Forum Discussion

Peartree's avatar
Peartree
Member
11 years ago

After Zoladex but still on tamoxifen?????

I'm curious to hear from any women who have been on the Zoladex/ tamoxifen combo and have completed the Zoladex and remained on tamoxifen. Did you notice any difference? Did you find the combo ok or struggle with side effects.

Myself: I have been on Zoladex and tamoxifen (2yrs+), with the original aim of 3yrs Z /5yrs T. For me it has been a hellish ride and I have no real way of knowing what I can attribute to each drug (or something else). I had horrendous nausea the first year: everyday at 3pm I'd be turning shades of green: no antinauseas worked. Ginger, icy waterand running over 10kms seemed to get it under control. In the second year, the fatigue grew to the point I can only go to work but have little life. I have worked through my dx though and at least some of this I think is not having had headspace to deal with it. 

I'm keen to share my experiences because there are things that helped that may help others. I'm told my experiences and side effects are not common and I do not want to discourage other women looking at OFS/tamoxifen as I still think it was the right decision. 

I've now been recommended to call an early halt the Zoladex but have menstrual like cramping 10-12 days out and so have not yet quit as relief from severe period pain was one up-side. I've also lost bone density with the combo, which is usual from my reading off the clinical studies. Recently I also started having hot episodes throughout the night but not had them until now. I find this curious as I did not have issues in the first 2 years (except the 3pm nausea/ shivering episodes).

Im interested to hear your experiences or share mine. :-)

 

 

 

hot-flushes
side-effects
tamoxifen

4 Replies

  • Peartree's avatar
    Peartree
    Member
    10 years ago

    It's now been 7/8 months off the end of zoladex. I started to notice about 3 months ago an increase in energy and less difficulty grabbing words. Then in the last 2 months, the energy has continued to increase and now my muscle strength has started to return. I find I can now pull myself back up on the climbing holds whereas that dissapeared for about 2 years, even though I continued each week trying.

    I'm still not 100% but this is a real improvement. After 2 years of not being able to do things on the weekends and especially evenings (except my one climbing attempt), I have gone out to events! I can not tell you how much a relief that is.

    I'm still having big issues with gynae things, but have got back to problem solving that and seeing some improvement (back in the if you don't use it you lose it realm). Still getting creaky joints and having more heat related issues, but I can see myself getting back into running again. Yay! Stick with it ladies if you can.

  • Peartree's avatar
    Peartree
    Member
    10 years ago

    Just an update in case it is of any help to anyone else. I'm now 5 months from the end of zoladex (2+yrs) and still on tamoxifen. I have not noted any major changes and cycles not yet returned. I post mainly to the UK forums as since the new forum it is very hard to post on my iphone, and the combo has been more widely used. I've read it can take over a year or not at all, so will see what happens. Will get hormones checked again at the 6 month mark. Still be interested in any other women's experience of cycle return after zol/tamoxifen. Best wishes

    P

  • Peartree's avatar
    Peartree
    Member
    11 years ago

    Jan, 

    thanks for replying, that is appreciated. I'm sorry to hear you have the creaky joints/ pain And glad you are not kicked around by nausea. I have had minimal problems with flushing until recently but due to problems posting in the new site posted to a uk forum where there was another woman who'd been like me who found intense exercise really helped so I have started on small runs and am now sleeping through the night again and flushes have dissapeared, so that's one symptom down. Your comments are encouraging and I'll try keep it up to see if it helps the fatigue. Will update over the next month. (Still having problem posting on the forum so apols if this reads funny).

    P

  • conder41's avatar
    conder41
    Member
    11 years ago

    Hello Peartree...I am responding to your comments from 8 March and not sure if you had others respond or not as I can't see anything showing.  I am on a combo of the Zolodex implant each month plus Femera as opposed to Tamoxifen which I was unable to take due to other health issues.  Thank goodness I have not experienced the nausea like you!  I have been told that I will be on the implant for 12-18 months (so far been on it 12 months) but the Femera for at least 5 years plus, possibly 10 or indefinitely.  I find hot flushes and disturbed sleep the two main side effects that I have, along with terrible aching bones!!  Some mornings I can hardly put my feet to the floor.  I hope it is not doing too much damage to my bones and will eventually have another bone density scan to see what is occuring.  The aching bones only started about 6 months into the medications but the hot flushes and disturbed sleep pretty well right from the start.  And I think fatigue is very common with the medication and I also often have trouble "thinking"!  Jan