I have been on Tam and Zoladex since July 08 and generally ha a lot of the SE’s, hot flushes mood swings weight gain etc, none of them have settled, now in the past week I have become so tired I cant even work. I have never had this as one of my SE and my doc reckons that its just that. I havnt been through that paranoia stage for quite some time, but I am also suffering quite badly from back ache, my doc says that this will be down to the double mastectomy…but I had that a year ago!! I feel that I havnt slept for weeks even though I have been. Surely this isnt just down to Tamoxifen and ZoladeX?
Hi Emily. I can’t answer for the Zoladex, because I’ve only just started that, having been switched to Zoladex and Arimidex because of the SEs on tamoxifen. I only took the tam for about 4 months in total. I had a break of about a month, when I felt great and then tried another brand, but it wasn’t much better. One of the worst SEs for me on tam was extreme fatigue, coupled with lethargy and low mood. I’m a very active person and I went from exercising three times a week, to hardly being able to walk to the shops (10 minute stroll). I stopped taking tam about 18 days ago and I am starting to feel a bit more energetic, despite being on the other drugs, so I’m hoping this regime will suit me better. I did find the SEs got worse the longer I took the tamoxifen. It’s a shame BCC don’t list fatigue/depression on their info sheet for it!
Hi Emily and Sal,
Can I join you on this thread as having read your comments Sal, I feel so much better that I am not alone in suffering SE with Tamoxifen!
Have been on it for 2 months and was told by cons that SE would get worse for first 2-3 months then settle. I am having horrendous flushes at least every hour day and night and finding them quite debilitating-haven’t slept properly for ages so tired from that, but also feeling lethargic and tired generally. I too am normally a very active person but finding that the slightest effort leaves me wiped out which is worrying me a lot as I am due to return to full time work next week. Have also experienced mood swings and finding that little things leave me feeling weepy and down, and I hate feeling like that! Not sure either that my family understand how I am feeling as they see me as having finished treatment so lets get on with life!
Have seriously been thinking recently that I will take my chances and stop the tamoxifen as I can’t live my life for the next 5 years like this! Not sure what my options are?
Lynne x
Thanks Sal, sometimes I dont beleive my doctor, I think that experience is best. Lynne, My BC nurse said to me that side effects usually subside after about 6 months, unfortunately she said to me that I will probably have mine till end of treatment as they do seem to be getting worse. Sal, im sorry that you had such a bad time, I have been extremely depressed also but was told that was down to zoladex and very early menapause (was 22 when started Zoladex), I have changed my zoladex to every three months now instead of 4 weekly and depression is better. Sal, did you suffer from back/neck aches too? Still so so tired…
Lynne, I didn’t find the hot flushes etc too much of a problem. I’d been having them off and on for about 7 years. What brand are you on? Some people seem to find that changing brand helps, particularly with the hot flushes. I changed to Nolvadex D and didn’t have the headaches on that, but the other SEs were much the same. We’re all different, so it might be worth a try.
Like you I wasn’t prepared to spend 5 years feeling bad, so I was ready to give up on everything when I saw the onc 2 weeks ago. However, she said she wasn’t happy for me to have no further treatment. Despite being 53, I’m still not menopausal, so she’s put me on Zoladex and Arimidex. It’s early days yet, as I only started the Arimidex last Friday, but I do feel better and my mood especially is much brighter. Fingers crossed. I would say, don’t just give up on tamoxifen without speaking to your onc, as he/she may be able to offer you an alternative.
Emily, it’s tough for you, being so young. You want to be getting on with your life. I would say you, too, should try to speak to your onc. My onc is very aware of quality of life being important and it’s not a very nice prospect to think you are going to feel sh*tty for five years.
I haven’t had back ache, although it you’re tense and upset, that might not be helping.
Hi ladies,
Have just made an app with gp to see if it is possible to change to nolvadex d as it is a generic one I am on. Was out for coffee with 2 friends who are both experiencing the same, and one is enquiring about acupuncture as a possible relief. Anyone heard any reports on this?
Don’t see my onc until start of October but hopefully will get some help from my gp as I honestly feel I can’t go on like this. Mistakenly I thought things would improve when treatment finished…how wrong can you be??
I am 51 and had no menopausal symptoms before, but wasn’t prepared for it to be so severe. I feel that I am turning into a proper moan, and boring going on about it but it affects every aspect of your life!
Just added to the chillow post and saw your remarks on this one. Round here there is an acupuncture trial run in conjunction with Christies. I tried to go on it a while back, they’d had everybody randomised onto it so far but I was randomised into the control (ie no bl**dy acupuncture) group. Apparently, those on it seem to feel it’s great. I could have written the rest of your post as well, it’s exactly how I feel.
Salopets - hope you go well on zoladex and arimidex. Afraid I’m struggling on them as well. I’d previously struggled on tamoxifen as well. Brought forward onc’s appointment on advice of nurse in chemo ward (I’m not on chemo any more but have a monthly bone drip on the ward) to discuss everything.
Emily - I’m there with you !! It’s a cr*p feeling isn’t it ? From some of my discussions with nurses it’s the zoladex that has most to answer for and appears to be very underestimated in terms of the impact of the side effects it can have. Last time I asked about how long I would need to have the various drugs as I’d heard zoladex was a 2 yr thing and was told as long as they work - oh joy !! Backache has been a bit of a problem recently but it may be due to lowering of oestrogen as my bone scans 2 months ago showed no further spread in spine.
Well, everyone I’ll report back on my meeting etc next week - hope it is the big boss and not a registrar !!
Hi Liz, Emily and all,
Well saw GP yesterday and she was very sympathetic so am started on Nolvadex D for a month but she has also written to my cons onc to run it past her, so hopefully will get something sorted out.
Can’t make up my mind if I am tired from the tamoxifen or the sleeplessness or combination of both, but at the mo I have less energy and feel less well than when I finished chemo, which is a bit distressing! Went back to work part time between chemo and starting rads and felt fine-coped with it really well and enjoyed being back but I am due to go back fulltime on Monday and dreading it as I feel so tired and awful!
Anyway better go try and get some sleep-hopefully drop off before another wave of heat!
Lynne xx
Hello ladies
I am new to this, but have been taking tamoxifen for the last four months and I’m having SE with fatigue, tiredness, being weepy and depressed! I feel like a 90 yr old and I am only 36, have recently started back to work and on a few occasions have had to come home due to nearly falling alseep at my desk! I wasn’t aware of the different makes of tam? I thought it was a case of just taking it for five years and not having other choices. These post’s have encouraged me to see my gp.
I’ve been on Tamoxifen since February of this year, and I’m struggling to untangle the cause of what seem to be side-effects. I’m suffering with night sweats (but I had them occasionally before Tam.) so that most nights I’m not sleeping well and wake up in the morning far from refreshed & raring to go. I’m back at work full-time but not able to concentrate properly, so am really not achieveing anywhere near what I should be. On top of which every week or so I hit a real low, where the smallest problem seems overwhelming and I burst into tears at the drop of a hat.
So, I ask myself, is it the Tamoxifen, menopausal stuff (which had started anyway, but is the Tamoxifen making it worse) or fallout from the dx & treatment (physically & emotionally), or a killer cocktail of all the above?
My GP is on holiday at the moment, but when I spoke to her last week she suggested I go & see her when she returns as there are some mild antidepressants she can prescribe which are particularly good with combatting the Tamoxifen SE’s. Not that I’m keen on taking more pills, but I’ll let you know what she suggests
Phili x
When I saw Philidels post It was identical to mine - concentration is difficult some days, terrible nightsweats and now sleep with a fan near - not ideal but I can sleep and tiredness and I am not working at the moment so noticeable to me as Tamoxifen SE. I have nausea but now have tablets for that and getting to control it somewhat. I also seem to have a day when I get really angry at nothing - at the moment I am dropping things so have to say to myself “thanks for the exercise of picking it up” or I blow and destroy it or burst into tears. My GP offered me counselling sessions but I am trying to do things myself and planning my day better and not taking too much on. I also have joint problems and my ankles kill me.
I think we just need to try to plan our activities around our symptoms and this has worked well for me so far - have to go back to work so trying everything. My weight gain is slowly coming down now too. BC nurse said that things will settle after 3 months and we will know what we are left with and for me that was right.
If you are working I couldnt imagine it. Trial and error but I see a light!
Thanks fo the advice, work have been great so that’s one less pressure for me to cope with knowing I can come home if it gets too much for me. Daisy you are probably right that I should try and plann things around my symtoms and hopefully I will see the light at the end of the tunnel! Phidel please let me know what the gp says and good luck!
xx