway looking at cars. sigh....

Ohio

lago

Mask is cheaper though and you can travel with it 

TwoHobbies

Lago, that's why I got the mask. I decided I can always use it traveling.  I think I still want shades though, and part of it is I hate the mini blinds in my room and they must go, but I hate to pull the curtains every day back and forth, so I wanted new shades anyway.  I just want them to be light-blockers now!

Ohio I did not check Lowe's, but I need to make a trip for a few more bags of mulch so I will stop in and see if they have some.  Thanks for the suggestion! 

BB I haven't heard anything about the 10 years for AIs except a few months ago I saw they were hoping to have some test that would help determine if people should continue on or not.  You've got a ways to go so they'll surely have more of an opinion when you get to 5 years.  As for the intimacy related effects, I guess I would say I couldn't tell you because I've had chemo, am being shot into menopause, so I don't know how much effect each of those have as opposed to anastrazole alone, but I know the chemo and induced menopause do have effects on me but so far not totally insurmountable.  

lago

BosumBlues my onc & NP keep hinting that I might be on it for 10 years. The will not say for sure till the studies are done but right now they say the studies are pointing in that direction. I do believe it is being offered to those that are that have currently finished 5 years and are considered high rise for recurrence. Although I had no nodes my tumor is quite large, grade 3 etc and therefore I am considered high risk for recurrence. (Granted I thought I was moderate risk  but my onc says high risk).

I've only been on AI for 3 years now so we'll see when the 5 years is up.

Spookiesmom

I was told from the beginning, 2 years ago, 10 years on the AI. 

Golden01

ASCO updated their guidelines for options on how long therapy should last in May of this year. The recommendations depend on a number of different factors, take a look at the ASCO website for the summary and to link to the full PDF of the guidelines to see what might apply in your situation. Here's the link: http://www.asco.org/quality-guidelines/adjuvant-e...

ohiofan

My cousin was 31 when dx and took Tamox for 5 years and AI another 5.  She has been off for 2 years.  I had a hysterectomy at 39, so I wonder if that makes a difference?  

Stupid computer (or me!) won't let me hyperlink!!  sigh........

sherry67

I was on tamoxifen for the last 2.5y and just started arimidex July 11 and my MO said I will be on it for 7years.  

Janett2014

Well I guess I need to face the ten-year plan. I've been telling people (and myself!) that I would be on Arimidex for five years. It appears that ten is more likely. As long as it works, I'm ok with that. 

Spookiesmom

Had hyst. 30 years ago. Must depend on your individual case. 

linda505

From reading the linked info it looks like 5 for me at this time - as in my case, postmenopausal, it says I should be offered one of three options

10 year tamoxifen, or 5 years Ai, or 5 years tamox and 5 years Ai - says there is insufficient data to recommend an ai for more than 5 years at this time   This is on page 2 of the PDF under "recommendations"  Roman numeral II   My MO has prescribed Armidex and said 5 years unless new recommendations come out in those 5 years.

lago

According to the links it will be 5 years for me but the studies should be final when I'm at my 5 years so I know it could be 10

ohiofan

lago,  I'm a Grade3, also.

Thanks for the info.  I guess we will do whatever gives us the best odds.

Must get this laptop fixed..........

lago

ohiofan but you do have a smaller tumor so maybe not. I kinda had a ginormous one. The size seems to be what really freaks my onc out. Over 5cm scares them 

ruthbru

This is what the 2014 ASCO recommendations say:

"For women diagnosed with hormone-receptor-positive breast cancer, the updated ASCO guidelines recommend:

• newly diagnosed postmenopausal women have several options:
• take tamoxifen for 10 years
• take an aromatase inhibitor for 5 years; right now, there isn’t enough evidence to recommend taking an aromatase inhibitor for 10 years. "

 

Janett2014

Well good. Maybe it's five years for me after all. Let's see: just four years and ten months to go! (That's better than nine years and ten months though.)

MENA1954

Thanks for all your replies. I have always had trouble sleeping, way before BC. I used to take a xanax at night just to be able to get some ZZZZZ!  It took me 2 yrs. to finally not feel any SE after  stopping it.  I have tried everything, Melatonin, valerian, chamomile, benadryl....and nothing really helps. 

The sleeping pill takes over 2 hrs. to kick in and 4 hrs. later I am awake again!  

The only time I really rested and woke up feeling great was after my surgery. 8 hr. of blissfulll oblivion from anesthesia! 

I was reading an article that said that 40 to 50% of women who had or have BC suffer from insomnia!

I must admit that my sleep hygiene is not the best. I watch TV in bed, read in bed, use my smart phone in bed. 

But if I don't watch TV before turning in, I really will not fall asleep!

I even moved to the guest bedroom because I used to blame my husband that his snoring was what was keeping me awake. I guess that was NOT it.!

Yesterday I felt amazing, I had a long day in NYC first helping my daughter pick out a wedding dress  at Kleinfeld, then seeing a Parody of 50 Shades of Gray, then dinner with friends.

Today I don't feel well at all.... dizzy, short of breath, feel like I am going to faint, bad migranie....

Lately it seems like some  days I feel good , some days not so good, but most days I feel awful!

Sorry I am venting, but I feel only someone going through it can show  empathy.

Filomena 

ruthbru

I imagine more definitive recommendations will come out as time goes along (but I thought that in 2007 also!)....but I think for anyone who is post-menopausal, it will always be a case-by-case thing.....not a blanket statement.

Bren58

Friday I went to the liquor store to buy gin for the raisins. They only had big bottles on the shelf so I asked the guy working there if they had smaller bottles. He asked if I wanted it for drinking or cooking. I said I actually wanted it to pour over golden raisins, and he said "oh, my grandma does that for her arthritis!" Then he showed me to where the smaller bottles were and told me a decent but no too expensive brand to buy. I was just so surprised that he knew what I was talking about and he wasn't that old, maybe late 20's.

Mena, I do the xanax thing at night to sleep also. That's the only time I take it and it is about the only thing that helps. Melatonin doesn't,and sleeping pills either leave me with a headache or a horrible metallic taste in my mouth the whole next day. I have a sleep mask, but i usually only use it if I wake up just as it is getting light and want to go back to sleep for a bit. Not on the days I have to work though

I have had a rough time just getting through one year of AI, I can't imagine 9 more! I'm not even sure I will make 5.

lago

Bren try a different AI. This last year was tough on me mostly due to what it was doing to me mentally (I could deal with the back/neck/shoulder pain. I have a pretty high tolerance). I was ready to quit. Exemestaine (Generic Aromasin) so far has been like night and day.

sweetandspecial

Bosum - I had been married 30 years and was already post-menopausal prior to BC but hadn't really had any sexual side effects from menopause (except perhaps I was actually MORE willing and eager - weird, huh?).  Probably TMI, but Arimidex has stolen every bit of natural sexual lubrication from me, so yes, it has affected my level of intimacy with my husband.  Besides the lubrication issue, there is simply no desire for me with no estrogen production.  DH is incredibly understanding and supportive though, so our relationship is still going strong on other levels.  Hopefully this too shall pass and I'll regain some of what was lost when I'm able to stop this wonderful, awful pill.

Mena - I've had insomnia for 7-8 years (will be 53 in a couple of weeks).  I tried all sorts of OTC sleep aids and the only thing that really worked for me was finally getting a prescription for Ambien 10mg.  I fall asleep fairly quickly, stay asleep pretty well and don't have a sleep aid hangover in the morning.  I also supplement it with 3mg of melatonin (PCP approved up to 9mg melatonin with the Ambien if necessary).

lihuejan

Jo thank you for your insight, I have been on arimidex a month, and the truth is I have not been completely compliant, while I do take various other drugs for the se's ...it was the elevated B/P that concerns me the most, because in my mind cardiomyopathy was worst than cancer. But I know its crazy thinking.  I will put your manta on my pill box. and read each eveing when I need to take arimidex.

lihuejan

Mena.

I take ambien to sleep. Effexor for  hot  flashes, and a psycho stimulant for the brain fogginess, and lethargy. they all have help...still have bad days and some times I just don't feel like taking the arimidex...But at least I can go to work now, Which does my mental status a lot of good.

Notbuyingit

i also like the generic for Ambien - Zolpidem as a sleep aid - works the best of what i've tried. Currently i am using the leftovers of what they gave me during chemo - lorazepam - not as effective.

good news about the 5 years - tho 5 years from now they will prob change their mind - I will just see how it goes...not planning on putting up with too many SE's on top of what i'm already dealing with - quality of life & all that. But trying to have a positive attitude.

cloudhands34

Hi.  I have used Arimidex for two months but this is my first therapy.  They are trying to shrink the tumor so I can have breast conserving surgery.  I saw oncologist a month ago and he says the tumor is shrinking and the swollen lymph node is no longer palpable.  He said keep taking the pill  and come back in three months. 

Has anyone used TENS unit for side effects of awful leg pain from ankle to knees and in hips (just started) and hand pain and cramps.  I'm using Advil  ( with omeprazole to protect stomach) but don't want to get an ulcer.  

I am a nurse and have tried  topical Volataren, methyl salicylate patches, cold and heat.  

Any ideas would be appreciated. 

proudtospin

ruth, thanks for clarifying the recommendations, I just ended my 5 years and the MO said that was fine for me so good to see this report

oh yeah, BP is down about 20 to 30 points and talking to BP stuff

ruthbru

A couple more 'natural' things that may help with some SEs:

*quinine can help with leg/arm cramps....so try drinking tonic water, which has quinine as an ingredient (you may wish to add a drop of the left over gin )

* 2-3 ounces of dark chocolate (and I mean really dark, at least 70% cocoa) eaten every day has been shown to lower blood pressure for some people (including me)

sweetandspecial

BB - It's the lack of desire that bothers me the most.  There are all sorts of things you can use for lubrication but it's really hard for me to force myself to be the least bit interested right now.  I do keep several things on hand just in case though........

PinkCarn

I am 4 days post rads; no chemo. I started Amiridex a week before the end of rads. I am still very tired by somewhere between 11am and 1pm. I am working from home and getting by that way. I would like some feedback from ladies who have been through rads and Amiridex on your experience. At this point I think my fatigue is probably a result of both and still maybe a bit from surrey (May 7, May 12). Specifically how soon post rads did you begin to see some improvement and how long until you felt at 100%?