Has anyone started and stopped taking tamoxifen?

@melclarity. I have had all my hormone tests done to see which is the best for me but I think my onc will start with tamoxifen. I’m going to speak to her about having ovaries removed too. 

Very interesting @melclarity. Thank you for posting the link.

@kiwi Angel very scary! My oncologist was more confident with Arimidex or Aromasin than Tamoxifen for me. I also have prolia injections for osteoporosis 6 monthly thanks to chemo but its working great 18 months on! Im so much better and an interesting thing is prolia offers added  protection and they dont know why against BC. Thing is we can only do what we feel we can. I was over treated originally and still had a recurrence. X

@melclarity I think I have also ready a similar article before - so scary!!

@kezmusc yes it is a harsh reality, my Surgeon told me at the point of my recurrence which absolutely shattered me, as I hadn't heard of that before. Here's an article that describes it, plus the National Breast Cancer Foundation also released an article on it too.

https://www.imperial.ac.uk/news/177133/breast-cancer-drugs-stop-working-when/

x Melinda

1 in 3.  Wow,. that's inspiring.  I can only ever find stats raving about how much it stops recurrence...blah.  I did find a couple of articles on the mutation that can make it resistant.  You'd think after 30 years on the market we'd have some better info on this drug.  

It's such a hard call I think for anyone, I had no side effects on Tamoxifen in 2011 but had a recurrence same spot in 2015. Lost alot of faith in not just the medication but the whole treatment process really. It has been documented that unfortuantely in 1/3 of cases Tamoxifen doesn't work, it's learnt how to adapt in some people. Post chemo in 2015 was put on Arimidex but side effects were pretty tough so switched to Aromasin which have been on now for over year, its pretty much the same but I just put up with it. I think for me it's either I'm on it or off it, as I discussed also taking it possibly something similar to @kezmusc but was told that it wouldnt be effective. So am plodding along, 3 yrs clear 2nd diagnosis now and counting. It's individual and we dont have a crystal ball to know will it work or not? but I think we choose the options that give us our best chance. My beef is it has caused high cholesterol for me now and my BP is high and they dont know why GRRRR. So what take meds for them as well?? over it! 

I gave myself a fortnights break by taking only half a tablet, 10mg. It was nice to get my brain back if only briefly. Oncologist is talking Femara next for me.

The choice that you make is one you have to be comfortable with.
 
I have just changed from Tamoxifen to Femara as I had gynaecological issues with Tamoxifen.  The side effects, at this stage, appear to be the same and as I lay in bed at night with my aching bones I think what the!  It is a long haul, I have 7 years to go but at this stage I am determined to work through the side effects.  

I am currently in an exercise program http://www.exmedcancer.org.au/about and I am hoping that will help break the cycle.  We had a get together after Fridays session, 10 in the group; some are much worse off than me, so it makes me more determined to keep going.

As @TonyaM said "It’s a hard decision but gather the info, then do what feels right for you." 


Take care

After I got a recurrence in the same breast,I was determined to take Tamoxifen.The side effects were awful and the only way I got through it was to take a low dose antidepressant called Endep(10mg)
It helped with sleep,hot flushes,low mood and aches.I took Tamoxifen for 4 yrs and that was enough for me.I’m now 8yrs on from my last bc and all clear.It’s a hard decision but gather the info,then do what feels right for you.