Stopping Hormone Inhibitor Treatment Early

KQuigley

I'm 2 1/2 years out the gate -- and probably 2 years on hormone inhibitors.  I've tried them all and my body just hates, hates, hates them.  We came full circle and settled on Arimidex.  My bone and joints hurt so bad that sometimes I lay in bed at the end of the day just moaning. The most difficult part about all of this is that just before my diagnosis, I felt and look the best that I ever had.  I had lost weight, stopped smoking and was very active.   Now, all I can think about is getting through the work day and laying down.

I have an appointment on June 15th with my oncologist.  I am seriously thinking of stopping the medication.  Has anyone else stopped early?  How long ago and how do you feel now?

Thanks!

dlb823

K ~ We have different stats, but I stopped Femara after about a week.  You might want to check out the Natural Girls thread in the Alternatives Forum.   There are natural estrogen modulators such as DIM, I3C, Grape Seed Extract and Myomin that some women choose in lieu of a pharmaceutictal A/I.  The can also cause aches, but not quite as bad, and they don't thin your bones.  And there are natural supplements to help with the aches and pains if you decide to stay on an A/I.  Sometimes switching to a different A/I (either Fermara or Aromasin) will help some, and Tamoxifen's another option for some women.  

The bottom line is, there are options...     Deanna 

sisterinspirit

K,

I took tamoxifen for about a year and quit because it so badly affected my quality of life.  I was extremely tired much of the time and would my emotions were all over the place.  Arimidex and Femera weren't options for me because of my fibromyalgia.  I stopped taking the tamoxifen as a test to see if it would help, then went back on it.  After doing that a couple of times, I knew the tamoxifen was the culprit and quit for good.  That was about 2 years ago, and I feel great. In a perfect world, I would have preferred to stay on it for the 5 years, but it just wasn't in the cards for me.   Agree that you should talk with your onc.  Good luck to you! 

Deb

ICanDoThis

We don't know each other, but we are both Stage 1, Grade 1. And I quit after 2.5 years - my onc said she would support whatever decision I made.

 Our odds of recurrence are really low, like over 90% unlikely - do you have other positive factors. If you had good margins, for example, then it is likely that your odds are even better.

Suffering is not what recovery from cancer is about - it's living!

If you go down to the Hormonal Therapy forum, you will see that there is constant debate about this very issue. you are not the only one.

I am so sorry that you are going through this.

o2bhealthy

I stopped tamoxifen after about 9 months - the foggy brain, depression, joint pain and body aches made me feel the same way.  I would drive home from work counting the miles until I get home am be able to lay down.  It was no life.  My family missed me, hell I missed me!  I was 38 when dx'd and I felt like I was 90 years old.  My onc is not happy with me but QOL is important too.