Weaning off of Zoladex : Has anyone... - SHARE Metastatic ...

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Weaning off of Zoladex

Rhwright12 profile image
15 Replies

Has anyone here taken Zoladex? (Anti estrogen to put u in menopause) If so has anyone gotten off of it? I’ve been on it for 2 1/2 years...I’ve had a terrible time with it the last year with weight gain and brain fog/fatigue...I’ll be 50 in December so I’m looking to wean off it due to the side effects...So has anyone else been through this before? Did u wean off or just go cold turkey one day? 😀

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Rhwright12
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Marieleb profile image
Marieleb

Yup , just went cold turkey a couple of months ago as I moved to IV chemo after 18 months on it.... Had no side effect while on it and no side effect after coming off it.

Rhwright12 profile image
Rhwright12 in reply toMarieleb

Did u have any problems with restarting your monthly cycle?

Marieleb profile image
Marieleb in reply toRhwright12

I didn't as I am now on IV chemo and treatment effectively stops cycle anyway...

Hi Heather,

Sorry to hear that you are having a hard time. I have been on zoladex for two years this month. I’m just curious about what you plan to take next. Or are you having an oophorectomy?

Sophie

Rhwright12 profile image
Rhwright12 in reply to

Not sure what to do next...That was actually what I was hoping someone would have some advice...I’m actually only 10% ER and Pr- so I’m being treated for my Her2... Herceptin/Perjeta.... and I get Zometa as well... So I get 5 meds with Armidex along with the Zoladex I’m quite over medicated and every year or so I get major brain fog and need to cut something back for a few months. Right now I’m looking at the Zoladex only because I’m so near 50 and should be ready to go through it naturally now...

in reply toRhwright12

Hi Heather,

Have you spoken to your oncologist about how you are feeling? He or she will be able to look at what's going on and help you decide what's best and if it is a good idea to come off the zoladex. It's my understanding too that if I stay on zoladex until I go through the menopause naturally that I can then cut it out, but I am not sure if it works like that.

I think your oestradiol levels need to be checked first to make sure they are low enough. I know mine were before I started letrozole. I had my last period and then I started letrozole two days later. I think that is how the doctors will be able to tell if you are getting ready to go through the menopause naturally. If not, then your periods will likely return once you stop zoladex.

I hope you get some answers soon. It's not pleasant having to deal with those side effects.

Sophie

Rhwright12 profile image
Rhwright12 in reply to

I’m having a hard time getting them to check my levels. The NP put it in the notes for next time. My center is frustrating sometimes...I’m doing well...4 years and my last 2 scans have been clear...I think it works against me sometimes. I feel like I’ve been put on autopilot 🤦‍♀️😱😂

in reply toRhwright12

Let us know once you have an update. Hopefully there is a suitable solution out there for you.

Barbteeth profile image
Barbteeth

I had zoladex for two years ( I was 40 at the time) then came off it and my periods came back normally

However this was when I wasn’t metastatic and it was a long time ago...I don’t recall any side effects

Barb xx

Rhwright12 profile image
Rhwright12

Thanks! I was looking to get off it...but don’t want to restart things(monthly issue) and was originally told around 50 u could try...and then get back on if you’re not in menopause yet....basically it’s a guessing game with no real rules...but was wondering what others experiences were. 😁

doomkiller profile image
doomkiller

Hi Rhwright2

I have been on Zoladex since July 2019. Oncologist won't take me off it as I have not gone through the menopause yet, and the breast cancer is feeding off oestrogen. Side effects are terrible: weight gain, bloated tummy, hit flashes, vaginal dryness, etc. I'm 56. With breast cancer metastasis , he won't take me off it but has taken me off anastrozole.

Wish life could get easier. My heart goes out to you. I feel like I'm pregnant at times with this huge stomach. God bless.

Rhwright12 profile image
Rhwright12

Hi Doom! Yes. That’s me...I’ve gained like 10-12 since last summer and I diet and exercise a lot...If I didn’t those numbers would easily double. I take Annastrozole too...I actually feel better since I believe I got the 1 month vs 3 month shot in February...weight is a little easier to control and brain fog has lifted...😀 I think breaks on occasion aren’t a bad thing. I’ll be 4 years in June...

diamags profile image
diamags

I had an oophrectomy (ovaries out). So nothing changed. However, it didn't bother me when I was on it. The oophrectomy was less painful than the shot!!!

GinaAngel profile image
GinaAngel

I have restless leg syndrome since February. I thought it was my Zometa infusions so I stopped them in February but my leg is still painful at times. I'm on Ibrance and Letrezol too so maybe that's causing my issue? I hate cancer and all the side effects of taking these drugs our bodies weren't meant to injest.

Kiera49 profile image
Kiera49

I just went cold turkey and was fine

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