Arimidex - Coping with the SE's

Sunflowers, I also think that having the privilege of getting older plus the accumulation of cancer treatments does lead to the tiredness. I was just talking to a good friend who is a colon cancer survivor; post treatment, NED, and she mentioned the hardest thing she has to deal with is that persistant tired feeling.

Dom23,

I had so weird eye problems...my eyelids would flip under (or inside) and would get stuck like that when I was taking showers.  It was the weirdest thing.  The first time it happened I called my husband because I couldn't get it to flip back and I wasn't quite sure what was happening.  I felt like my eyes were sunken and when I rubbed them in the shower the just flipped under.  It was WEIRD.  It only happened about 5 times.  It started about 3 weeks after starting A.  Good luck.  I hope they stop hurting! 

Good morning Ladies-

First of all, thanks for starting this thread.  I read through all the posts and was so happy to see that everyone realizes that while there are side effects to AI there are ways to cope.

I feel like yakking it up this morning, so I'm warning you this may be a long post!  Ha!  

I had the effectiveness of Arimidex-which I've only been on one month-proven to me in a very strange way.  When I was going through menopause-which I went through early, at 40, I would get bronchitis all the time.  If I even got the littlest virus, boom, it was bronchitis and I would be miserable.  It would happen 4-6 times a year.  I also had hot flahes, gained weight, yadda yadda. Because my estriadol levels were so low (less than 7) and FSH so high, my well meaning gyno put me on the vivelle path/prometrium.  I went on and off of it for about 2 1/2 years.  Last year from March 2009 to March 2010, I was on Fem Ring/prometrium for vag atrophy so bad I was cracking and bleeding.  It worked like a charm.  Coincindentally I went off of it right before my mammo in March, which ultimately gave me my bc dx.

Here's the thing.  I had all the symptoms of being so estrogen deficient for so long, I was pretty sure bc would be my least likely dx.  When I got my dx, I asked my surgeon how it was possible that someone with estrogen deficiency like mine for so long would get bc and he gave me an explanation that made so much sense...my body is highly sensitive to estrogen and reacts to anything that it feels is too much.  I know from my own body wisdom that even something as "localized" as the Fem Ring was too much-my breasts changed, I could feel them doing it during that year.

So my estrogen deficient symptoms have returned.  I have a bad case of bronchitis (which my onc tells me is exacerbated by lower white counts and radiation this time.) I have dry eyes and a dry vag to boot.  And I have hot flashes.  But you know what?  I know my Arimidex is working and I'm so happy!  I can deal with this stuff.  For what ever reason, this is the path my body was trying to tell me to be on even though it came with some problems.  I have osteopenia-so I'm working out with weights and doing bone building exercises like good old fashioned jumping jacks, skipping rope and playing basketball, plus getting in weird walk-jogs which make me look ridiculous but I don't care.  I'm eating much better, I'm getting "safe" sun, I'm taking my calcium and vit D supplements, fish oil, glucosomine and a strong B supplement.  I'm using a vitamin E suppository for the old girl downstairs 3 times a week.  I'm biking, spinning, swimming, gardening.

I went a little overboard on the exercise for three weeks and got run down, and yesterday, even though I had a fever and felt so bad, I realized that my body is adjusting and I'm going to have to really stay in tune with it to find the right mix.  I understand that there are some women who do not choose to do this and I respect them and their decision.  The one thing I have truly learned in this experience is that our bodies will signal the problem and then we have to do the best we can to help them along.  

There are no guarantees, that's for sure, and I realize each day I am very lucky to have some options in dealing with this.  So I'm going to try as hard as I can to work with the SE when they pop up and keep focused on each day as it comes my way.  Period.

Thanks for reading my big thesis on life this morning 

XO

Kim 

I've been on A now for over a year and yes there have been and still are side effects but nothing over the top.  The worst one that I find hard to deal with is it makes me feel so old and every joint, while some are a bit painfull, goes snap crackle and pop when I move.  My grandchildren find this quite amusing, but sometimes it is hard to deal with. I do take all the usual added vitamins etc and I think overall they do help.  Love n hugs. chrissyb

ps. I know the A is working as I'm NED at the moment....long may it last

YAY chrissyb - almost 7 year survivor - I'd say something's working. 

Thanks for the suggestion of eye drops. I am definitely going to give that a try.

Thanks Jo.

I was put on Zoladex and Arimidex three months ago.  Zoladex is a monthly injection that stops my ovaries from producing estrogen.  So I went from having lots of estrogen to nearly none in a period of about two weeks! 

My main SE was the sudden inability to sleep, and, when I did doze, I would wake with hot flashes every hour and a half (none during the day).  I asked for Ambien, and it gets me 3 or 4 hours but I still wake up hot every hour or so after that. On the advice of many of you, I moved my Arimidex from evening to morning, and I'm hoping that will help. Maybe Effexor would be more helpful than Ambien if it would diminish the night hot flahses.

I'm interested in whether anyone else had this double estrogen whammy and how you're coping.    

mtg- i definitely also experience the combo frequent urination/hot flash thing- there really is something to it but i'm not sure- for me part of it is that the hot flashes wake me up so then i notice i have to pee and it bothers me where normally i'd sleep through it for longer, but also, even during the day sometimes, having to pee brings on hot flashes! WHY?? I don't know but it's really consistently true...I try to stay away from it usually but the ativan will put me out for the duration, even if i have to stumble to the bathroom midway through the night...

Hi suepen.....another Aussie!!  yeahhhh

One note about effexor -- it is not an SSRI, and it has been found to be the safest med to take with tamoxifen.  As with all these meds, there is a hit and miss quality to them.

I am also on the zoladex/arimidex thing and have been having killer hot flashes, but in the last few days with cooler weather its been a bit better.  I'm wondering if this is a side effect that willimprove after summer.