Anyone post zoladex but still on tamoxifen?

[Peartree]

Just updating, incase this is of use to someone down the track. I am now 2 years post zoladex and 4.5  yrs into the tamoxifen (age now 45).

There was definitely a difference stopping zoladex. My bone density decreased a  bit more in my hip? but has increased in my spine. As you may know tamoxifen reduces bone density in premenopausal but increases it in menopausal. Whist it shows I have mild osteopaena, Ive had two bike accidents and lots of ski falls and things have been fine.  Otherwise, I think my moods picked up, but I have found other side affects got worse as time has gone by. I have horrendous, angry mood swings, short term memory is reallllly bad. Recently I have lost some weight which I had not been able to shift before (nothing else changed). I am sooo looking forward to coming off it. I have still not had a period and my hormone levels suggest I am still premenopausal.  I have been asked to consider an extra 5 years but for me this is not something I plan to do, and something another one of my oncology team had prepared me for by calculating relative risk. This is very individual, for me the side effects have made every day hard and all I can do is now count down my packets, strips and individual pills!!  I also have not been able to run much and I hope I can pick this up again. I read a study which indicated very high levels of running had a very big impact in risk reduction so it's like everything on balance and very personal but it's something I really resent that I have not been abe to keep up easily (I overheat so much the best I can do is jog on the trampoline with the air con on (and that's in winter!!). If I don't feel that different I will consider going back on it. Hope this post is helpful to someone. As hard as it's been, its been worth for me sticking on it. Best luck to you all.

P 🙂

[Peartree]

Hi. Now at 6.5 months post. Have been feeling a lot better physically and muscle strength has improved. I've had a holiday and done more exercise but I got my hormone results today and they have increased since my last lot and my oncologist said I should be likely to get a period in next months. Will keep the forum posted. Be interested to know how any of you have gone and hopefully this post helps someone down the track. 🙂

[Faith]

Hi 

I have stopped Zoladex and I am still on Tamoxifen.... I haven't noticed a lot of changes!

[Peartree]

Update: almost 5 months now since end of zoladex and no major changes. Moods seem much more volatile. Libido occasionally picking up. Expected a much quicker return but will keep posted. Temps are about .5c higher though.
🙂

[Peartree]

Hi. Thanks Joolz and good luck with the appointment!
It's been now 6 wks since the next implant would have been due. I got a terrible cold and have suspected fractured a rib coughing (maybe the drugs had contributed to that) but it will fix: getting proper pain drugs helped! Probably not what you want to hear...
Otherwise I've not noticed much change yet as too early. I do seem to be sleeping a lot better and not as noticeably reactive to heat.
Started cramping again and sore breasts so I think the system is starting up slowly. Had other scans/ checks and all is clear. Will post another update if/ when things change. Oh, and also my feet are feeling less brittle!! Mood definitely feeling brighter. Fingers crossed more changes take place.
🙂

[Joolz2000]

Hi Peartree
My oncologist appointment was moved to July so looks like I'm having one more 3 month shot of Zoladex in June. Hopefully this will be the last. How are you feeling now that you have stopped Zoladex?
Jx

[Summer60]

Dear Ladies

I finished 2 years of Zoladex in September 2013 and am still on Tamoxifen. I too had about 8% bone loss, although my bone density is still within the normal range. I found the Zoladex gave me dreadful joint pains, so I spent most of the two years on it hobbling about and feeling miserable. Taking painkillers upset my liver (as it doesn't like the Tamoxifen so subsequently my liver enzymes are high, although I have been assured that I can see the treatment out safely).

When I stopped the injections, I slowly found my mobility became much better and can now run up and down the stairs with ease! I still have some side effects from the Tamoxifen - depression, and weight gain mainly, but a small dose of Venlafaxine helps with the depression, and I can lose weight if I put my mind to it. Sometimes my legs are very stiff if I sit for a long time, but that is getting better, and I don't get so many hot flushes now.

My periods didn't return, so cannot answer that for you, although now at 54 I wouldn't expect them to. However, I had blood tests to check my hormone levels recently and they are not low enough to switch to Letrozole. So I guess I will be on Tamoxifen for another year at least. The original plan for me was two years Zoladex, five years Tamoxifen and two years Letrozole. I take it that all of you ladies had Zoladex instead of chemo?

Yes, it has been tough going, but these treatments have been proven to work and I keep telling myself that it's not forever.

Good luck to you all - I hope it isn't too tough for you.

[Peartree]

Just as an update: I'm in the process of stopping zoladex but having cramping. I'm still keen to hear from anyone who's completed the zoladex and in tamoxifen. Did your cycles start back and did you notice changes when the zoladex ceased. Very much hope someone whose been through this can post.

[Peartree]

Hi Moyà,
Thanks for your reply.
Did you notice any change from stopping zoladex and remaining on tamoxifen. Would be keen to know.
Thanks P

[Moya]

I had two years of zoladex and lost 8% bone density even though I was (and still am) on tamoxifen which has a bone strengthening effect. I think the standard is to do a bone density scan in the first six months on zoladex to give a comparison point. I am not keen to move onto AIs as they also cause bone density loss.

Moya x

[Peartree]

Thanks Joolz for responding. I am about to cease in the next month after 27/28 months, so I will post how it goes. 

Best wishes

P

[Joolz2000]

Hi Peartree, I'm hoping to stop my zoladex in the next couple of months. I've been on it since July 2013 and am due to see my oncologist in May. I had my three month injection last week and am due the next one in June so hoping that she says I can stop and not have the next shot. Like you I don't know whIch SE is due to Zoladex or Tamoxifen but I'm hoping to feel better when I stop. I have not had any bone scans so don't know if it has affected my bone density. Is be interested to know how you feel when just on Tam. I'll let you know if I get to stop.

[Sam_BCC]

Hi Peartree

Welcome to the BCC forums.  I'm sure some of the other users will be a long soon to offer you their experiences.  In the meantime you might find it helpful to give the helpline a call on 0808 800 6000. Here you can talk through your thoughts with a memeber of staff who will offer you a listening ear as well as emotional support and practical information.  Lines are open weekdays 9 to 5pm and Saturday 10 to 2pm.

Best wishes Sam, BCC Facilitator

[Peartree]

Hi. I'm wondering if anyone is post zoladex (2/3 yrs) but still in tamoxifen.
I'm being recommended to stop the zoladex due to the hell ride I've had on it(??), and now increasing bone loss. Of course I'm not sure what is from the zoladex and what is from tamoxifen and keen to know hear from women who have made the transition and how it was.
Happy to share my experiences and what helped me. Despite the symptoms I still think it's been worth staying on it so if you are just starting out, I don't want to discourage you.