stopped taking Tamoxifen

Hi Girls
haven’t been on the site for a while trying to get back to normality, i.e. not thinking cancer 24x7,
I had WLE for invasive Ductal in April with six nodes removed, which were clear, had RADS no real problems, but then came the dreaded Tamoxifen, since June, I have put on 3 1/2 stone, skin is like fish scales, and then comes the night sweats and the flushes, aching joints, mood swings, in other words if there is a side affect I have got it, have tried all meds ONC could throw at me, but decided last week, enough was enough, asked ONC to give me percentages, on BC not coming back, if I stay on Tamoxifen for five years as he suggested, he came back with 3%, he feels that I am very unlucky in getting all the side effects known to man, and has agreed that I can stop taking it, I came out of his office with a big smile on my face, but also feeling very scared, well its now just over a week since I took my last Tamoxifen, (I know this is early days,) and am still getting the side affects, but feel that quality of life needs to be worth while, and it was not, so will now have to live with my decision, ONC is going to keep a close eye on me, which is great.
will let you know how I get on
Heatherellis

Heather

its your decision and its your right to take this decision…at end of day we are in control.

But I just want to throw an idea at you - I had tons of aches after finishing treatment and I discussed in detail with my onc- really think they were because of rads. So I guess what I am trying to say - you get rid of the tamoxifen you may not get rid of how you feel! The drug leaves your system within 2-3 weeks (I think but you can check this- its not months), so maybe just keep in mind to look at this again.

best wishes
Cathy

I stopped taking Tamoxifen after 12 months, like you I wasnt getting a huge benefit from it and I felt really miserable. I coped with the diagnoses and surgery, lucky for me didn’t have to have chemo and had rads 20 years previous so couldn’t have them again. It was when I started tamoxifen my problems started, my GP tried to tell me that she was surprised as no one usually gets side effects, she should read this forum. I was switched to Arimidex but after a few months I felt about 100 and thought I was starting to look it, so they went the same way.

That was almost 12 months ago now, it did take a while to get them out of my system, but I felt fine after that and am happy with my decision, it was made with my consultants agreement.

We are all different and I am sure there are many who get little or no side effects, I just was’nt one of them.

Best wishes

Jan

Hi Heather, i had 50 days of Tamoxifen and it was pure hell, i then had 3 months of zoladex which is even worse hell, at least now i am going for a total hysterectomy with ovary and fallopian tube removal on the 18th of december, so two weeks after the 6th of dec i am hormone free!!! i will then be put on an aromataise inhibitor, (arimidex i think) but the gyni has assaurred me that i won’t have all the effects anymore, so i can’t wait, had i not had the choice of having a hysterectomy then i would certainly have done the same as you, i think quality is better than quantity any day. plus i get out of cooking xmas dinner (such a plus i think) and the hubby might even get a bit of the other, who knows??? lol

all the best to you

lots of love

Alisonxxxxxxx

Good luck Heather.

I get really annoyed when male consultants and doctors sit there denying that Tamoxifen has side effects. I had to beg for Nolvadex for a year. I sat in front of the consultant with the bc nurse telling him that some ladies were better on Nolvadex and he point blank refused to prescribe it. He told me that I musn’t forget that I have a life threatening disease…as if I could. A month later I wrote all over my repeat scrip request “please prescribe Nolvadex. Having awful side effects” and I got it!!! This is after a year of begging. Needless to say I haven’t told anyone in the bc team as I am frightened they make me go back on generic. I know how you feel Heather. I haven’t put on weight but am 3 1/2 stone overweight anyway and can’t lose it and now have a big roll around my middle which wasn’t there before. My internal thermometer has gone crazy. I can be freezing cold and shivering badly but boiling up in side. I constantly feel ill. As though I am coming down with flu. I try distraction techniques to take my mind off it all but can’t wait for 4 years time when I can stop…if I last that long. Wish I had your courage, Heather. Wishing you all the best

Debbie
xxx

oh Debbie, what an awful experience you’ve had, i really really feel for you, my onc was a bit of a pratt, but thank god the gyni who he referred me to is so aware of the side effects of the likes of tamoxifen and zoladex, he even told me that if he ever had to put women on zoladex for gyni reasons that he always made sure they had hrt to help combat the awful side effects, then said that i was the 5th woman this year who has had unbearable side effects from both tamoxifen and zoladex that he has seen and offered total hysterectomy’s to, i just consider myself so lucky to be in his care, he will certainly be on my xmas list this year, i know how you feel about being so cold and so hot inside, i am like that constantly, i’ve not had more than 3 hours interrupted sleep since starting on hormone treatment, and my knees and hip and shoulder and elbow are all feeling about 90 years old, and i am only 45. what a shame they don’t tell us any of this when they put us on the hormone treatment!

lots of love

Alisonxxx

Just caught up with this thread. Wow Heather your brave.

This am when i got up to the loo hubby said your hobbling round like an old person, ‘its tamoxifen side affects’ i said i have stiff ankles and joint pain. Ofcourse i am over weight too. I have put on 2 and half stone with tamoxifen…when i suggested to onc i had ovaries removed and then arimidex she said ‘oh that causes more joint probs’

I honestly felt ‘sad’ and completely ‘caught up’ in this dreaded disease, treatment and side affects of it all.

However i am still here and will continue to take me tablet. I have 2 friends 7 and 9 yrs since Dx and both took tamoxifen.

Its an individual choice as is chemo surgery etc.

I have always said if it was in my vital organs i would refuse treatment but if i am God forbid faced with it i may think differently.

Take CAre
Rx

Hi Debbie,

I don’t know if it was you who prescribed Nolvadex in a previous thread, but who ever did, did me a massive favour. I changed after I burst out crying at my surgery and to be honest, my GP was practically in tears and 4 months into Nolvadex and I feel a lot, lot better. I’m still tired, but that could be just that I’m out of condition and …age…54.

I guess I’m going to try and stick it out for the full 5 years, I’ve been going since June of this year, so, roll on 2012.

Everyone is different though and I really think if I hadn’t changed onto Nolvadex I would have certainly felt like packing it in.

Linda x

Hi Girls
thanks for your response to my message, I am now really worried, I have just had the news that my cousin has also been diagnosed with BC and only has a 30% survival chance, that makes three of us, myself my sister and now my cousin, from the same generation, up until now the Genetics Councillor thought that there was only a moderate chance, that my daughter and neices would get BC I am now waiting to hear what she rates the chances at now, I still think I did the right thing coming of the Tamoxifen how I feel in a few weeks time I don’t know
Heatherellis

Stay positive Heather…if poss. Did they suggest you take a break then try it again? My consultant pooh poohed Nolvadex, patronisingly told me I was living with a life threatening illness, then suggested I come off Tamoxifen for a month. The bc nurse’s jaw nearly hit the floor and I said that I thought that would be defeating the object of it. Also, as it can take months to build up in your body, I would be right back at square one. I find the whole experience really ironic also as I am dead against hormone pills in any shape or form and have never even taken the contraceptive pill. After years of this, I am now stuck with bloody tamoxifen whether I like it or not. Of course I do feel v sorry for those whose tumours are negative too as they don’t have the benefit of it and have no choice. To be honest, I can’t see me taking it for 5 years. And I have just discovered that a work colleague of my husband, who had masectomy and the works including a reconstruction, has just found a new lump in her other breast and she was on tamoxifen for 2 years.

Linda

It might have been me banging on about Tamoxifen. I don’t know but thanks for your comments. I do feel much more positive now. Have just taken second Nolvadex pill and have noticed that I am no longer burping for about an hour after like I did on generic brands. Generic brands are fine if you can gurantee to get the one which suits you but in my area you can’t. I asked at all the chemists and they said they had no choice. They just got what available. It’s a nuisance that I have to order my nolvadex first but a small price to pay. I am just grateful that I can’t put in a repeat scrip request at my doctors without having to speak to anyone. I just shove it in the special box and go. Two days later I collect it.

Anyway off to do some knitting based on the theory that I don’t think of much when I am casting on and counting…lol

Love to all
Debbie
xxx

hi Debbie, you sound just like me, i won’t even go and see my gps anymore, they just make me feel as if i am a fraud!!!

lots of love

Alisonxxxx

Me too Alison. I have had earache, headache and jaw pain for about 6 weeks. Dentist looked quite shocked when she heard length of time I have suffered in silence. I had dentist app booked anyway for check up and thought I would get more sense from her. Her friend was having rads at same time as me for bc at a different hospital and the dentist takes me seriously and understands more probably because of this. She thinks it is something called TMJ but has reffered me to hosp as i have had bc to be doubly sure it’s not related. My doctor would have sent me off with another scrip for Diclofenac. I have visited the docs poss 4 times in the past year since dx ( and this has only been for scrip renewals) and have commented each time how tired I am and how I have blurred vision. None investigated this. One sent me for fasting blood tests after I asked if it could be diabetes. It wasn’t but no one told me the results and no one did any further investigation as to the cause of my extreme tiredness. By accident, I have discovered it is the anti depressants I was taking. For a year I have been sleeping every afternoon, most evening and all night. GGGrrrrr Stopped the pills and weep quite a bit but at least I am still awake and I can see properly…lol

Love
Debbie
xxx

Can’t believe how many doctors have differing views. I sailed through the two years of Zoladex/Tamoxifen combination with only a few irritating problems, but goodness me the side effects of the Tamoxifen after I had stopped the Zoladex, never have I felt so ill in all my life. Saw Onc who said it was NOT the tamoxifen so referred me to the gynae. She said straightaway it IS the tamoxifen and also my ovaries were starting to work again because of stopping the monthly injections. She put me down for urgent ovary removal and advised my Onc to put me on Arimidex which he did. Did have a few joint pains for the first few months, now take daily cod liver oil capsules and a morning and night tablet of Osteocare calcium/magnegisum/zinc/vit. D (from Boots, normally 3 for the price of 2). Feel fine. We all react differently to medications but at the end of the day we must do what we feel is right for us, we know deep down - call it women’s intuition if you will - how we truly feel and what we need to do. There is no right or wrong for the decisions we make.

Love K