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

32 REPLIES 32
reme
Member

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

I had Stage 2 breast cancer, lumpectomy in March, Radiation in May, started monthly injection of Zolodex in July then added Anastrozole in Sept.  My mind started to decline rapidly and within a few weeks i also developed severe insomnia and extreme hot flashes and started having hallucination.  I stopped the Anastrozole about 3 weeks ago and within 3 days felt about 50% better.  I am stopping the Zolodex now too.  I have discussed with my oncologist and they agree a 2-3 month break is good for me to regain my mind and then decide if i want to try meds again. 

I am only 50 and worked full time during surgery and radiation treatments, but losing my mind, being exhausted all the time, not able to concentrate from the Zolodex and Anastrozole is not sustainable. 

My reoccurrence rate was 14% with the Zolodex and Anastrozole, without my doctors estimate reoccurrence about 20-22%.  I am glad i tried the meds, but 5-7% is not enough for me to stay on meds that are literally turning me into a zombie and unable to work.  Curious of others who have stopped the meds and what alternatives do you do to stay healthy, like supplements, food, life style. 

 

ejc01
Member

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

Hello, this is a really interest thread to read as I keep wondering about coming off the meds.

My first breast cancer was August 2013 when I was 35, grade 3, ER+ and I had a lumpectomy, chemo, rads followed by Tamoxifen.

I then had a recurrence 18 months later in Jan 2015 near to the surgery scar.  This time I had mastectomy with reconstruction, further chemo and then put onto zoladex injections and exemestane to eradicate the oestrogen in my body as the Tamoxifen hadn't worked.  With my surgery they removed 8 lymph nodes with 1 having disease which they said is micrometastasis.  

The original idea was that I would stay on the hormone therapy for 2 years, then it got extended to 5 years and then there was talk of going onto 10 years.  I'm 7 1/2 years through it.

However, it will be 10 years since my original diagnosis next year and I keep thinking of just stopping it all.  I've had enough of the hot flushes, foggy head, mood swings, weight gain, vaginal dryness and lack of labido.  I want my life back and feel like 10 years is more than enough time to have allowed cancer to control my life.  However, there is always this small voice in the back of my head saying it might come back.

Part of me is also scared about how my body will react to coming off the meds.  I guess its possible I could have started the menopause but who knows when I've been on the drugs so long?  I just want to feel more like the real me again, if I can remember what that feels like!  

 

Jess2
Member

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

Hello Angie,

I am having a one infusion of Zoladronic acid every 6 months which might be the same thing as you. Thank you for getting back to me xxx

Angie81
Member

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

Hi Jess

Yes, I did.  I'm also on a drug called Zometa which I believe is like a bone strengthening drug.  I'm having this every 6 months for 3 years.  Zometa is usually for women who are already in the menopause, but because of my age I.e. 40 and potentially not that far off menopause anyway and the fact that having children isn't something I want in the future now, they are decided it would be good for me to have the Zometa to protect my bones.  However, as I hadn't already gone through menopause, they are giving me the Zoladex to push me into early menopause while I'm on the Zometa, I guess because the Zometa will only work and be beneficial for women in the menopause.

So I guess the question for you Jess is whether you are also on Zometa for your bones?  As that's the only reason I am currently on Zoladex as well.

Angie xx

Jess2
Member

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

Hello,

I am was diagnosed with HER2+ and I also have Zoladex monthly but I am not sure why as I have said no to fertility treatment. Did you manage to find out why? 

Jess x

Jess2
Member

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

Hello,

I was also diagnosed with HER2+ not estrogen and I am confused as to why I am on Zoladex. The nurse told me it is the Gold standard, that they always give to people under 40 to protect their ovaries but I have chosen not to have children so I am still confused. Angie81 did you find out anymore about why you are on it? 

Jess x

onolan
Member

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

I was 44 when I was diagnosed in Nov 21 with ER/PR+ and HER2+ . Stage 2 with no spread to lymph nodes.

I didn’t have any symptoms. It was picked up on a pelvic and abdomen CT scan when I went to the doctor for a sore back.

I had a mastectomy in dec 21. I started zoladex injections every 28 days in jan to put me into menopause and stop the hormones which created the cancer. I started daily Anastrozole tablets in Feb. My period didn’t stop after 3 weeks on zoladex (like apparently it should have) and as Anastrozole is for post-menopausal they weren’t working so my onc changed me to tamoxifen. 2 months after starting the zoladex I was still bleeding so I asked my onc about what to do and they said the other option is ovary and Fallopian tube removal. I don’t have kids and I don’t want to have my own.

So that’s what I did. On May 3 I had them removed. I no longer need to have zoladex, but I’m still on tamoxifen for the next 5 years. I see my onc in a month and she may change my medication again. 
Being put into medical menopause means I have the hot flushes and I’m not sleeping (maybe having 3 x  1-2hr segments with 2 hrs between them overnight). But I don’t have to worry about having periods anymore or having to have the Zoldex injection every month for the next 5 years.

After the surgery in May I found out that I did have severe endometriosis which I didn’t know about. The cells of my ovaries had started to become abnormal and they would have been cancerous in the next year. I am so glad I’ve got them removed, but I understand that decision is not for everyone.

 

Angie81
Member

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

Hi

Was anyone else put on Zoladex for HER2 positive breast cancer....am also on herceptin to treat the HER2 positive....but I'm unsure now why I'm on Zoladex as well as isn't this for Hormone positive breast cancers?? 

Thanks

Nibi
Member

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

Hi Kibo,

Hope that your oncologist meeting was helpful! Please don’t give up! Treatment is very important!

My close friend is an oncologist too and she was a great support to me keep saying that eventually all simptoms will settled and they did! It takes time our bodies to understand what’s happening! I did have problems concentrating or remembering too,days when I was not able to sleep at all, but never gave up! I do get occasionally very bad lower back pain too , but some yoga will help with that. Now I have to make a decision do I want to stop treatment to try for a baby too, but one step at the time! If you can please try to have both for at least 2-3 years together.Let me how you are doing with the Tamoxifen tablets.

Best wishes,

Nibo

Christine Rim
Member

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

I found Letrozole to be the drug that caused all the side effects and not the zoladex so hopefully if you can move to tamoxifen then you will feel better. Letrozole is the most horrible drug imaginable to some people and it changed me completely so i gave up on it reluctantly.  I can't have tamoxifen due to a drug interaction. I have moved to Exemestane now which is less toxic but still rubbish so i have reduced it to a half dose.  In the end i had to tell my oncologist that i would not take a full tablet and if she insisted it was all or nothing then it would be nothing.

Hopefully you will start to feel a bit better soon. 

Kibo
Member

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

Thanks Nibi,

Spoke to the oncologist yesterday and I am swapping to tamoxifen. I had my zoladex last week so that will continue to have effects for at least three weeks more, so if it turns out that tamoxifen and zoladex feels manageable I will keep up the zoladex, but if not I am going to drop to tamoxifen only. I can't do with feeling so crazy, not being able to concentrate or remember, not being able to sleep or stay asleep, the hot flushes I can live with, the loss of libido and vaginal dryness is a concern. I'm single, I would still like to have a baby, but time running out to meet someone, I've already got to introduce anyone new to a fake boob and big scar, having zero interest in intimacy feels like an issue. 😕

Here's hoping the tamoxifen is kinder to me. Who knows. Onwards. 

Nibi
Member

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

Hi Kibo,

i am on Tamoxifen and Zoladex for the past 2years and also peri menopause. For the first one year I did have horrible menopause Simpsons - hot flashes all the time plus sweating and my sleeping was very bad. I have changed the brand of my tablets and now I am taking 10 mg in the morning and 10 mg in the evening, brand is Teva. Plus I am taking Sage tablets. That seems to help a lot! All menopause symptoms now are settled, but as all was so sudden I have put on a lot of weight! 

Hope this will help! Please fell free to ask any questions, will help if I can.

Best wishes,

Nibi

Kibo
Member

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

Thanks for getting back to me. OPTIMA only insists on "endocrine therapy" as far as I can tell (and I have just checked again). There was certainly nothing in the patient info leaflets and no-one had ever mentioned ovarian suppression to me until the day the consultant put me on it! 

I'm just making a list of questions to ask the consultant tomorrow and reading the latest SOFT/TEXT results that I can find. 

Optimisticmz
Member

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

Hello @Kibo

I was diagnosed with BC in 2017 and was accepted onto the OPTIMA trial and like you managed to avoid having chemotherapy. I can maybe answer some of your queries. I was older than you at diagnosis and peri menopausal. Part of the protocol for the OPTIMA trial is they want all participants to have the same "hormonal status" so a condition of the trial is that if you were pre/peri menopausal then you would have to have zoladex injected monthly. I received no additional checks whilst on the trial. Just annual mammogram and surgical review. I took zoladex for three years together with tamoxifen. At the end of three years I asked both my GP and consultant if my menopause status could be tested and I was refused. You could ask your oncologist about changing to tamoxifen but the OPTIMA trial protocol will still insist (my understanding) that you have the zoladex injections. Let me know if I can answer any other questions. Michele x

Kibo
Member

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

Oh - I just realised I'm replying to a message that was posted in 2016, but hey ho. 

I've been on letrozole and zoladex since start of December last year and I've got to admit that I am HATING it. 

I had thought I was going to be on Tamoxifen for 5-10 years, but then the oncologist put me on this duo as I'd been taking some letrozole as part of the egg-freezing protocol. 

I'm 41, pre-menopausal, and although I was told the zoladex would make me biochemically menopausal, I wasn't really warned that I would go through a sudden and severe menopause, so it was all a bit of a shock. 

I feel tired, fuzzy headed, insomniac, hot-flushes and zero sex drive. I'm also miserable or occasionally very stressed and irritable. I am not me.

After two months I had a check-in and wanted to ask the consultant why she hadn't told me about the side effects of risk of osteoporosis, but it was a registrar instead. She told me to keep going for a couple more months to see if it settled and it hasn't. Been trying to find out as much as I can about the increased risk if I swap to tamoxifen alone, and make an informed decision about it. I'm meeting the consultant (hopefully) tomorrow and hope she can help explain it.

Some people have mentioned 'predict' scores - how do I find this out? The consultant? Others mentioned it not being in their blood? Should I have had a blood test? 

I had a mastectomy (Oct), was due chemo (Dec) but escaped it due to OPTIMA trial (analysis of tumour said it was unlikely chemo would benefit me), then 15 days of radio (Jan) and hormone treatment (started Dec). How long did people wait to get a scan after the 'headline' treatments? 

I've had little continuity in care and am scared I'm slipping through the net, which is making me nervous. I can't tell if my experience is normal and I'm making a fuss, or if there were things that should have happened, and that in itself makes things hard. 

gebby
Member

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

Hi Dezdi,

I know it’s been a very long time already, but I’m in the same situation as you were before, I’m 29, no kids, but really want them in future. Would like to ask how did you managed everything with tamoxifen and do have kids 🙂 

would really appreciate if you could tell me more 

thank you 

Nibi
Member

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

Hi DizzyDee, I am 41 years old and I will have my first injection in 2 weeks time. I am on Tamoxifen almost two months. My doctor said that Zoladex  will add another 2-3% on top of the Tamoxifen. I am willing to try and see how it will go. We have always the choice to go back just to Tamoxifen. 
Hope this help.

Best wishes,

Nibi

MariaAlexa
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? 

Christine Rim
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.    

BrianM
Member

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

Did you ever loose weight after finishing Zoladex

Lynneabz
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
zuzu64
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
DizzyDee
Member

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
Lemonlush
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 

DizzyDee
Member

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
DizzyDee
Member

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
Lemonlush
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 

 

Dezdi
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

 

DizzyDee
Member

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
Pink74
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

DizzyDee
Member

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
mandy12345
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

 

Lemonlush
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