My experience with Zoladex and now 6 months after it....

Going through breast cancer treatment Hormone therapy
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I hope this will be helpful to anyone who is on zoladex or finishing it soon, I couldn’t find many posts about being post zoladex so I thought I’d post. 

 

Firstly I found Zoladex really hard. I started Tamoxifen first and the SE were not too bad, after a month on Zoladex I started having the intense hot flushes, ended up about 20 or so a day and night, also about 6 months into the injections I started getting issues with pain in my legs, hobbling around like an old lady, I’d even have to use the bannisters to go up and down stairs as I was so unstable, this was at 42 years old.

 

I also felt like a bear with a sore head a lot, like I’d got the worst PMT ALL the time and was on the verge of losing my temper daily. There was also weight gain, around 2 stone and I’ve never had an issue with this before, where it seemed impossible to lose.  I’d say these were both the worst side effects, I had other ones but they were mild. But I persisted and did 22 out of the 24 injections. The last two I just couldn’t face but I consoled myself with the fact that I had completed the greater part of treatment. 

 

I was interested to see what happened when the injections stopped. Ladies there is light at the end of the tunnel… The hot flushes have not stopped but greatly reduced, also in severity, I have maybe 5 a day and only feel them slightly, I no longer feel like I need to rip all my clothes off and throw myself out onto the cold pavement. 

My bones have gone back to normal, I can now wear my old shoes again (on zoladex I had to wear trainers that help cushion my feet) no limping around and aching bones. I have also lost 1 stone in weight, I’ve still got another to lose but hey ho, I’m just glad its going in the other direction for a change. My moods have def got better and I no longer feel like I’m going to lose the plot on a regular basis. 

 

On the period front - my last injection was in July and my first period was in October, the next period didn’t happen for about 6 weeks but then the last one was on time so that seems to be settling down too. 

 

So if you are having a hard time on Zoladex, hang in there and it will get better when it is over, it really is hard when its early days and you just keep thinking ‘I’ve got 16 of these injections left’ but eventually you will get to the end and start feeling more like your old self, it was worth doing it, having that piece of mind as much as I hated it and complained. 

 

Lisa 

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Hi

i am swapping from tamaxifon to the one you take because can not cope 

i am 1 year in and was told that I had to take for 5 years

how long did you take zoladex for and do you take the extra drug on top of it, if so any side effects

I have put on 2 stone and it will not shift I am not looking forward to putting on more?

can you take this for less time then?please please say yes

any info, thanks

 

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Hi Mandy
Started Zoladex in Nov aswell as Tamoxifen last May. I too have been told 5 years for Zoladex and 10 years for Tamoxifen. Can soooo relate to the PMT feelings on Zoladex Lisa thanks for sharing as i feel like i want to burst into tears most of the time and am hyper sensitive which is really unlike me. Does this ease off or donyou learn to live with it? Thanks xxxx

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Thanks for posting this. I have been on Zoladex and anastrozole for two years, recently had a mastectomy and lymph node clearance and now been told by oncologist I have to stay on this for five years. The mood swings and lows are the worst with the hot flushes. I have noticed only recently weight gain and bloating, which is weird as I haven’t changed my diet at all, and I thought I may have lost weight after loosing a breast!! I feel rubbish about having to be on this for another five years but maybe I would be more worried if I wasn’t. It’s doing its job, so keep looking at the end goal my pink girlies ??? question if this is a forced chemical menopause, does this mean in five years when I stop Zoladex I will have my real one? I’m 41 xxx

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Hi Pink,
I am the same as you the idea is we will reach natural menopause when we come off Zoladex and Tamoxifen but it wont be so bad. I think the idea with my oncs is to keep me on both till i go theough the menopause then evaluate things. I’m 44. Thanks for sharing about the mood swings thought it was just me. Its a pain butbif it keeps the cancer at bay its a small price to pay. Xxxxx

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Hey ladies,

 

I started Zoladex in october they told me I should take it because it might save my overis during chemotherapy nobady told me I have to take for years. I hope I don’t have too.  They told me after chemo I will start Tamoxifen. I am 28. Is anybody got pregnent after 5 years hormone therapy? I still don’t have  child and I would like to have in a future. With Zoladex I have just hot flashes and mood changes and mild depression but I haven’t started Tamoxifen yet. What kind of sideffect do they have with Tamoxifen is it really hard to cope with?

Many thanks

 

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Hi everyone 

 

Mandy- I think you should listen to what your Oncologist says, in that, everyone has a different story and situation, I had to have Zoladex for 2 years but that was because I was early stage ( stage 2 no lymph node involvement + mastectomy ).  Other people are on it for much longer. 

 

My experience with tamoxifen has been that the side effects are easier to live with than the side effects from Zoladex, I found it so hard that even 2 years felt like forever. But I did get to the end and its worth it, lets face it, having cancer is way way worse. 

 

My periods have started again, so I don’t know about people who are on Zoladex for 10 yrs and then are in menopause, maybe if you are in the real menopause its more gradual or a little bit more forgiving as its the body being natural, on Zoladex it always felt totally artificial if that make sense, like my body had been shut down and knew it had been. 

 

Dezdi - I’ve had some side effects from the tamoxifen but for me, the zoladex was the really hard one, its really worth trying to stick with it, the mood swings for me didn’t get any easier, I just gritted my teeth on a daily basis and tried not to loose the plot!! It was less like mood swings and more like one big rotten mood !! 

 

Lisa 

 

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So true Lemonlush i feel like i’m on one massive downer on Zoladex. Did anyone actually get the statistics for what actual % adding Zoladex to Tamoxifen gave them? I am going to ask my oncs next Friday as i’m finding the mood swings and tearfulness really hard going and i’m already on anti depressants. Any info about the actual stats would be great from you ladies. Xxxx I want to make an informed choice whether to stick with the Zoladex or just have Tamoxifen. Any advice gladly welcomed. Xxxx

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Saw my oncs today hooray!! They said they will give me another 3 months on Zoladex and if things don’t improve i will have the choice to come off it and stick with Tamox alone. Quality of life is important my onc said and i feel this too. I’m 44 and the Soft tral showed no real improveents for women over 40 adding in Zoladex. They said if side effects get worse or no better come back sooner to evaluate. Everyone’s situation is different. I had Stage 2 lobular invasive with no nodes affected and not in my blood even though my tumour was 6 cm. I’m a lucky girl and feel so pleased that my hospital allows me to make an informed choice based on current research. Good Luck to all you girls and lets see what the next few months on Zoladex brings. Xxxxxx

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Thanks Lemonlush.
For anyone under 35 they said Zoladex and AI’s really improve survival odds in the Soft trial. Its a personal choice.
I went through cancer alone and i live alone which was tough. Then i met someone when i finished radiotherapy in August. I dont want to be miserable on Zoladex when i’m finally starting to live again. It is good to feel in control of our treatment though. I’m at The Royal Marsden in Chelsea and that hospital is fab ? Good luck to eveyone on your treatment journey xxxx

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Hi Lisa

So pleased I came across your post…I feel there is light at the end of the tunnel. Just had my last Zoladex and was trying to find out if anyone had shared their experience of this and I found your very reassuring post.
I can’t wait to be pain free and hopefully lose some of the weight I have gained.
I’m still on tamoxifen for another 7 years but I can live with that.
Thanks again xx

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Hi
I’m glad I read this today!
I’m 49 and am taking tamoxifen and this week I have my 5th zoladex injection. Today I could just burst into tears constantly! I’m also having lots of major hot flushes (I’m an expat living in the Middle East and it’s still very humid at the moment so it seems I’m always in a puddle of sweat!) I’m also not sleeping well! So all in all not a good day!
But reading the above is keeping me positive that there is light at the end of the tunnel and yes if it’s keeping the cancer away I will just suck it up. X

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Did you ever loose weight after finishing Zoladex

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I am struggling big time with Zoladex and I genuinely don’t know if I can do it. I’ve come off it twice already and this is my last attempt to stick it out but I feel really awful and I live alone and don’t have anyone to provide the sort of company and support I need to be able to manage these side effects. I really don’t know what to do.

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Had my first goserelin on Monday and it really hurt! Is that normal or do you think I was tense? Also I haven’t been told the number of injections but am having for 5 years! Can I ask, did you also have zometa?

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Hi Sprout78, I had goserelin and anastrozole and zometa. I now have prostap, anastrozole and ibandronic acid instead. goserelin/zoladex does hurt more than prostap, but it depends on how skilled your nurse is! my prostap has bruised me this week.

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Hello Sprout 78

I’ve now had 5 Zolodex injections, I’ve found if the person doing it pinches into a fatty area it has less pain. It stings a bit but not overly bad.
Alternate the sides when you have it done. I have it monthly now until it no longer works as I am stage 4

I hope you cope with it

Regards
David

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Thanks for your reply, had my second one yesterday and it still really hurt and I feel like it takes them forever to do it. I don’t understand how it doesn’t hurt people. I do feel like it depends on the person doing it, the nurse did it quite low down this time. It does sting a bit afterwards but I think thats the alcohol wipe and the massive hole it leaves. Honestly I feel like they are using a blunt needle, if they were quicker it would help. I honestly don’t know what I’m going to do. It doesn’t last long but they might have to hold me down for the next one! X

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Hi Sprout78

I hope it gets easier.for you. Some are better at it than others, I now tell them to pinch out a bit of fat and inject into that. It feels blunt and awkward because it’s a pellet size of a rice grain, that they are injecting.
If you find it’s hurting all the time, tell someone so they can find a less painful way for you.
Good luck

D

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Thankyou, I will.

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