Just Stopped Arimidex after 9 Years - What Now?

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Anonymous
Anonymous Member Posts: 1,376

Everyone, I just stopped Arimidex after 9 years. What happens now? Has anyone stopped recently and have any info? How do you feel? Any changes?

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2016

    For me the changes were gradual. But after I was done I felt less achy, less hot-flashy & felt a lighter mood (can't really describe it as I didn't have bad SEs while on it). Once I got over being freaked out about 'doing nothing', I felt really happy to feel like I could move on with BC in the background instead of staring me in the face every day in the form of a pill bottle.

  • kmpod
    kmpod Member Posts: 234
    edited April 2016

    I was very happy when I read this thread:https://community.breastcancer.org/forum/6/topics/...

    - something to look forward to as my 5 years draw near.


  • momand2kids
    momand2kids Member Posts: 1,508
    edited April 2016

    went off femara after 5 years in 2014--- had side effects, not horrible, but still had them... mostly fuzziness in my head--and vaginal dryness. fuzziness lifted more or less over time and I use all the appropriate things for the dryness including vagifem.... so things are much better!!! These AI's are powerful drugs...


  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2016

    And try to remember that going off AI/HT doesn't have to mean we are "doing nothing". I believe the daily Vit D supplement I take, the moderate weekly exercise I give myself every week, the regular bikram yoga classes I attend, the weekly weight-lifting I do, the mostly plant based nearly 100% organic diet I eat, are ALL still ways I'm self-administering treatment.

    I'm not off my AI--not for years--but when I finished chemo and rads I remember temporarily believing that I was just cast out to sea, drifting without safety. I had to flip my perspective and believe that all of the above was still treatment.

    Claire

  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2016

    Oh absolutely, I meant doing nothing medically. I exercise like a fiend (that is, by far, the biggest thing we can do for ourselves to lower recurrence risk), I keep at an appropriate weight, I mediate, I take a daily low dose aspirin, try to eat a healthy diet (my downfall!). All things that lead to better health overall and can reduce the chance of recurrence.....win/win!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2016

    Thanks to all for the info. Good luck to all of us.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2016

    Claire, I saw your mention of Bikram yoga classes and know that you had 11 nodes removed. Have you had any LE issues that you ascribe to yoga or are you o.k. with it?

    I do adaptive yoga but would like to take it up a notch and have been interested in Bikram for some time yet am a wary of triggering LE. Any insights you'd care to share? If so, many thanks!

  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2016

    I do yoga, lift light weights etc. Here is an old post of mine from the Lets Post Our Daily Exercise thread on the Fitness Forum (come join us if you want some exercise buddies!):

    I had 11 lymph nodes removed, so this (LE) has always been an area of real concern and mindfulness for me. When I had my surgery, there was no one around here to go to for advice, so I did a lot of studying on my own. Here are some thoughts & tips I came up with.

    First, I think that whether or not you are prone to LE has mostly to do with how your lymph system handles trauma. I would say most cases (unless you are in a horrible accident or are doing really extreme activities) are neither through any virtue or fault of your own; just a matter of good or bad 'luck'.

    That being said, there are many 'little' things that we can do that may reduce the risk of developing LE or minimize flares (these are for people with SNB too):

    • No BP, IVs, needles, shots etc. in that arm....consider getting a medical ID bracelet (to wear when traveling anyway). There are some really pretty ones out there that look like jewelry (I have a good website if you want it)
    • Wear gloves when doing yard work, gardening etc.
    • Wear sunscreen when out in the sun, bug spray when out with the bugs
    • If you get a cut, scrap, bite...wash it with soap/water and slap on a bandage. If you see any sign of infection, get to the Dr. & on antibiotics ASAP
    • Be sure to switch arms when carrying your purse, hauling around anything heavy, dragging luggage etc.
    • Be careful about saunas, I avoid them, and also manicures and massages (on that quadrant of my body anyway).....not everyone does, but that's just me
    • Keep a healthy weight
    • Keep hydrated, limit alcohol
    • Don't wear tight rings, watches, bracelets on that arm (when flying, I put my rings on my other hand & leave them on that side fro a couple hours after I land)
    • Also, be sure to keep well hydrated when flying, move your arm around a lot, make fists etc. get up & walk around the cabin (which won't be a problem if you are well-hydrated because you will have to go to the bathroom!), if someone wants to help you hoist your carry on & off the overhead, let them.....maybe think of checking a heavy bag....
    • When exercising that arm; start very slowly, take your time...build up weights very slowly...don't skip levels...don't do too many reps in one session. Mix up your exercises, don't work the same muscle groups every day. You may want to work with an experienced trainer (or PT) to help you construct a balanced program.
    • One thing I do want to add; after my surgery I was scared to start doing upper body. Neither my surgeon nor my oncologist could give me any good solid advice, so I talked to my GP. What he said was that I DID want to exercise my upper body, that it was important to do so as it would actually build up the lymph system, and although, of course, I should be careful and notice if my arm felt heavy/swollen etc. that I shouldn't be afraid to have it feel a little 'normal' soreness...because anytime you exercise a part of your body that you haven't been using for awhile, of course, it will feel sore. That made sense to me, and gave me 'permission' to get moving.
  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2016

    Thanks, Ruth. I'm pretty familiar with all of that, as LE was a HUGE concern of mine. I get the impression that for many women it's a matter of either gradually returning to doing what they had generally done in the past OR gradually expanding the activities they've engaged in without triggering LE.

    The whole business of the heat involved in Bikram yoga both appeals and concerns me. I've always loved saunas (haven't tried one since sx.) and enjoyed hot tubs to a limited extent. I hate to give up things I enjoy or might enjoy, in the case of B. yoga, out of an abundance of caution.

    I enjoy lots of different activities, from heavy yard work (well, enjoy might be putting that too strongly, but I do it) to kettlebells, water aerobics and hiking. One thing I've learned is that it's important to keep varying activities and I don't want to avoid some that appeal, simply out of fear of a possible consequence.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2016

    Just one more question, does your hair thicken up after stopping the Arimidex and does the vaginal dryness get any better?

  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2016

    I didn't have any trouble with my hair, so can't answer that one. As for the other question, that is still a problem. I imagine some of the things that stay problems when one is done with the pills, are probably age related more then pill related. Sigh!!!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2016

    Thanks, ruthbru!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2016

    Now on week 3 after stopping Arimidex after almost 9 years. I have noticed that I feel more like my old self. Don't really know how to explain it.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2016

    I felt like it was an overall lifting of my mood....nothing specific or extreme,,,,but lighter somehow.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2016

    Hopeful8201: I've never had any LE issues. I lifted weights, hiked, and attended bikram classes 2x a week all through chemo, radiation, and even surgery (I did take 2 weeks off from bikram post BMX, but I also remember tucking my drain from my lumpectomy surgery into my yoga shorts and soldiering on through each class during that recovery too).

    I've flown to Ireland, Iceland, and Hawaii, along with shorter continental US flights, and never had one problem. I think my good fortune could be because I was in such good shape before, and kept it up during treatment? I suppose I'll never know.

    Claire

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2016

    It has now been 4 weeks since stopping Arimidex after 9 years. I am having many more hot flashes. Strange. I guess the estrogen levels are in chaos.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited May 2016

    Aug - that is really crazy! I hope it all settles out very soon! We are just hormonal creatures, huh?!

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2016
    Claire. - thanks for the info. I think the uncertainty is one of the under appreciated aspects of cancer, treatment and LE.



  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2016

    It has now been over 2 months after stopping Arimidex after 9 years. Still feeling more like my old self. Less anxiety. Sharper thinking. Constipation and indigestion is much better. I would still do 9 years of Arimidex if I had it to do over.

  • annadou
    annadou Member Posts: 221
    edited September 2018

    Hi Aug242007

    Your post interested me because you went for nine and not ten years . I am exactly 9 years with Arimidex and want to stop it but I keep getting told that its 10 years.Is it such a magic number one asks.

    How did you decide to stop? I cannot say that the side effects for me were unbearable so that doesnt really justify coming off it ,Im just had enough of the itching skin and hair loss that I do suffer from.

    My best wishes for a healthy future

    Anna

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2018

    Hi, I stopped at 9 years because I did not see the difference in 9 and 10 years in any study. Do what your gut says.

    Melissa

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