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

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Member

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

Hi. I just got the first shot of zolaex then epirubicin and cyclophosphamide and some injections accofil to support immunity. The zoladex was done in the luteal phase of my period and now i got a period again. However the bleeding was much more heavy. Did you (or did anyone) have such a reaction? I do not know if it is from zoladex or from less coagulation from the treatment? 

Member

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

I had zoladex injections for 2 years but 17 years ago. I remember the hot flushes but the other side effects were minimal. Now at 55 my periods returned after chemo and I can't have tamoxifen due to an interaction. I am back on Zoladex and letrozole too. This time I do not have the hot flushes but I was very close to the menopause anyway. What I do have is the tearfulness at the drop of a hat. Very embarrassing and frustrating. Today I needed to go and pick up my letrozole from Boots and due to a cock up they hadn't requested it from my gp. I nearly had a crying fit on the spot. This was followed by a call to Vodafone about a weird charge on my phone bill and again I was tearful. It is getting very difficult some days to be a "normal" person. I have had 7 injections so far so still another 17 to go. Hoping things will improve as my oncologist says I need my ovaries removed otherwise and after a DIEP reconstruction I really do not want more surgery.

 

I am not sure of the benefits to me but she is insistent I need both drugs.  I have had all breast tissue removed from both breasts so the chance of more breast cancer is negligible but I think it is to stope any rogue cells causing cancer elsewhere.

 

Good to know I am not the only one in tears but I wish it would stop.    

Member

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

Did you ever loose weight after finishing Zoladex

Member

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

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
Member

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

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
Community Champion

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

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
Member

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

Hi Dizzy Dee, that is great news that you only have a few months left now. At least you are still on the Tamoxifen which also does the job, you should see an improvement when you finish and start feeling a bit more normal.  I was similar to you with my original diagnosis with no nodes. They didn't give me a percentage of how much it improved the chances of it not re-occuring but of course I did lots of research online. It seemed to suggest that the combination of Zoladex and Tamoxifen didn't improve the chances massively compared to just Tamoxifen but then I'm pre-menupause and estrogen positive so I decided to stick with it because even if it improves my chances by a fraction I'll take that please. 

The zoladex did make me depressed and I finished 2 injections earlier than I should have because I just couldn't face anymore and my quality of life was pants. But I'm glad I managed to do most of the course. Hang in there everyone who is struggling with Zoladex. 

 

Lisa 

Community Champion

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

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
Community Champion

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

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
Member

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

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 

 

Member

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

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

 

Community Champion

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

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
Member

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

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

Community Champion

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

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
Member

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

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

 

Member

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

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