Arimidex - Coping with the SE's

Elizabeth1889

ruthbru, Thank you so much for describing the crisis fight mode.  I am now dealing with the very strange feeling of almost regretting that my active treatments are over.  I certainly did not like my treatments, but I felt very "alive" while undergoing surgery, chemo, and rads. Now that my only treatment is just the daily arimidex, I feel a letdown of emotions.  Don't get me wrong.  I am glad the BC battle was hopefully won, but I do miss the fight mode.

Anonymous

EXACTLY what ruthbru said.  My docs talked with me about this after my last chemotherapy, and before joining the A Team.  SO IMPORTANT.  Even with the every 3 month followup visits for the first year, it was still a MAJOR adjustment.  You expressed it so, so well.  I've tried to explain this to friends, most just don't "get" it.  "Aren't you glad it's over?"  Well, DUH, of course I am.  But, we all know it's NEVER, NEVER, NEVER "over" - we still take medication, and I don't know one woman who has had bc who doesn't keep some perspective/view/thought of "looking over her shoulder."

It feels ESPECIALLY strong fo rme right now - just about 5 years since I flunked my yearly mammogram - and it used to be, well, for years I remember hearing - "Oh, 5 years, you'll be fine."  No more, we all know someone, esp. an E+ woman, who a lot of years after the 5 year mark...well....

I know, I know, the medical folks didn't have the AI's then - but still, something about being at the 5 year mark - reminds me, that time isn't what we used to think it was....

THANK GOODESS for the AI's....

buddy1

Hello, I am almost 3 years out and have been on Arimidex or the generic form.  I recently found a lump.  Have any of you had your cancer come back while still on Arimidex.  Also, have any of you heard that having implants will prevent the arimidex from properly circulating and doing its job effectively.?  Thank you.

sas-schatzi

http://community.breastcancer.org/forum/6/topic/781867?page=1#post_2830873

Anyone interested I wrote a new topic thread on constipation------ah the things we share-sheila

ruthbru

Buddy, I am absolutely sure that implants would have nothing to do with how arimidex works, as it goes through the blood stream. Let us know what you find out about the lump.

ruthbru

Sunflower, we must be on the same timeline. I jumped on this treadmill Feb. 2007, so am coming up on the 5 year mark too. Nope, nobody else 'gets it' at all.

mcgaffey

I had this conversation with a friend yesterday. I am glad that I do, "get it." It makes me intensively aware of the beauty and energy and amazing place this life is. I know we just get a short ride and to make the most of it, jump through the hoops. Do what you have always wanted to do. Do it. 

mpeaches

This is slightly off topic, but I thought it was hilarious.  Last night I go through my nightly routine of taking all my pills & supplements.  Not too many prescriptions these days, thankfully, but LOTS of supplements.  And I'm very fortunate, because I can swallow all of them at once.  (A good friend can barely gag down a baby aspirin, so I do feel I'm lucky!)  Well, I get them all into the palm of my hand, toss them into my mouth, and to my horror, one of the small pills falls from my hand and immediately goes down the drain.

Crap!  I don't know which it is!  Is the the baby aspirin?  No big deal if it is.  Or the Vitamin D, that can go.

But what if it's the Femara?  Or - horrors! - what if is's the Ambien?

All of this ran through my head at lightning speed (well, pseudo-lightning, you all know how our brains are these days) and I spit all the pills back out into my hand, and pawed through them to find the missing one.

It was, indeed, the Ambien.  So, I got another one out, moved AWAY from the sink, threw them all in, and swallowed.

And slept blissfully until morning.

Giggly (away from the sink!) purrs,
Jenn

sas-schatzi

Jenn, I did the same thing except it was the Aromasin. OH WELL. I also don't take them over the sink anymore LOL sheila

mimi1964

Hi Ladies, I've been taking generic Arimidex since last April.  The side effects came on slowly.  First it was some minor hair loss, which has gradually lessened, and by November, 7 months out, I was having night sweats and hot flashes only at night and leg aches that were so painful there were days I would sit with a heating pad on my legs.  Prior to being on the Arimidex I had taken Tamoxifen for a year and had such bad side effects with joint pain, creaky knees and weight gain the MO changed me. 

I saw the Rad Onc a few weeks ago and he put me on Effexor for the night sweats and flashes (I had a total hysterectomy and ovaries removed 10 yrs ago) and so far this is really helped.  I also started back on Vitamin D3 2000 IU's for my leg pain and that has gotten better.

I still have problems with my knees hurting.  I've tried Glucosamine Chondrotin but it doesn't seem to help... any suggestions? 

I was also wondering about the thinning of the hair - has anyone had this happen and then their hair thicken back up? or do you have any suggestions to help with it? 

I to have found using Organic coconut oil for personal time with my DH works well for lubrication.  As I also have vaginal atrophy.  I bought mine at Wal Mart in the cooking supply section.  Think it was about 6 or 7.00. 

Anonymous

Mimi - the BEST BEST BEST for me to remove ( not relieve but REMOVE) knee pain has been Acupunture.  Suggested by my oncologist at Dana Farber Cancer Institute - they have a Complementary Care Center ( too far for me to drive, I see someone locally) and  just wish I could afford to have every woman I know have Acupuncture treatment who is taking an AI.  NO MORE JOINT PAIN.  Can walk up and here's the best part DOWN stairs now.  I go once a month now, went more often in the beginning when every joint in my body creaked, I swear, my whole body just creaked.

MPeaches - that happened to me once, I was taking the pills with a bottle of water, got them all down, looked down into the bottle, and  couldnt' BELIEVE how many were on the bottom of the bottle.  Use a glass now, over the counter, not the sink.  Amazing what we learn ;-)

mcgaffrey - love your post - if we had an I LOVE IT button on BCO, I'd give you the award for BEST POST.  Really, thanks for reminding me, never can be reminded too often!

Buddy1 - don't think an implant can interfere with an AI - same reasoning as ruthbru.  Sadly, I do have a friend who MISSED a huge lump, it was behind an implant, and she never felt it, and mammograms didn't pick it up.  She had them put in way b4 she got bc.

Constipation - as I could fund someone's college education with what I've spent in this lifetime on Immodium, and the generic, it's never been my problem - EXCEPT after back surgery!  AND, then, pitted prunes, with a little water and some lemon or lime juice, heated in microwave - VOILA!  Magic.  Worked immediately - couldn't STAND the orange colored sludge they wanted me to drink in hospital.  Angel of a nurse brought in the prunes ( and some red wine) lovely combination.  Costco sells HUGE bags of pitted prunes (plums) - another hat tip to ruthbru, I now eat them for my bones ;-)

Claire_in_Seattle

I seldom need prunes, so I ended up stewing the leftover ones from active treatment in brandy.  Were wonderful with a bit of heavy cream on top.

They were quite dry by that time, but the brandy did wonders for bringing them back to life.

ruthbru

Another little thing that can help creaky knees etc. is to make sure you are wearing good, supported shoes....and when your legs start to ache,get rid of them immediately, even if they still 'look' good.

Brandy does wonders for bringing me back to life too .

buddy1

Thanks girls  I really appreciate all of your imput,  I am definitely gonna try the Brandy trick.  lol

sebm9

SunflowersMA: I enthusiastically recommend acupuncture also, for aches, pains, low energy, mood swings, everything. I am very lucky that my cancer center has a truly integrated approach. My insurance covers it, but there are sliding scale clinics available in the area (East Bay).

mcgaffey: I agree. My cancer diagnosis was, among other things, an immediately clarifying force in every area of my life. And after I hunkered down and got my head around it, I resolved that my life would be a journey about living, not an exercise in not-dying. Each stage of treatment has tested me in new ways, but I've kept that as my mantra.

Susan 

DivineMrsM

sebm9, good philosophy

Kate77

Hello all.  I am new to this site and so far have found it extremely helpful.  I just started taking the generic form of Arimidex and one week into it I have leg pain that keeps me awake at night. At times I just sit and rub the tops of my thighs and massage my calves.  Heat does seem to help.  I am finding a lot of good advice for this side effect.  My questions is that I start radiation next week and I notice that a lot of people have said they didn't take an AI while doing radiation.  A friend of mine also went through the same thing and said her oncologist didn't have her start tamoxifen until she was done with radiation.  Any thoughts about whether this is okay?

Claire_in_Seattle

Kate..... I started anastrazole and radiation the same week, plus got the port out.  This was the study protocol I was on.  I think they wanted "high risk" women to be taking an AI prior to cell regrowth following chemo (so that if there were any cancer cells left, they wouldn't have any estrogen to grow in).  So I needed to do this w/i 28 days.  I think I just made the window, but because I was able to start on May 1, and knew that was a date i would remember.

I am not sure if you have soreness or leg cramps from your description.  Aspercreme is what I use when my knees bother me (nothing new) and I use electrolyte chews/salty food for cramps.

As for taking anastrazole while undergoing radiation, I was just fine.  I had to start some time.  In some ways, it was easier mentally.  When I finished radiation, I had already crossed the "starting Arimidex" hurdle.

The thing to celebrate is that it is now generic.  My first two months cost me $135 per month co-pay.  I now pay $12 for three months.

Jean0078

I finished chemo Dec. 19, started Anastrozole on Jan 1, 2012 and start radiation tomorrow. My oncologist said that all of this was fine. 

mpeaches

I promised I'd post the ingredients to the vaginal suppositories my oncologist prescribed:

The suppositories are a combo of hyaluronic acid 5mg, Vit E 1mg, Vit A 1 mg; insert one every night for 14 days then every other night for 14 days.

I've been using them for less than a week, and really notice a difference. We still have to use KY, but I've ALWAYS had to use KY!  

Purrs,

Jenn

ruthbru

They used to have online 'Ask An Expert' discussions on BCO when I first joined (they haven't done it for awhile now, which I miss...just in case a moderator is checking in). That is a question I asked and they said that it doesn't matter if you start Arimidex during radiation or wait until you're done....that was the advice as of a couple years ago anyway.

Valjean

Kate77 ~ I was told by my Onc to begin Aromasin "directly after the radiation treatment", so that's what I did. Ended Rads on Feb 19, took the first little white pill Feb 20. I am close to three years taking it. The SE's for me are managable, not likable, but managable....

Good luck with the rads, please let us know how you are doing.  

stage1

I was also told to take Arimidex after rads.  Something about the radiation kills any cancer cells left behind. Arimidex might interfere with the process.  I don't think anyone knows "for sure" including the doctors.  We always get conflicting opinions.

buddy1

I was also put on Arimidex after radiation.  I was expecting to start it right after chemo.  This was a few years back and new studies keep coming out.

Rocket

I was put on Arimidex a week before starting rads.

twoputter

I too started arimidex after radiation...as you can see there are many different regimes.

Anonymous

I didn't have radiation - but my oncologist had me wait about 6 weeks after the last infusion to begin taking Arimidex.  This was 4 1/2 years ago - don' tknow if that's changed.

Nana2three

Sorry if the answers are alsewhere but today I am on overload.  Saw onc Feb. 1 and he started me on Arimidex.  I will start chemo plus Herceptin Feb. 16.  Will get a port put in next week. 

1.  Have any of you been on Arimidex and chemo at the same time?  I'm reading all of the SE's of both and don't know how I will know what is causing it or do I just accept as my new normal.  I also have MS so I am used to joint pain, neurathopy, and the MS side effects.  The onc. and MS dr. have taken me off all the MS meds.  I have a positive attitude and have never suffered from depression and that does concern me.  I really appreciate all the posts on this thread and know I need to gather all the info I can.  My onc. does not explain things well and usually avoids giving too much info.  Looks like I am facing 4 rounds of TCH, then 1 year of Herceptin along with 5 years of Arimidex.  I can do this.  

ruthbru

From what I know, you do Arimidex AFTER chemo, not during (although yes to Herceptin and arimidex at the same time). I'd ask more questions about that one.

KittyDog

I have read some studies of taking it with chemo helps in shrinking the tumor.  I don't remember where I read that.  I was one that did chemo first, surgery second, radiaiton and then two weeks after radiation I started on Tamoxifen.      So it just depends on your Dr.