seeking a bit of advice. I’ve been on Tamoxifen since April 09 and have recently had to change from Nolvadex (as it’s been discontinued) to APS. I have always struggled with hot flushes and weight gain since the start but since changing to APS have found the hot flushes unbearable and I am now in the depths of depression, something I didn’t suffer from on Nolvadex.
Since finshing treatment, Chemo and Rads I have taken to exercise and am attending the gym at least 5 times a week and am about to start triathalon training but I cannot shift the stone I put on since treatment.
Is it possible to take a ‘holiday’ from Tamoxifen (Iwas highly ER/PR positive), say 3 months, to have a rest from the flushes and maybe loose some weight ? Is it indeed adviseable.
Your comments and experiences would be welcome. Thanks in advance.
Please speak with your medical team, there are medications which can help with the flushes & depression. Stopping tamoxifen without consultation is probably not wise. I take clonidine and amitriptyline (I am on APS also) and there are many ladies on here who are on different medication to minimise the SE’s you are having. Maybe a call to the helpline could help, too! Big Hug, Tina x
hi gingery,
i started tamoxifen march 2010 started on wockhardt then aps then generics…ALL horrific SE’s (tho generics beat the rest for the worst!) I tried clonidine, fluoxitine and venlaflaxine to help with SE’s but all had additional SE’s to deal with and i had just had enough of popping pills upon pills upon pills.
I stopped taking tamox three weeks ago but was still on zoladex (as unfortunately unable to gouge the implant out - though i was very tempted to try)
I am now on a two month break from all treatment (having consulted my consultant!) and life is returning to ‘normal’.
Have i made the right decision…? who knows…? will i go back on them…? The way i feel at the mo, probably not.
It was NOT a difficult choice for me to make under my personal circumstances, and i’m not sure i would have changed my mind regardless of what the professionals said but i am glad i discussed it with my consultant and gp - both have been very supportive and understanding…
i strongly recommend you discuss it with your onc to weigh up the pro’s and cons before making a decision -they may suprise you!
on a note of interest, any idea why they discontinued Nolvadex? - it sounds a lot better than the others!
Hi Just wanted to confess that I have stopped taking my tamoxifen for what will be the fifth day and I can honestly say that my mood is lifted, I had been taking tamoxifen since September 2010 and it made me feel awful both phycially and emotionally. Have I done the right thing I don’t know, I haven’t spoke to anyone in the health side of my decision.
I had bc recurrence 5 years ago and after treatment was put on Tamoxifen, I took it for almost a year and felt awful. I decided to stop and discussed it with my consultant, she was OK with it and said that it does’nt work for everyone, in fact it was a very small percentage she quoted. The thing is they don’t know who they will work for so are given to everyone.
3 years later I had a further recurrence, will never know whether if I had carried on taking Tamoxifen it would have made any difference, but I blamed myself anyway. I was then put on Fermara which did’nt work for me as I had a further recurrence last year and have been put back on Tamoxifen as they work differently.
I dare not stop again just in case they do work, I just have to remember how I felt when being given the news that the cancer was back and it does’nt seem so bad.
Hi Janice read your post with interest, as along with he others on this forum,I just felt that I had gone from a vibrant indivdual to someone with no energy/interest/confidence etc etc. My diagnosis was nearly a year next month BC HER2positive, I actually felt ok during chemo which was given first, then had MX in August and prescirbed tamox in September, since then I just went downhill, finished radio in November and receving herceiptin every three weeks until August this year. I know that the chemo put me into early menopause but it was not until i started on tamox that I experienced any SE’s, the hot flashes were horrendous 7/8times a day, weight gain and really low mood. As I said its only been five days but my mood seems better although I have noticed slight bleeding.
I was told to stop Tamoxifen for about a month 3 years post first diagnosis when they needed to check out my uterus lining which was hugely thickened. Luckily that was fine and they then put me on exemestane. A year later I had a recurrence …whas it because of the 4 week gap? I don’t know. Am now on Arimidex and take them religiously even though they give me vile hot flushes. I agree with Jan - it isn’t (for me) worth the risk of stopping.
You say you haven’t discussed stopping taking the tamoxifen with your medical team. Could we suggest that you do speak to them and explain the side effects you’ve been suffering.
If you would like to talk to someone in confidence about this, then please do feel free to use the helpline here, the staff are here to support you.
hi sparkles
how do you know that the chemo put u into menopause? Have you had tests for this? If you are now post-menopausal would it be more apprpriate for you to change to the other drug…arimidex? You also could do to discuss the bleeding with your onc. I’ve been off tamox now for over a month and not got my periods back yet - but was told it takes a lot longer for the zoladex to get out of your system.
I was told that a couple of months break would not make any huge difference to chances of recurrence…but then when you think about it at 35 with no family history, a veggie diet, 5 times a week exercise, a kid at 24 and breastfeeding…i should have had little chance of getting it in the first place! I’m kinda of the mind that whatever i do wont make a difference - its just (bad)luck!
Hi there,
one suggestion from me is, if you know anyone going to Spain to ask them to buy some Spanish generic Tamoxifen. I live in Spain and regularly fly home to see the surgeon or the onc but on one occasion I didnt have enough English Tamoxifen so bought some over the counter ones for 6euros, lo and behold no nausea, a lot less flushes and a brighter mood. Id previously prefered Wockhart and the worst for me was English generic, I felt so sick on those it was like a mild stomach bug, Id rather pay for the Spanish ones than feel like that. If Id not tried these pills I would be wanting to stop taking it too. Take care all, love Mags xx
Wow, Woody - you’ve confirmed my suspicions!! When we go to Spain/Canaries, we buy a few creams, medications that need prescription here. My h’b has been asthmatic since early childhood and here he’s regularly asked for asthma review (I guess, that’s the GP practice ticking govt boxes) Go to Spain and they say how many inhalers would you like?? I’m on T’fen: S/E - hot flushes, weight-gain, depressed, no energy, achy bones and sooooo absent-minded. Have a friend who is on a thyroid drug long-term and swears that the Spanish ones are more pure/effective and whenever she goes, she buys them over the counter. So, when we go in April I’ll see what’s available. Thanks,
Hi, thought I’d add my two penneth! Since my supply of nolvedex d dried up I have been buying it when abroad - in Spain, Tenerife and turkey, so far. It costs around 12 euros for 2 month supply. Some chemists are happy to supply, others ask for prescription. I only have six months to go, then yipee, hopefully I can put this rotten business behing me (apart from the lymphodema that is and the recon breast).