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Tamoxifen and Zoladex

57 REPLIES 57
Catb07
Member

Re: Tamoxifen and Zoladex

Hi Charlotte

Your post sounds very familiar. I'm on tamoxifen and Zolodex too and suffering a lot from the side effects - hot flushes , night sweats , low energy , brain fog etc. At this point I'm not clear which drug is causing what, and to boot I had a Zometa infusion the other day which can cause flu like symptoms - the last two times were fine but this time it hit me like a ton of bricks.

I was curious about your question about removal of ovaries. Is there any evidence that side effects are less pronounced than with Zolodex?

C
Jill1998
Community Champion

Re: Tamoxifen and Zoladex

Hi Charlotte welcome to the forum.There are some medications GP can prescribe to help with hot flushes(citrolapram is one of them,think the other is venlafexine ) if you want to give them a try.You have a double whammy with Tamoxifen and Zoladex !Hopefully others will be along soon with some advice re ovary removal .Jill
Lottie3
Member

Re: Tamoxifen and Zoladex

Hi Zuzy, I just saw your post from last year so hoping you are still on the forum! Just wondered how you are getting on since having your ovaries removed? 

 

I am taking tamoxifen and have been having Zoladex injections for the past 3 months. The hot flushes are pretty intense at night and am very tired so am considering having my ovaries removed now as don't know how much longer I can take the side effects! Would appreciate your feed back on having ovaries removed.

Lemonlush
Member

Re: Tamoxifen and Zoladex

Hi Dizzy, I finished two years on Zoladex last July. I was also on Tamoxifen but its only since finishing the Zoladex  that I can see which SE's were which. The SE's from Zoladex started very gradually, my period stopped after the second injection, I started getting hot flushes, a few at first but eventually around 20-30 per 24 hours. The leg and joint pain probably started around the 6 month mark and continued until I finished. 

I also had very erratic moods and periods of just feeling like I had the worst PMT all the time. I also put on 2 stone and could not lose it despite regular exercise and dieting. 

 

So that was the negative stuff. Since having my last injection in July 2015, my periods came back October 2015, they have been very heavy since but regular. The leg pain has completely gone, moods back to normal, I still get very mild hot flushes but that is the tamoxifen, but they are no where near as intense or often. I have lost the two stone I put on. 

 

But for what its worth, I'd do the Zoladex again as it was extra security and better than having cancer so whatever SE's you do get, its worth trying to hang in there especially when you know its only for a couple of years. 

 

Good luck, 

 

 

Peartree
Member

Re: Tamoxifen and Zoladex

Hi Memoy, my experience has been a struggle but we also all respond differently. I did make it to nearly 2.5 yrs on Zoladex but got pulled off early by my once after the SOFT results which my new once was lead in were published suggesting it may not give much benefit for me. That was after weighing up my level3 side affects. I'm still glad I did some. Each women is different and it seems to give much greater benefit to some subgroups. I'm really unsure what gave me personally each side affect. The nausea was awful for the first year. I also had joint pains. I'd suggest any women on tamoxifen check your brand. The NHS did a study based on listening to anecdotal reports on arthralgia and switching removed it in most cases. I found the same (here, both nolvadex and genox were OK, tamosyn I could hardly walk). The only thing I found that helped everything was running over 12kms (and I wasn't a runner before but very active). God knows why that was the sweet spot. After time some symptoms diminished then others worsened. I felt better to some degree after about 6 months of zoladex, less fatigue but I now have what appear to be sugar crashes if I don't eat at around 3pm with complete meltdowns. I'm nearly 4 yrs in, so whilst quol of life has been poor I keep persisting. I lost a friend I met through a BC group who was trip neg and for me it helps remind me that as crap as the side effects are that I have a choice for this medication. Everyone though needs to weigh this stuff up for themselves. I think there's lots of stuff you can play with that helps diminish some of the worst symptoms. Xo
Peartree
Member

Re: Tamoxifen and Zoladex

Thanks for the post. It's great to hear of women doing well who did this and great to hear you got in that early to it.
Peartree
Member

Re: Tamoxifen and Zoladex

Hi. You may be unaware of the tamoxifen/zoladex SOFT trial which published results in 2014. My oncologist was a lead on the study. Results came back that it was most benefit to younger women, esp under 35 that had also been selected for chemo. I feel I was in grey zone but my onc suggested it may have given me less benefit. I'm still glad I did it. Not sure I'd do it again though! Read the study and chat to your oncs about it if you're unsure.
emaj
Member

Re: Tamoxifen and Zoladex

Hi,ive been on tamoxifen for 2yrs and zolodex for just under 2yrs,i have zolodex every 3months,around about 3wks before,i feel really tired,and grumpy,cant sleep well,hot flushes about every hour,and really stiff joints,(im currently on 6monthly zolly infusions which seem to help with the stiff joint pain),just  like a large dose of PMT..then the same for about 5days after ive had zolodex,i didnt find being on tamoxifen was at all bad really,just the side effects of zolodex are not great for me,x

Memoy
Member

Re: Tamoxifen and Zoladex

Hi Peartrees, not sure if you're still active on the forums. I stumbled upon your post on BCNA about Zoladex and how it made you feel nauseous. I am going through the same thing now and when I read how you felt, I am so relieved as I thought I was just being dramatic and I am imagining my nausea and my laziness and my dislike to socialise with people. If you don't mind, I really would like to hear more about what you felt while you're on Zoladex and Tamoxifen and then on Tamoxifen alone. I am on Zoladex and Aromasin now. I am considering to switch to Tamoxifen after Year 2. Thank you. I am at melissa.yambao@gmail.com
DizzyDee
Community Champion

Re: Tamoxifen and Zoladex

Hi Sarah,
I found the tamox to be fine no side effects but i was told by my oncs that Citalopram gets rid of any side effects. Only side effect i have had thus far from Xoladex is low mood. But its nothing compared with the zoladex pretty much guaranteed to stop it recurring. If my mood doesnt lift will just get m Citalopram dose uped as on 20mg which is quite low. Think my low mood might be to do with work though. See my unsymapthtic work biss thread i put up. Hope all goes well for you. Let me know howcyou get on xxxx
Sarahd-1
Member

Re: Tamoxifen and Zoladex

Hi Dizzy. I was reading your post about Tamoxifen and Zoladex and anti depressants. I am after any tips as I will be having Tamoxifen and Zoladex in Jan and after 6 rounds of Chemo I am hoping to get away with as least amount of side effects as possible. You posts are really encouraging 🙂 xxxxx
DizzyDee
Community Champion

Re: Tamoxifen and Zoladex

Thanks for that Suco. Makes me feel better. Thats great it was 24 years ago.i was stage 2 aswell lobular. It gives us all hope. Thank you xxxx
DizzyDee
Community Champion

Re: Tamoxifen and Zoladex

I have had no side effects as yet from the two but they did say 2nd injection it can kick in. Any thoughts?? Also i was told if you dont have any side effects for first 6 months you won't full stop on both tamoxifen and zoladex.
Goldie112
Member

Re: Tamoxifen and Zoladex

Sp Suco - horrible auto correct.

Goldie112
Member

Re: Tamoxifen and Zoladex

Thanks Such that definitely helps 🙂
I need to do better on the weight thing though!!

Suco
Member

Re: Tamoxifen and Zoladex

Sorry, part of that last post of mine didn't make sense. I meant to say : zoladex and tamoxifen together had not been researched and the combination was not protocol. It's late!

Suco
Member

Re: Tamoxifen and Zoladex

In case it is of any interest to anyone, in 1991 at age 42 and with Stage 2 bc (2 2 2) I was on Zoladex injections and Tamoxifen for 2 years only. At the time the benefits of these two together was not protocol and not researched and Zoladex was new and just going through trials (I got it on the back of that). I trusted my world famous oncologist (lucky) though, so went with it. And as you see, I am still here! That cancer has never recurred but four years ago I got a completely new primary bc. Now I am on Letrazole. In 1991 I wasn't aware of side effects and when I came off the Zoladex my periods came back straight away. With letrazole I have unbearable joint problems. (Not sure why these days the treatment goes on so long but can't wait to get off it!) Hope my story cheers you up. It's been 24 years since my first treatment. I also kept to a healthy diet, kept my weight down, exercised and stayed positive.

DizzyDee
Community Champion

Re: Tamoxifen and Zoladex

Cant recommend acupuncture enough. Got 6 free sessions at the Royal Marsden. Really helped with fatigue re Rads. After that have been taught how to do the accpunture myself. Also do it for hot flushes too once a week. No hot fulshes as yet and no dimished sex druve bit will keep u infirmed. Thanks for sharing ad it jeeps us all going knowing we're not alone in this. Second injection here i come xxxxx
hopalong
Member

Re: Tamoxifen and Zoladex

I had my 2nd zoladex on friday, felt fine with 1st, just mild headache and nausea on a couple of days, but did notice some ankle swelling. Mentioned it before I got my injection and had a medical review my heart rate was up so am booked in for an ECHO and 48hr ECG.

I had to continue my tamoxifen last month but am now having a little break for the next 2 months and already feel less fatigued, so watch this space

DizzyDee
Community Champion

Re: Tamoxifen and Zoladex

Had my first Zoladex injection yesterday will keep you informed how i get on. My doctor told me to keep up the sex as you said as it combats vaginal dryness. But thecRoyal Marsden said they have loads of stuff you can take to combat that. Did read on here that the lubricant called 'Yes' is fab. Hope you're all keeping well xxxx
Peartree
Member

Re: Tamoxifen and Zoladex

Hi! I think you made a good call. I wished I'd had my dexa scan before. Depending on your age, the benefit of zoladex added to tamoxifen really varies: I'm glad I took it but my onc who was part of the global study said not necessary in my case. I started both together 6 wks after surgery. I think staggering them makes sense. I did an egg freeze and they gave me tamoxifen at the same time, theory being in protects whilst stimulating. I may never use the eggs, but I don't regret the decision to freeze because I just couldn't deal with it then as I was single and had little support.
Best wishes
P
Goldie112
Member

Re: Tamoxifen and Zoladex

Fingers crossed for your scan Hopalong. Hope you're feeling ok. Xx

hopalong
Member

Re: Tamoxifen and Zoladex

So, the fertility results are in, Inconclusive am sitting slap bang in the middle of normal range.

I was given 2 options start zoladex now, or in a month after dexa scan and bone profile blood results. I opted to wait until post scan.

Have a good weekend all

Peartree
Member

Re: Tamoxifen and Zoladex

Great stuff DizziDee! Glad you're having fun. Hopefully mine will pick up too!
Great to hear though 🙂
DizzyDee
Community Champion

Re: Tamoxifen and Zoladex

Thank you so much Peartree. My sex drive has actuly increased on tamoxifen so fingers crossed. I too am in a new relationship and dont want to be luke a zombie in that department!!! Xxxx
Peartree
Member

Re: Tamoxifen and Zoladex

Dizzeedee: sex drive back: what is that like? I can not remember! Zoladex is notorious for killing it although a few go the other way. A new partner/a lube trial a year in (tam/zol) and mine was ok but not good. I read a great book years ago about hormones and how faking it in the sense of going through the paces switches things on. I have found that's true but $&@**! It's very hard to get things going. My girly tissue is like paper: its got worse with time. Keeping it in use definitely helps though and is part of managing it. It can be very difficult though and the first year was not so bad. I speak personally as maybe others are not as badly hit. Hope that's useful.
DizzyDee
Community Champion

Re: Tamoxifen and Zoladex

Hi girls i get the results of the fertility tests in Sept. I have onc appt and possible first zoladex injection tomorrow. I have recently just got my sex drive back thanks goodness, but wanted to know will the zoladex kill it off completely? 😞 Your experiences of this would be helpful girls. Thanks Dee xxx
Goldie112
Member

Re: Tamoxifen and Zoladex

I am going tomorrow so will let you know!
Sounds complicated re the fertility treatments. My Oh will not consider me coming off treatment to go through Ivf. So we have these sad little embryos that we pay each year to keep stored. Have you looked into surrogacy or anything like that? All of it is complicated which makes me wonder whether some things are not meant to be. I am so sorry about your friend
X

Peartree
Member

Re: Tamoxifen and Zoladex

Dizzidee, how did you go with the fertility consult? If it's useful for anyone reading it I was dx at 41 and made it clear fertility was very important. I was taken seriously and did a quick egg freeze (using tamoxifen), and was lucky I got 24 eggs. I was single. I didn't go ahead with chemo but zoladex/tamoxifen after getting onkotype. We are now discussing possibly options. I don't think there is a perfect decision. I didn't consider that my cycles might take ages to restart. They do not want to do ivf to stimulate for implantbut use a natural cycle. My friend (trip neg) had a natural successful pregnancy after chemo (a few years younger) (actually got pregnant twice shortly after). She used zoladex to protect ovaries only during chemo. I have such atrophy I also didn't expect that (it got worse the longer I was on zoladex) and made sex very difficult s it's all very individual. The treatments in my mind are worth it: I hope in sharing I don't scare anyone new to this off: I just wished I'd spoken to someone who's been through the combo as I saw chemo as being the worst and wasn't prepared for what I've experienced: but again it's still worth it for me: my friend with the bub is dying and at least I have a crappy quality of life choice I can make that increases my odds of getting the same side effects when in old!

Peartree
Member

Re: Tamoxifen and Zoladex

I'll be interested to hear how that goes! My bc nurse suggested that too. It's great where the hospital funds it. Could you post back on it! 🙂
Goldie112
Member

Re: Tamoxifen and Zoladex

Thanks Peartree.
Know what you mean about the fatigue. It just makes you wonder what's realistic. I've booked for some acupuncture for next week to see if that can make me feel a bit better!! Hope it improves foe you soon xx

Peartree
Member

Re: Tamoxifen and Zoladex

Hi Goldie! There's been no major change since my last post. In terms of difference there's been little noticeable difference. I've started cramping again, no one knows why. Zoladex had fixed that for me. My levels were still very low which suggests I'm still being suppressed which I think is why I am not seeing a change.
I am still unsure what to do about the eggs for various reasons including being so fatigued the idea of parenthood horrifies me! I'm seeing a fertility nurse and discussing options. The preference is to implant in a natural cycle and take a break from tamoxifen. There's no point breaking until the levels are back up but I realise that could take ages. That might not be a bad thing. It gives me time to get it good shape and be further along in this yucky journey. It's a hard decision. Feel free to email mexo
Goldie112
Member

Re: Tamoxifen and Zoladex

Hi Peartree how are you feeling now? Do you feel better now the injections have finished? Are you working through what to do with your eggs? I have three embryos after a round of Ivf I had in between surgery and chemo but don't know what to do. Lots of thoughts. Hope you're OK. Xx

Peartree
Member

Re: Tamoxifen and Zoladex

Hi. I've just done 2.4 yrs on Zoladex and tamoxifen. My clinic was lead on the soft trial: that showed good benefit for younger (-35yrs) but less so for older. I have been pulled off it earlier: certainly no discussion of ovaries only just tamoxifen. I was 41 and single but egg harvested now they are dating I might consider when/ if I use those eggs. I'm 4 months since my last injection but levels are still very low. I've had a very crappy time on both but still think it was the best decision if I can eek out the last yrs.
DizzyDee
Community Champion

Re: Tamoxifen and Zoladex

Hi Zuzy,

I'mat Chelsea branch but the consultant i see for accupunture does Tuesdays at Sutton. Would really recommend you give her a go she's fab and you won't get free sessions after treatment and you're in open access. Xxx
Zuzy
Member

Re: Tamoxifen and Zoladex

I'm at the Marsden too! Sutton Branch, which are you? I had massage whilst I was going through treatment but can't quite get my head around acupuncture, although apparently it really helps hot flushes as well! Glad it's working for you.

My op has been postponed which means I have to have another zoladex next week, grrrrr, hopefully this really will be the last one (I've already had what I thought was the last one twice!!)

Have a good week ladies xx
DizzyDee
Community Champion

Re: Tamoxifen and Zoladex

Ive got a fertility check appointment so think oncs wont proceed with zoladex until that is sorted. I asked to be checked for my ferility status as i thought it might be something I would regret later if kids is a possibility. Dont know if i'll do anything about it yet but want to explore options.
I got a bit if knee ache last week too. I have atarted to have sessions of accunpunture at the Royal Marsden and they are helping a treat. Cannot recommend them enough!!! Xxxx Thinking of you allxxxx
Goldie112
Member

Re: Tamoxifen and Zoladex

Yay thats good 🙂 

Hopefully you will be spared. 

Im doing ok thanks. I think the last zoladex has brought on more hot flushes and I feel a bit spacey and very old and achey but still managing to work and more or less function like a human being so its all good. And it is nearly Friday hurrah!

DizzyDee
Community Champion

Re: Tamoxifen and Zoladex

Hi Goldie,
Still no side effects from tamoxifen 😊 I'll keep taking my little wonder pill to stop them. Had 2 sessions of accupunture now and have to say its got rid of the fatigue in my legs and beginning to feel mych bettter. Had a few odd twinges in my boob during and after rads and its sorted that out. Hope you are doing ok 😊xx
Goldie112
Member

Re: Tamoxifen and Zoladex

Hi Zuzy and Dizzy Dee

Thank you so much for coming back to me.

I think I will try taking some oil and I keep thinking abou accupuncture... Xxxxxxx hope you're both doing ok xx

Zuzy
Member

Re: Tamoxifen and Zoladex

Sorry, just catching up with this. I had really bad joint ache when I first started, esp knees and fingers, much better now but took around 18 months (But remember I had all my treatment during that time which I'm sure contributed to this!!) once I'd finished other treatment i took evening primrose oil and used Neals yard warming balm on my hands xx
DizzyDee
Community Champion

Re: Tamoxifen and Zoladex

Hi Goldie not started the zoladex yet prob wont till next onc appt in August. One of my oncs said that taking certain anti depressants stops the side effects of tamox. She said because i am on citrolpram that is stopping me have any side effects. Bring it on I say as to daye no side effects and I've been on it 2 months😊xxxx
I'm having accupunture at the hospital for pist rads fatigue and it can also help with pain and menopausal symptoms with hormone therapy. Worth seeing if your oncs provide it. I highly recommend it. Xxxx
Goldie112
Member

Re: Tamoxifen and Zoladex

Hi All

How are you doing? Did you decide what to do re the Zoladex vs tamoxifen? 

Just a quickie - has anyone else had any knee pain with the zoladex/Tamoxifen combo. 

My knees have progressively started to ache - it's both I think although one is worse than the other, and I was just wondering if it was normal or whether I should be concerned?

Thanks guys xxxxx

 

 

DizzyDee
Community Champion

Re: Tamoxifen and Zoladex

I would agree ask about the stats of doing Zoladex alone as opposed to the both. At the end of the day quality of life is very important. Us BC girls want to truly live again not be merely surviving! Xx
Zuzy
Member

Re: Tamoxifen and Zoladex

Ive always been on both so no idea what SEs of one on its own would be but I'd say it's def worth a try if tamoxifen is really difficult. Xx
hopalong
Member

Re: Tamoxifen and Zoladex

Morning all,

following as I am struggling with tamoxifen side effects at momment and oncologist has suggested I try zoladex. I am 42 single and childless ER 8/8 so must have (both medicaly and my own sanity) some hormone therapy.

 

Goldie112
Member

Re: Tamoxifen and Zoladex

Yes definitely. Really hope it goes ok for you xxx

DizzyDee
Community Champion

Re: Tamoxifen and Zoladex

Goldie sending you a big hug too. We can compare notes on treatment. 💗💗
Goldie112
Member

Re: Tamoxifen and Zoladex

Hi Dee (and Zuzy)
I hope you are both ok? Just felt a bit of kinship with you further to your chat.
I have been on tamoxifen for three years now and started Zoladex three months ago when I told my oncologist that my period had returned. I worked myself up a bit worrying about the Zoladex as I'd been through the hot flushes with tamoxifen but to be honest I don't think it's been that bad. Although I think my knees are starting to ache a bit (noticed that in yoga) it's nothing major. I was quite panicked about weight gain but no ballooning has happened. So I hope it's ok for you. I find I tend to panic loads with all these things and then they are much better than I fear! Also childless and have lots of things running through my head! Sending you a big hug
Xxx

DizzyDee
Community Champion

Re: Tamoxifen and Zoladex

Thank you Zuzy. Hope i have similar to you and you're right if its truly horrible can come off it. Op to have them removed i will consider if suggested at a later date. Do let me know how u get on with your surgery. Hugs Dee xxxxx