Tamoxifen and Zoladex

Hi, my life was just beginning te resemble some sort of normality. Mx, chemo and radio done, I’ve had my first hair cut and I’m back at work, poodling along quite nicely. My SE’s from tamoxifen had started to settle down then my periods returned with a vengeance! I was told to let the hospital know when they returned so I did and they wanted me up there asap and prescibed zoladex. I had my first injection this week and feel terrible. No energy, achey and miserable. Has anyone got any experience of zoladex and tamoxifen and do the side effects settle down? I’m having herceptin too and have had that this week as well as a flu jab. It’s hard to distinguish side effects from each treatment. I would say I have no side effects from herceptin although my chemo nurse thinks the fatigue is due to that and will get worse the more herceptins I have. Something to look forward to, not!

Hi Lisa. I’ve been on Tamoxifen since late June and not liking it much. I’m also having periods and they are way too regular (2 a month). My onc also wants me to have zoladex injections but I haven’t had any yet - I’ve got until early November to decide. I’m a bit worried about the potential side effects of it since I hate the ones that tamox gives me - mainly in relation to my moods. I’m also a bit worried about how long it would take my periods to come back after stopping zoladex as we want to try to have kids after a couple of years before I’m too old.

So I would also be keen to hear how other people have fared on zoladex (and tamox) and from those who have finished their 2 years of it - did your periods come back?

(sorry for hijacking your thread lisa and sorry I don’t have any advice for you! I hope your SEs settle down though and glad to hear that most of your treatment is finished and you’re back at work).

Al x

Hi Lisa,

i am on Zoladex & although i am not suffering any aching etc i am exhausted most of the time, my Onc did say this was 1 of the side effects due to sudden depletion of Oestrogen & that it will get better, i am more tired now than when i was going through Chemo/Rads but have also recently returned to work so may be a combination of both, how long have you been on Tamoxifen as that can give you joint problems/aches etc ? i was taken off tamoxifen because i have a blood clot & am on Letrazole now & fingers crossed so far so good apart from tiredness.

Hopefully things will settle down soon for you as to be fair you have had a lot of things going on & as you say is hard to distinguish between them all.

Sarah.xxx

I was put on Zoladex after my periods still continuing after chemo and whilst on Tamoxifen (I am 31yrs). I had 2 lots of Zoladex and has to stop as I was feeling so terrible! I would literally be wiped out for about a week and half of the month, aching, exhausted and feeling really low.

I took the decision to stop as I couldn’t carry on feeling that bad. I may have just not reacted well to it and I know we are all very different. I have not had any problems on Tamoxifen when others have.

I think the next step for me is to have ovaries removed.

Paula xx

Thanks for posting ladies, I was totally wiped out last week and shocked really that I fell back into the pit of fatigue. I’m pleased to say that the fog is beginning to lift and I’m feeling less exhausted now. Am hoping that things will settle down as they did with tamoxifen.

Al-Sorry to hear you’re not getting on with tamoxifen. Have you thought about taking any supplements? Maybe adding zoladex won’t add to your SE’s? What’syour oncs recommendation about whether to have it or not. Mine said there is no data to support taking zoladex and tamoxifen is more effective than just tamoxifen.Thereare trials going on but data won’t be available for 2 years. It was recommended to me as they say I am high risk of recurrence due to size (mine was a monster 76mm), I had 3 nodes involved, HER2+ and LVI. Has your Onc discussed risk factors with you. I don’t know about periods returning after zoladex only that they are expected to. Maybe give the helpline a ring?

Sarah-sorry to hear you’ve got a blood clot. Do you have to take meds to disperse it? Hope that things stay settled for you on letrozole and that the tiredness lifts.I have been on tamoxifen for 2 months and initially I was tired and achey but it lasted for a few weeks only and I was feeling pretty good until I had the zoladex. Hopefully things will settle down again.

Paula-sorry you suffered so bad with zoladex. I think it may well be over treatment to have both zoladex and tamoxifen. It’s a shame there is no data to support it. Has your onc recommended that you have your ovaries removed?

Thanks again for posting. Better take my tamoxifen and go to bed!!

Hi Lisa,

Oh dear. Doesn’t sound much fun!! I’m starting Tamoxifen next week and then Zoladex in a couple of months (onc said to get used to the Tamoxifen side effects first).

There were a couple of girls on the London seminar who also came off the Zoladex because they couldn’t tolerate it - I don’t know if you heard them talk about it?

Thank goodness that they’ve got all of this amazing medicine to make us better - but so rubbish that it all makes us feel like cr*p! And that the sympathy and understanding seems to finish with the final chemo - after that everyone assumes you’re fine and it’s plain sailing from then on… Not that I can blame them - I had no idea about any of this before.

Are you still losing weight? Not that you needed to - but we were talking about it at CM’s and I’ve read that Tamoxifen makes it harder to lose weight and can make it very easy to put weight on?

Big hugs,

x

PS - Saw your pics on Facebook and have serious hair envy. You look gorgeous!! Proper hair style and everything!! x

Hi Lisa. I’m not sure what supplements we’re allowed to take, or what might help to be honest. My oncologist suggested I should have zoladex when I mentioned I was still having periods. I don’t really remember it being talked about before, but maybe she thought the chemo would stop my periods. She did discuss risk factors but not specifically with or without zoladex. My tumour was small (18mm) and grade 2, but it had spread to my nodes. I’ve got another appointment with her next week so I’ll see what she says re the risks with or without it. I’ll probably at least give it a shot - if SEs no worse than tamoxifen then will take it.

Hope you continue to get out of that tired place and back on with your life!

Paula - would having your ovaries removed not have the same side effects as zoladex, since zoladex suppresses the ovaries? Not sure, but don’t think having ovaries out is side-effect free unfortunately.

Sandytoes - good luck with your tamoxifen next week. I’m sure plenty of people have no side-effects from it, so you may be pleasantly surprised!

Al x

Hi and sorry for taking ages to respond.
Sandytoes- I really didn’t have many problems with tamoxifen, thefirst few weeks were a bit rough, I was very emotional and felt sick, sweaty and achey but everything settled down after a few weeks. I was left with achey legs and feet,but it wasn’t too bad.I’m really hoping things willsettle down with the zoladex too. I haven’t put any weight on with tamoxifen. I was worried that I would but in fact I have lost 5 kgs. Think it’s because I’m more active now and have ditched the coke and doughnuts. My BCN said tamoxifen will not make you put on weight (although some ladies on it say otherwise). She was quite short with me and said you’ll put on weight if you eat too much and don’t exercise and if you do put on weight, it will go straight to the tummy area. Thanks for the comments about my hair, it’s the only bit about me that I like at the moment! thinking of dying it white blonde. Have you started tamoxifen now? Hope your se’s are tiny ones, if any.

Al- I think you’re right to give the zoladex a go. You can always stop it if it becomes intolerable. Have things settled down for you nowwith the tamoxifen or is it still the same? Are you back at work and back to normal? I have been on rehab hours but started fulltime this week. I’m struggling if I’m honest and really tired, maybe I need a holiday! My Onc said I could take cod liver oil, glucosamine and evening primrose oil to help with the menopausal type side effects. It’s something I’m going to considerif things don’t settle down with the zoladex. I want to try and give my body a chance to adjust first.

I’m off to see my surgeon this afternoon-I’m hoping to get some idea when the recon might happen. I suspect it won’t be until at least june next year. I’m on herceptin until May and some ladies have said they will not give me a recon until herceptin finishes :frowning:

Lisa xxxx

Hi Lisa

Had my appointment with my Onc on Tues and we have decided that I’ll give zoladex a shot. She said if I’m worried about it affecting my fertility (ie periods taking a long time to come back) that I could just take it for a year, then by the time I’ve finished tamoxifen (hoping to just do 2 years of that), hopefully they will have come back, if they’re going to.

She said that if I can’t tolerate it (and she said that quite a few of her patients can’t – mainly due to the fatigue it gives them) then I can stop and the fatigue should go in about 6 weeks. Though I still have some fatigue from rads etc so I’m not sure how I’ll know which fatigue it is!

I’m a bit apprehensive about starting it, but will be glad to get rid of the very frequent and painful periods. Still not particularly enjoying the tamoxifen. I am back at work on a phased return, though now I’m back I’ve been faced with a change (office is closing so have to either work from home or take redundancy – excellent timing eh?!). I got to the stage where I was fed up of my low moods and went to my doc and got some anti-depressants. Been on them for 2 weeks. No major change with my mood yet but appetite is huge (which is ok as I’d totally lost my appetite and am already quite skinny) and I feel like a zombie during the day. But it takes 4-6 weeks to be effective I think, so I’ll bear with it for a while longer.

My Onc is going to delay the start of zoladex until my AD’s have started working as she doesn’t want me to get worse before I’ve got better. So I’ve got about a month’s grace before I get my first injection…. Time to get used to the zombie feelings, decide what to do about my job, and hopefully shift this fatigue. I’ve got lots of holidays to use up so am taking lots of days off so I work a shorter week, so that helps. I reckon you should definitely have a holiday!

Good luck with your recon discussion this afternoon Lisa – let us know how you get on. Do you want to get it done asap or do you think you can cope with the delay? Glad you like your hair. Think I need to dye mine too but there isn’t much I can do about the horrible curliness of it yet (its way to short to straighten). Tempted to get it cut shorter as I quite liked it before it got wavy!

Sandytoes – have you started your tamoxifen yet?

Al x

Al

I just wanted to say that I have been on Zoladex for about 6 weeks now (had 2 injections). I am also on Femara as Tamoxifen was not effective with me (I was premenopausal hence the Zoladex).

Anyway the purpose of this post is to say that, so far, for me, it has not been too bad. I know we are all different and the side effects vary very much so what I say may not be of any relevance to you. It was a really big step for me to accept that I had to start taking Zoladex (indeed I was offered it when I started taking Tamoxifen and refused it.) I started rads at the same time as the Zoladex and Femara combination.

I am not saying that it is free from side effects, by any means. But for me it felt so very hard to take and it has not been as bad as I expected, and I found it encouraging when I read posts from women who said they had coped ok with it. I should add that the onc said I can expect it to take up to 3 months for it to start taking full effect. I have had one period on the Zoladex so far and am hoping that will be the last one.

best wishes for the side effects,

Claire2010

Hi,

Al-I think you’ve made the right decision to give the zoladex a go. Hoopefully ,you’ll get no more side effects as I think that you’ve had more than your fair share of them. Have the AD’s started to work yet? Do you feelany better? I’m in a similar situation at work, there is no longer enough work in my department in my specialism so I’m going to work in another office 4 days a week and then my normal job 1 day at week. Other than this change, my work have been really supportive. My memory and concentration is rubbish and I know myself that I am not producing work tothe standard I used to. I have been working full time (well apart from the herceptin and hospital app’ts) for 2 weeks now and I am just about managing it.
I am a real miserable cow at the moment and just can’t shake myself out of it. Most evenings I think ‘at least I’ve made it through another day’. I actually cried to my GP on Monday. He is really nice but I don’t think he’s got many BC patients. He told memost women take tamoxifen as if it’s just a vitamin supplement and that I had 3 choices with zoladex,to continue with it and put up with the side effects,stop taking it or continue with it and take AD’s. I am going to see what my onc team say about it as I’m back up the hospital again next week.

Good news about my recon- my surgeon is referring me to plastic surgeons now as there’s a waiting list to have the recon. She said that they won’t do the recon until a year after rads, so by the time i get to the top of the list, my year will be up. She thinks I willhave a recon using my tummy fat but that I won’t have enough fat to make one the same size as my good one (which has been reduced). she said she wouldn’t suggest a further reduction as the size I have suits my frame so it’s likely that I’ll have liposuction on my thighs too. Although I really to have my recon,I just don’t think I could go through it any sooner than they have suggested. I desperately want to feel normal again and have a way to go on that front yet. I think I might have alook at some complementary therapies?

Claire-Thanks for posting. It’s really good to hear that the zoladex hasn’t been too bad for you. Hopefully, my side effects are temporary and will settle down

Big hugs xxxx

Hi

I have both of these and although there are side effects, I’ve learnt to manage them. All except the weight gain that is. I do on average 4 full on hours of proper exercise a week, I teach PE 4 hours a week ( maths the rest) and eat a very balanced healthy diet but I’ve still managed to gain about a stone.

I’m now at the point where I am worried about coming off the Zoladex as I only have 1 more 10.8mg one to go. I know everyone has a different tolerance to pain etc but I’ve not found the zoladex a prob at all. Just take a deep breath and exhale through your mouth when they stick it in, can truthfully say it does not hurt ( or maybe I just don’t feel pain through the layer if blubber I have gained!!)

With the hot flushes ( I call it my own micro climate) when I feel it starting I take my jumper/scarf and socks off and drink water. They have reduced a lot as time has gone on.

Go for it, the more we can do to reduce it coming back the better.

Em x

Hi Em. I picked up my zoladex from the chemist yesterday, though I haven’t yet made an appointment for the nurse to inject it…

I’m a bit confused about the dose now - I thought I’d picked up 3 months supply as I got 3 boxes of the stuff, each box has a 3.6mg injection. But are you on 10.8mg each month? I don’t fancy having 3 injections of it every month. But maybe I’ve just been given a lower dose?

The doctor prescribing it said I should try it without any anaesthetic cream for the first time and if I can’t handle the pain then she can give me some Emla cream. I’m not so worried about the pain of injecting it, more about what it does to you afterwards! Though once I’ve seen the size of the needle, perhaps I’ll change my mind!

Lisa - Sorry I didn’t reply earlier. Haven’t been on the site much and lost this thread. I’ve still not really noticed any effect of the AD’s other than on my appetite. I’ve just been given another 4 weeks worth, at the same dose, as they want me to get over the zombie/tiredness stage before giving me a higher dose. If I’m not having any joy (no pun intended) after the next 4 weeks I’ll prob just stop them, or see if I can try something else. Would rather have some energy back. I wouldn’t worry about crying to your GP - i do it often. In fact, am blubbing far too much, hence the AD’s not really doing their job. How did you get on with your oncology appointment? Have you decided to stay on Zoladex, or try ADs? Glad to hear you’ve been given some good news about your recon. I know what you mean about wanting to feel normal again. I think we have to get used to a different sort of normal. Complementary therapies are probably a good idea - I’ve been having some appointments with a complementary therapist at the hospital (we get offered 4 appointments for free) - have had reflexology twice and the first appointment was just an hour of chatting and blubbing! But still useful. For my last session I might try reiki or massage.

Claire - thanks for the encouragement - I like to go in thinking the worst, then if its not as bad, its a pleasant surprise. Its nice to hear that not everyone gets really bad SE’s from it though.

Al xx

Hi

If you have it 4 weekly then it’s the 3.6mg but if you have it 12 weekly it’s 10.8mg. I started on the 4 weekly one as I liked that constant contact with my doctor having gone form almost weekly contact with a health care professional all through treatment to virtually nothing when treatment finished. When I got more confidence I went onto the 12 weekly one. The needle is a bit bigger for the 10.8mg but it doesn’t hurt anymore.

It’s not like a normal injection, in the syringe is a waxey pellet, they put the needle in then click it and it deposits the little waxey pellet in your tummy. My doctor alternates left and right each time.

It doesn’t take long and no pain afterwards, I had it yesterday morning at 7:30 before work and forgot about it until I went home and took the plaster off.

Good luck

Em x

Ah, that makes sense. Thanks for clearing up my confusion Em!

Al x

Hi all,
I’ve had my second Zoladex injection yesterday and so far all is going well.
Am a bit confused about the frequency of injections though. My oncologist says the 3 monthly injections are only used for men with prostate cancer and that women with breast cancer should only have the 4 weekly injections. Can anyone shed any light on this? I would definitely prefer to have less frequent injections if that was a possibility!
x

Hi
I’ve been on zoladex since just before my chemo started in august but haven’t had tamoxifen. I don’t feel like I’ve had any side effects from the zoladex but have been dealing with all the SE’s from chemo so maybe there were some mixed into that? I spoke to my onc yesterday who advised she wants to keep me on zoladex for 2 years and then I can come off it - I’ll also be on hormone therapy for 5 years as well.
Caroline x

Hi

I don’t think there is any difference between the 3.6mg and 10.8mg apart from it being a bit bigger as it has to release for longer. As far as I know there is nothing else. To be fair I’m the only one at my surgery having it for breast cancer so fingers crossed it’s ok to have it 12 weekly. Other ladies on here have it 3 monthly.

x

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