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Zoladex and Exemestane - Help!

19 REPLIES 19
Lottie3
Member

Re: Zoladex and Exemestane - Help!

Hi Memoy, I have just joined the forum and saw your post about Zoladex. I was just wondering how you are getting on and if you are still having the monthly injections?

 

I have been taking tamoxifen for 8 months and monthly Zoladex injections for the past 3 months. On the tamoxifen alone the hot flushes calmed down fairly quickly but on the Zoladex they returned with a vengeance and are pretty fierce at night. I am thinking about having my ovaries removed instead so I don't have to have the injections anymore. The hot flushes may still be as bad if I go for surgery but I definitely feel very tired/no energy and tearful since having the Zoladex injections so I sympathise with you completely. 

 

I am also having acupuncture which really helped me through radiotherapy but doesn't seem to be helping as much for the current side effects. Have just started taking vitamin E as that is meant to help with hot flushes but will wait and see! How are your alternative therapies going - any joy?

Ruth Hill
Member

Re: Zoladex and Exemestane - Help!

Hello dear, 

after my surgery and radiation I was given letrozole . After eight weeks I was ready to give up the hormone therapy and take my chances with the chances with another cancer. 

I was a sweating , crying, screaming mess. 

After ten days off I was given exemestane and I have been in good fettle. Apart from muscle cramps and a strange rash on my back.

now if someone can tell me how to get over radiation damage to my lung I would be very grateful .xx

 

Memoy
Member

Re: Zoladex and Exemestane - Help!

Hi J/everyone

I have been on Zoladex and Aromasin for 1 year and 3 months now. And I have to say I am also struggling. I feel like a very different person now... I used to be very social. But now I mostly keep to myself. I also used to be outspoken at work but now I bow my head and just go about my day.

I am also feeling nauseous most mornings and I don't have energy. I would wake up and then stay in bed for about 3 hours before mustering up the energy to get up. I still do exercises and sometimes I feel without pole dancing and Pilates, my energy levels would be so much worse. I start classes feeling sluggish and at the end because I force myself, I do feel better. But I can't really workout 8 hours a day so if I'm not in the studio, I'm back to my usual "bleh" self.

I'm trying a lot of things now. Acupuncture, lots of supplements (Omega 3, Coq10). Still trying to find the perfect thing that can work.

I'm 33. Be great to hear how others are doing as im seriously considering getting off hormone therapy now.

Thank you
AbiS
Member

Re: Zoladex and Exemestane - Help!

Hi all, just sharing my experience with Zoladex and Exemestane... I was started on monthly Zoladex injections last October before I started my chemo. My onco said it has been shown that by shutting the ovaries down prior to chemo, it may protect them from been damaged by the drugs. I had just turned 36 and still want to possibly try for a baby in the future. I was surprised that I didn't suffer with too many side effects. Just hot flushes really. I got one bleed 2 weeks after my first injection, but haven't had a period since. When I started my radiotherapy, I did get very low and depressed but I would definitely put that down to the fatigue from the radio as opposed to the Zoladex. I started Aromasin (Exemestane) on March 1st on top of the Zolidex. At this time I was getting severe hot flushes and not sleeping well at all but again I think this was all combined with the after effects of chemo and the radiotherapy. I finished radio 12 days ago and no longer feel depressed. However I am seeing a counseller in my hospital to help me process everything. It's a great help to talk. Since radio has finished, my hot flushes have also decreased. So in all, I've had 6 Zoladex injections and been on aromasin for one month. So far so good. I'm noticing slight stiffness in my joints so my onco has asked me to try glucosamine and chondroitin supplements and I'm taking calcichew-D3 Forte for my bone health. I'm to stay on this Zolidex:aromasin combo for 5 years unless I want to come off and try for a baby. My Onco has told me that she has seen women in the past do this and been successful so fingers crossed. I'm wondering has any others on this site been able to have children after breast cancer and chemo. I was told by a consultant in a fertility clinic as well as my Onco that freezing eggs wasn't very successful so I didn't go down that route.
hopalong
Member

Re: Zoladex and Exemestane - Help!

Had my zoladex yesterday, so far so good Woman Very Happy

Will keep you informned

 

875020079
Member

Re: Zoladex and Exemestane - Help!

Absolutely you have hit the nail right on the head there. Quality of life and to feel normal again, I hope we all can get that and it's not always going to happen that we get the right hormone treatment straight away, everyone is different and different regimes suit different individuals so if you're lucky enough to get it right first time that's a big bonus, but for a lot of us things are going to need tweaking until it's right. 

 

Good luck Hopalong, I hope the Zoladex is ok for you - I still don't even know what it was that caused me to feel so ill, Oncologist might even suggest trying the Zoladex again after a few months break but for now, risky though it is, I'm just enjoying not taking anything! 

hopalong
Member

Re: Zoladex and Exemestane - Help!

I've got my first zoladex tomorrow, have managed to persuade my oncologist to let me try it due to intollerable fatigue and pain on tamoxifen, not to mention over 100 sweats not just flushes per week.

 

I will heve it for 3 months then get a clinic review. The 1st month I need to continue the tamoxifen then he has again with reluctance agreed I can take the zoladex alone for the next 2 months so I can establish what is causing my side effects. After this 3 months we will decide on a plan going forward either zoladex (if I tolerate it) and tamoxifen or zoladex and exemesthasone.

 

Feeling nervous but want to give it a try, I need a quality of life and to feel normal again.

Smurf77
Member

Re: Zoladex and Exemestane - Help!

Crikey sounds like you're all going or been through it with the zoladax. I'm due to have my first injection tomorrow and I'm really not looking forward to it!

One month into the Exemestane and I'm finding the flushes are getting worse and managed about 2hrs sleep in total last night, I saw my GP yesterday and he has prescribed me some beta blockers that are non hormonal, my BP is up because of the lack of sleep and daily hospital appointments anyway but these should also suppress the glands (or whatever it is that causes the flushes) from overheating and then secreting the sweat...I'll try anything at the moment!!

I hope your appetite comes back soon, I'm never hungry at mo but still eating as if the food was going out of fashion ;-/

S x
875020079
Member

Re: Zoladex and Exemestane - Help!

Hi all

 

it's now been about 10 weeks since I stopped Exemestane and about 9 since the last Zoladex injection. I feel calmer, less tearful, although I do cry more than I ever used to, it's now just shedding a few tears now & then, as opposed to uncontrolled sobbing and unmanageable anxiety and stress that Inwas having before, not me at all. Work colleagues say I was like a completely different person before, which is alarming. 

I still don't have an appetite, but am forcing myself to eat little and often as I have got so thin. The insomnia was one of the worst things, and it seems as if quite a few off us experience that - I've now got sleeping tablets (Zopiclone) which help a lot with that.

i still don't know what I am going to do about hormone treatment in thenlong term, am due to see onc in 3 weeks, but I think my periods might restart before then as I feel quite pre-menstrual at present, and if that's the case he is not going to like that! 

 

J x

Tratra03
Member

Re: Zoladex and Exemestane - Help!

I have been on Femara for the past 7 months and MD stopped the Femara and started aromasin due to severe joint pains I have been having. So I am wondering does aromasin decrease joint pains as opposed to Femara? By the way I only sleep an average of 4-5 hours in a 24 hour period...help
Smurf77
Member

Re: Zoladex and Exemestane - Help!

Hi Lorca,

My BC was receptor positive but when I spoke to ONC about my hot flushes when I was given my prescription for Exemestane she said to try them
...argh, I don't know what to do now!

Will definitely be speaking to my ONC ASAP tho!!

Stacey x
familytree
Member

Re: Zoladex and Exemestane - Help!

Hi 

I am wondering why you have been told to take evening primrose if your bc was hormone receptive as I thought they didn't recommend them? if you are triple negative then I have heard these herbal pills are amazing but I would check with your onc before purchasing. It's all such a pain in the bleep! isn't it but we will get through it.. we are woman after all 🙂 x Love Lorna x

 

http://www.nutrition-fx.com/?gclid=CIGTwZTQiMgCFSMcwwodk0YAjQ

Smurf77
Member

Re: Zoladex and Exemestane - Help!

Hi Ladies,

 

So sorry to hear you are both struggling with your hormone treatment.

 

I started taking Exemestane two weeks ago and started my Radio today and am feeling fine (apart from the horrid hot/cold sweats) but I am now really worried about starting my injections that i'll have to have every four weeks, first one due in two weeks time. I can't remember what it was called but I am assuming it's Zoladex as my ONC said this would be the better treatement for me, being 38 and not yet started my menopause. I think I need a chat with my ONC before I start the injections now though as I am not liking the sound of the side effects, this b*stard illness has already done enough damage without the possible need for antidepressants for the foreseeable.

 

At the moment I am hardly getting any sleep due to the hot (but mainly cold now) flushes, I was advised to start taking evening primrose which I have also started taking but it doesn't stop them so I wondered if you can advise any wonder drugs/supplements that will cut them down and enable me to at least attempt to not be a zombie everyday?! 

 

 

Any advise will be greatly appreciated and eagerly received 🙂

 

Stacey x

 

familytree
Member

Re: Zoladex and Exemestane - Help!

Wow bet you're not! 4 days ago? Ridiculous. I'm taking citalopram 10 ml initially move up to 20 after a week or so. I was so scared of taking them but like you thought I had to get on top of this sinking feeling. Saying that I cut them in quaters initially thinking if you have to come off them slowly then I will introduce them to my system slowly. Lol. Friends on them laughed but hate taking anything.Will keep you posted how I feel but takes 2/3 weeks or longer to kick in so keep that in mind if you feel you're getting lower. Big cyber hugs X x
875020079
Member

Re: Zoladex and Exemestane - Help!

Thank you so much Lorna, I think you are right it is a combination of everything. May I ask what antidepressants you were given? They have been suggested to me by Practice Nurse at GP surgery but I have resisted so far, I am increasingly wondering why. . . now, like you I willing to try anything to feel better.

 

left message with BCN's 4 days ago saying that I am planning to stop the Zoladex and asking for advice but no response as yet, see why I am not impressed with local breast care team!

 

J x

familytree
Member

Re: Zoladex and Exemestane - Help!

J sorry to hear you are struggling. x sounds like an accumulation of things to me.. so many changes in personal life, physically and mentally. Of course its going to take it's toll. When I was diagnosed I asked my Dr for anti depressants in case the BC journey left me depressed.. and it did! god it would test the strongest of people. Started taking in under duress but had enough of feeling so detached from the world and so low. Not kicked in yet but I'm willing to give it a go. I hope you get the care you deserve..sending love Lorna x
875020079
Member

Re: Zoladex and Exemestane - Help!

Have decided to stop the lot and see what happens. Cancer was 8/8 ER so a little bit worried about what will happen but I can't go on like this . If I notice a marked improvement then it must have been the Zoladex and at least I'll know,

875020079
Member

Re: Zoladex and Exemestane - Help!

Thanks ST1 yes it really does help. I think I was putting myself under great pressure to stay on  Zoladex and Exemestane because I know it is the current best evidence-based treatment for premenopausal breast cancer, but what is the point if it makes me this unhappy and puts me off work? It's just working out which one it is and after 6 weeks off Exemestane, I am now thinking I have to try stopping the Zoladex, but how long should it take to clear out of my system and for me to notice a difference if it is that?  

ST1
Member

Re: Zoladex and Exemestane - Help!

Hi

My situation was very similar ,I had chemo and radiotherapy for ER breast cancer I then went on zoladex injections ,a few days after having the injection I noticedI was feeling a bit low ,I just put it down to everything I had been through catching up with me .I then started on anastrozole I began to feel awful very depressed ,anxious crying over the least little thing I thought I was going mad.

This went on for about 5 weeks I then went back to see oncologist ,she told me to stop taking anastrozole and zoladex for 3 weeks and then just have the zoladex injection to see which one was causing the side effects.during the time a wasn't taking the meds I felt back to normal.

When it was time to have the zoladex again I just couldn't face having it  knowing that it could send me back into depression again so I decide not to have it .

I have been on tamoxifen for 3 weeks I have had minimal side effects hot flushes a bit of joint pain cured with ibuprofen, I feel a lot better

Forgot to mention I am 44

Hope this helps .

875020079
Member

Zoladex and Exemestane - Help!

Hi everyone

 

I'm hoping someone might be able to offer some insight or advice - I am in a bit of a mess.

 

After surgery, FEC chemo and radiotherapy for ER breast cancer, My oncologist started me on monthly Zoladex injections in April, and a month later added in Exemestane. I was 48 when diagnosed, regular periods etc no sign of menopause although my periods stopped dead after my first dose of chemo and that was that. 

I had a bit of time off after the surgery, but managed to work all through chemo, radiotherapy, and have just kept going through it all, it wasn't always easy but I did it. 

 

Two weeks after the first Zoladex injection, something happened and I ended up sobbing most of the weekend, I wondered at the time if my response was a bit disproportionate and maybe secondary to menopausal things as I am not given to emotional outbursts, but anyway I soldiered on, I'll get through it, I thought, it's bound to take time to acclimatise.

Over the next 2/3 months things got worse. I worried, I got stressed, tearful, anxious, couldn't sleep, couldn't concentrate on anything and lost my appetite so badly that I hardly ate. I stopped listening to music, avoided my friends, just felt very low and generally rubbish. Tried talking to the BCNs, but the only one I got on with has retired, the others just aren't very good frankly, and don't seem to be able to say anything that I haven't thought of myself. I talked to my GP and the nurse at my GP practice, and they are lovely and are trying to help, I have meds now to help me sleep, but my query to you ladies really is about the hormone therapy itself. I saw my oncologist 6 weeks ago and told him everything, and he stopped the Exemestane, but it hasn't made much difference. I saw him again nearly 2 weeks ago and he said "ok maybe it's the Zoladex" but anyway I have stayed off Exemestane now for 6 weeks and still feel crap. I am due Zoladex again next week, but thinking I will not have it, and see if I feel any better.

 

There are other things happening in my life at the moment, I have had a bereavement, my daughter is leaving to start uni, I have had to have a CT scan this week due to the weight loss and pain in my breast and my bones/joints but to be honest I am not concerned about recurrence as the weight loss is explainable as I hardly eat, and the pains are due to the sudden menopause I think, a lot of it is aches and pains that had anyway that are worse now as I've got no oestrogen - anyway it's all being fully checked out and I'm not worried about that. Counselling doesn't appeal to me because I do get fed up of talking about it and I do feel as if there is a physiological cause of the way I feel - I don't know, as soon as I started thinking about stopping the Zoladex I felt a bit better - obviously I am involving the BCNs and the oncologist in these decisions.

 

But has anyone else had problems on these two types of hormone treatment and if so, what helped? If anyone has stopped or changed from Zoladex & Exemestane to something else, how long did things take to improve? I'm actually off work at the moment, I can't believe I managed to work through it all and have only now had to go off sick! I do wonder if the way I feel is just down to a combination of things, but people that know me and who are also medically qualified have said that the things I'm describing sound very hormonal, and I know that I normally cope with life a lot better than this!

 

Thank you so much for reading and if anyone has any experience to share, I'd be very grateful!

 

J x