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starting on tamoxifen

43 REPLIES 43
kketchup
Member

Re: starting on tamoxifen

hi....thanks for your comments and advice.....think i'll wait one more day b4 starting tamox! not sleeping very well anyway so i guess it wont make that much difference? Still waiting for the feeling of 'high' from finishing chemo, but it doesnt seem to want to come! All my muscles r aching in thighs and arms and still so tired ! just want to improve! !
Have got family coming to visit over next week so shall try to jolly myself along, b4 the next installment of treatment (radiothx starting 26th)....why do i feel so deflated? i dont need any more chemo..i shud b jumping for joy! xxxx

poppy333
Member

Re: starting on tamoxifen

i agree bonnielass, very annoying, mine have done what you said, lifted and fell, very odd. i didnt do the nailvarnish thing, so i dont think it matters what you do
i had 6 fec and no tax , worse side effect for me was with nails, fingers cracking and splitting

been on tamo a week now, sleep on the night is impossible. . and i hate the flushes i get. . hey ho, im here to tell the tail eh lol

bonnielass
Member

Re: starting on tamoxifen

Hi Kathy,

Just replying in response to the whole nail thing. I finished chemo 7 weeks ago now having 3 x FEC and 3 x Tax and now onto Radio. I am so annoyed as I looked after my nails so carefully during chemo and have just recently lost another one (have lost 3 altogether now). The last one just came off like a false nail, so weird. There also seems to be half a nail growing underneath which is strange, almost like the nail is spitting into two horizontally.

Beginning to think the whole dark nail varnish thing was a waste of time and effort. The rest of them are a bit ridged but a few are also lifting off the nail bed but hoping to hang onto them by keeping them v short.

I know in the grand scheme of things it is not very important and they will grow back but it is just another thing added to the long list of things affected. More annoying than upsetting! Tax seems to be such a harsh drug - I don't know about you but I don't think there wasn't one area of my body not affected.

And no signs of my eyelashed/eyebrows either, just a few straggly hairs that were left. Now that is a bit worrying!

xx

poppy333
Member

Re: starting on tamoxifen

kathy, my nails are a total mess, and im also unsure what to do with them, i think let the affected nail grow out and new one will appear. xxx

ive also sat and ate a big bag of grapes so i hope they dont kick start flushes lol

Geraldine
Member

Re: starting on tamoxifen

I'm nearing the end of my 5 years on tamoxifen. I was diagnosed at 47 with BC and started tam after surgery, chemo and rads. My periods stopped after chemo no 4 and are unlikely to come back but I'm not bothered. In general I'm warmer than I used to be but don't have flushes. My BC nurse and acupuncturist told me that being a vegetarian seems to have something to do with it as veggies don't seem to have the problems that a lot of other women have. The acupuncturist advised avoiding what are classed in Chinese medicine as "heating" foods- e.g. grapes, citrus fruit, choclate, biscuits, cakes, red wine, alcohol in general. Stuff with a high sugar content. The only side effect that I definitely have had and it does get me down, is the affect on my libido. Tamoxifen has more or less wiped it out and I've spoken to other women ( and one guy who had BC) who've experienced the same. This kicked in after a couple of years. In Feb next year, I stop taking tamo and will be glad if things get back to normal.

Mary_grace
Member

Re: starting on tamoxifen

Hi Kathy, not everyone gets side effects from tamoxifen. i've certainly none so far, my mum took it for years and had no problems. This site is great but the people who post most are probably the ones with most side effects x

kketchup
Member

Re: starting on tamoxifen

hi, i'm meant to start tamoxifen now but am delaying it as only just coming out of last tax side effects! i know i need to start in next few days but i dont want menopausal symptoms!!!! Tax induced hot flushes r much better now, and i hated them..........dont want any more!
Also, is anyone else having problems with their nails? Nearly all of mine r lifting off to some extent despite wearing dark nailvarnish all thru chemo. R we meant to just leave them till they come off and how long b4 they start to grow back???? Am longing for signs of eyelashes returning....kathy xx

Mary_grace
Member

Re: starting on tamoxifen

Poppy, that sounds horrible! I'm not getting hot flushes as yet and I've no idea whether that is the EPO or I wouldn't get them anyway. Sounds so uncomfortable... I know that chemopause/tamoxifen induced is more brutal than natural menopause but I wonder if they die away in the same way as they do for women who come out the other side of the menopause. Can but hope that it gets better for you x

poppy333
Member

Re: starting on tamoxifen

I used to take amitrpline years ago nwas taken off as hated taking it, , been on10mg of citalphram each day as a mussel relaxant, , for me if i get a flush i think im going to pass out which is my phobia then get an anxiety attack, so im trying to accept them and wait for it to pass,,,o hate them though, , brokensleep also, hot, cold, quilt on, off, pillows turned over arms in then out lol

CheshireCheese
Member

Re: starting on tamoxifen

Whereas my onc suggested EPO - which I tried and it didn't do a thing for me! After trying many different anti-depressants and finding the SEs of those worse than the ones I was trying to suppress, I've just about given up. Now taking 10mg of Amitriptyline at night to help me get to sleep, not sleeping brilliantly but well enough.

For a while I took 20mg Amitriptyline while I was suffering from nerve pain after surgery and it was good at dealing with that but long term it was too much, it made EVERYTHING a bit numb which wasn't good for the love life.

Mary_grace
Member

Re: starting on tamoxifen

Hi Jam, Its all so confusing. I was told Evening Primrose was OK because it has oestrogen like effects but doesn't boost oestrogen. its hard to know what to believe about some things x

jam123
Member

Re: starting on tamoxifen

Hi all, been interesting reading all your comments, i start tamoxifen on monday, i have been having hot flushes all the way thro chemo, i asked at one of my pre chemo assessments if there was anything i could take to help the flushes, i am oestrogen and progesterone+ and was told i couldnt take eve of primrose as it ups your oestrogen levels, they have put me on a low dose of citalapram which is an anti depressant, only been taking it a couple of days but i did have a good nights sleep last night so fingers crossed
Hugs jam xxx

poppy333
Member

Re: starting on tamoxifen

Hey ladies
om a week on tamo now, ,few hot flushes but was gettimg them after fec number 4..broken sleep but like most of u, its.been like that since sept dx. .

5th rad today. 15 to go, nothin to them apart from travelling. .
Enjoyong this thread as no horror se,s. nice to hear from ladirs further down the line to. xx

TSR
Member

Re: starting on tamoxifen

MG, i'm having 18! So, somewhere in the middle. I miss a couple, due go bank holidays. Ggggrrr, those pesky royal weddings.....So they stretch into May. I am not enjoying them, but I have to remind myself that I am really lucky, not having to travel too far etc And it is the Easter hols, which is a bit tricky for childcare, but hey ho!
Tracey
X

Mary_grace
Member

Re: starting on tamoxifen

Hi Tracey, I wouldn't say I had any SEs at all, not even any hot flushes. Not started rads yet (yawn not until 27th) so you'll be all but finished by the time I start. I'm supposed to have 20, 15 general and 5 boost. Are you having the same or less? Apparently this onc says 20 and the last one used to do 15 for the same thing xx

TSR
Member

Re: starting on tamoxifen

I had my (2nd) mirena removed just before diagnosis. I would not have another one now, despite it being fantastic for regulating and lightening my periods. I am hormone positive, as well as her + and it is just not worth the risk for me.
Still no real side-effects from Tamoxifen, apart from poor sleep, which I was having anyway. Some warm flushes still, but that is not helped by having rads at mo, and my skin up my neck being a bit hot.

Mary_grace
Member

Re: starting on tamoxifen

I wondered about a possible Mirena link too but maybe it is just that there are a lot of hormone positive bcs out there x

Arnol007
Member

Re: starting on tamoxifen

Hi Kazoo

In answer to your question re mirena, i was advised to have mine removed.There is a thread on Mirenas and most seem to have been told to have them out. Is there a link between mirenas and BC a lot of us seem to have had one in when diagnosed with BC?. Or is it just BC is very common?

beardie
Member

Re: starting on tamoxifen

Hi
I have been on tamoxifen for 7 weeks and have had hardly any side effects only slightly achy legs at night and disturbed sleep but that could be due to stress as about to start chemo this friday.
I did mention it to my BCN as I was worried that it wasn't working but she said I was lucky that I wasn't having alot of problems. I have stopped taking it now because of the chemo and feel like I have lost my protection even if it is only for a week.
Melx

Mary_grace
Member

Re: starting on tamoxifen

Hi All,

Day 13 still no SEs, no hot flushes or anything. Still taking my evening primrose too so not sure whether this helps but if its working for me I think I'll keep on taking them xx

TSR
Member

Re: starting on tamoxifen

Hi Sue. Good luck, here's too no SE's.

Day 12 for me! Still no real SE's. Flushes of 'warmth,' but not real sweats - not since chemo. Think I will start some Eve Primrose.

Tracey
X

AvenueSue_
Member

Re: starting on tamoxifen

I just popped my first tamoxifen. I have been having chemenopause symptoms since my first tax back in January and wonder what will happen next in terms of frequency of hot flushes, dryness and night sweats. Still it is good to read that SEs are not a given.

kazoo
Member

Re: starting on tamoxifen

Hi
I was started on Tamoxifen in Feb (diagnosed end Jan) and also put on Zoladex inplant. I haven't had surgery yet, they trying to reduce tumour size before that (it's a biggie!) i'm in Ireland so may do things differently here, everyone I read about seems to have immediate surgery and/or chemo and drugs after. Mine is totally hormone-fed like Lolly73 so no chemo for me, for which i'm grateful. No major side-effects yet, few achy bones and headaches, and Zoladex has caused a few dizzy spells (at least I think it's that causing them). I get the odd 'hot flush' but nothing major. I still have my mirena in, doc said it was okay to keep it in. Mary Grace, did your doc tell you to take it out?

Mary_grace
Member

Re: starting on tamoxifen

PS: No problems with night sweats, sleeping or anything as yet...

Mary_grace
Member

Re: starting on tamoxifen

Hi All,

I am taking 20mg daily. Have taken if for just over a week, no symptoms as yet. I wonder if some of the menopausal symptoms come from after effects of chemo? I didn't have chemo, still have periods (mirena coil had to go, had to replace with ordinary one as you can still get pregnant even if no periods and they told me absolutely not to get pregnant whilst taking it because foetus would have "abnormalities" whatever that means) I'm pretty darn ancient so maybe wouldn't anyway, but don't want to take chance...

I also started taking Evening Primrose at same time as tamoxifen. Can't say I've noticed any difference there either. Onc and BCN said some people don't get SEs, we just hear more about people who do. Got to say my mother and mother-in-law both took tamoxifen for years and neither mentioned any SEs x

triphazard99
Member

Re: starting on tamoxifen

This has been encouraging reading for me, too, as I start the dreaded tamoxifen at the beginning of May, same day as I start rads. I haven't slept well since dx anyhow, and the chemo has brought on night flushes (fortunately not niagra sweats, to date anyhow), so hoping that the tamoxifen doesn't do much worse.

Periods stopped after fourth chemo (1st TAX), so am hoping that tamoxifen will keep them at bay as I was highly 8/8 er+, and would feel much more convinced that the oestregen was at bay with no periods. My onc. is open to discussion re zoladex etc if they were to come back, tho, which is reassuring.

Of course this forum is the perfect place to rant/complain and worry out loud about side effects and negative things - I've used it for exactly that purpose, and it has been a godsend - but a thread with positive things - or indeed 'non-things' such as trivial or non-existent s.e's is such a relief to discover, too!!!

Sophie xx

flossiedog
Member

Re: starting on tamoxifen

Hi everyone

Thanks for the posts and the positive messages.
I'm a fairly positive person anyway, even now believe it or not, but I think I just needed a bit of reassurance. Back to hospital on Tuesday, so I guess that will be the start of it.
I'm kind of hoping to delay it for a while as I have a coil in beacause of heavy periods, so that will have to come out. We have a holiday booked for June and I really want to be able to enjoy that without worrying about periods for a while.

Thanks again everyone, hope the sun is making us all feel a bit better.

xxx

Gwendolin
Member

Re: starting on tamoxifen

I have been on Tamoxifen for nearly four years now with no side effects. This was a real blessing to me as following mastectomy and reconstruction following DCIS in May 2007 I was commenced on Arimidex which caused me all sorts of problems; nausea, vomiting and weight loss due to loss of appetite. It was reading other folks experiences of this drug on the Breast Cancer Care forum that encouraged me to go back to the oncologist and voice my worries.

I know I was lucky when my breast cancer was diagnosed in that there was no lymph node involvement and I did not require chemotherapy. This was offered but the benefit was 1.5% increase in life expectancy after five years so I said no as I wanted my life back like so many of you. I wanted to be in control and although being on Tamoxifen for 5 years may feel like a life sentence at the time, it isn’t honest. Being 62 now and therefore had been through the menopause before the cancer was diagnosed I appreciate that my situation is very different from those of you who are much younger than me. I found initially that my breast care nurse specialist was always there to listen and advise on all aspects of my treatment. I still keep in touch when I feel the need. Please remember she is always there for you.

Wendy

alise
Member

Re: starting on tamoxifen

Hi

I have been on Tamoxifen for 5 years in June. Apart from bleeding issues I have been fine. It thickens the lining of your womb and approx 20% of women have bleeds on it. I am regularly checked though by gynae and that is all it is.

I am DREADING coming of it as I have to decide whether to have an AI for another 3 years or nothing. My recurrence risk is low anyway and I Cant bear to think of going on an AI as I already have osteopaenia.!

Good luck!

Love to all
ALise x

TSR
Member

Re: starting on tamoxifen

Hi, I started at about the same time as MG I think. I haven't noticed any side effects yet, but it is early days I suppose. I am finding sleep difficult, but have done since diagnosis, for one reason or another! I am not taking Evening Primrose oil yet, as it has made me feel sick in the past, and so can Tamoxifen, so I thought I would wait a month, so that I could tell if it was that or not.
What dosage are you taking MG?
Good luck everyone, and it is lovely to hear that a lot of women have not suffered at all with it,
Tracey

S01
Member

Re: starting on tamoxifen

Hi ! just finished my first month of tamoxifen...have been waking two or three times every night...just too hot...then too cold ! but apart from that its been okay...I was dreading it but as every one tells me it will get better am beginning to feel more confident about the next five years ! start radiotherapy next month so my mind is more focused on that ...one step at a time !!!

Mary_grace
Member

Re: starting on tamoxifen

Hi, I started taking tamoxifen at the beginning of the week. Have read about all kinds of SEs and obviously its early days but so far it doesn't seem to be doing anything obvious to me. I am taking Evening Primrose in the hope that it may minimise SEs as I'm premenopausal but so far so good...x

potmaid
Member

Re: starting on tamoxifen

Hi ya,
I was on Tamoxifen for the full five years, kept my periods but they became more regular and predicable. I had no real side effects apart from I found it very difficult to lose weight ( my lack of willpower may have contributed to that, of course)
The thing I noticed the most though, but not till I had finished was that my skin became brighter and in better condition, really noticable. Like its often said every one is different and it effects everyone in different ways.
Hope this helps you not to worry too much, 5 years seems like a life sentence but it soon goes, all too fast 🐵
Clare x

crazy_cat_lady
Member

Re: starting on tamoxifen

Hi, I've been on tamoxifen since end if Nov, I'm a non chemo girlie, 36 - so pre meno, my periods are as regular as ever, one or two flushes at night, my main SE is I'm always really thirsty, but if that's the worst then I can't really complain, I think most of us are concerned about tamoxifen, as it has to be taken for sooooo long! And the list of SE REALLY scary!

Good luck, hope any SE are mild ones 🙂

lolly73
Member

Re: starting on tamoxifen

Hi Wendy

I also had laser treatment for abnormal smear when i was 22, im 37 now. Dont think this has anything to do with ovaries. My ovaries were removed instead of having zoladex as 100% hormone fed breast cancer.

polar_bear
Member

Re: starting on tamoxifen

Logged on this morning and found that you had asked the very question I wanted to ask! I had a mastectomy following DCIS last July and had appointment yesterday as follow-up nine months after reconstruction and for the first time Tamoxifen was raised as a recommendation that I take it for 5 years to help prevent developing cancer in my healthy breast. This is the first time it has been mentioned - just when I thought I had come to the end of treatment and could get back to 'normal' life! So am now very keen to get feedback - positive and negative - from anyone. I know nothing about Tamoxifen at the moment and so need to do research before my appointment with the oncologist so that I can decide what to do. Thank you in advance to anyone who can help! Happy Mothers' Day weekend to all you mothers out there!

sandra44
Member

Re: starting on tamoxifen

I have been on tamoxifen for two years now,I take it at night with evening primrose oil and I have no side effects whatsoever ! Am pre menopausal and have regular periods since had to have my coil taken out. However, it is a double edged sword as it does make you wonder if no side effects means it isn't actually working ! But my onc says that isn't the case for premenopausal women and some women do sail through natural menopause with very little side effects so I am just hoping that I'm one of those that can cope with depleting oestrogen supplies. Good luck.

lostinfrance
Member

Re: starting on tamoxifen

Well I have been on tamoxifen since end of Feb and its not too bad, I get mild flushes but keeping active means I really don't notice. Alchohol makes it more obvious to me. I am taking shed loads of evening primrose oil and that helps on lots of fronts and is allowed.
I am also, at my own choice using progesterone cream but I'm pr-

My periods were regular as clockwork until changing from fec to tax and after tax no 1 they went and havent reappeared so I guess thats it! The flushes only started when i started the tamoxifen.

The other se that I find more irritating is i have disturbed sleep....I wake 3-4 times a night but am not sure if its coz I'm hot then cold then hot or just i wake up 😕

flossiedog
Member

Re: starting on tamoxifen

I know what you mean, it's the fear of the unknown as much a sanything else.

xxx

poppy333
Member

Re: starting on tamoxifen

im due to start next week, and like you very concerned . . i dtn want hot flushes and early meno, i want to feel normal.
x

tors
Member

Re: starting on tamoxifen

Hiya, i was really scared about tamoxifen too before i started it in september. I found it harder than preparing chemo in some ways as chemo was for a few months whereas tamox was for five years and felt like it would potentially stop me reclaiming my life and myself. My periods stopped with chemo and havent cone back (i am 37) so i dont need zoledex at present. My hot flushes started with chemo and are probably a bit better now, but they werent tertible to start with and now are quite mild, though kick in after i drink alcohol! But to date i seem to be tolerating tamox well and it hasnt affected me getting my life back on track. Good luck! All the best

vickie

flossiedog
Member

Re: starting on tamoxifen

Hi lolly

Thanks for that,I really appreciate it. Concerned as well as I had tretment for abnormal smear a few years ago, so wonder if that makes me more at risk of the ovarian cancer se.Anyway, have an appointment with gp on Monday so can have a good chat with her.
Thanks again
Wendy xxx

lolly73
Member

Re: starting on tamoxifen

I started on tamox and zoladex together 3 years ago (now just on tamox as had ovaries removed 2 years ago) and have just a few mild flushes each day. Its not bad for all of us! Good luck x

flossiedog
Member

starting on tamoxifen

Really sorry if I'm putting this post in the wrong place, I have read many posts on this subject, but they all seem to be from ladies suffering some of the horrible side effects.
What I would really like to know, is there anyone out there taking this medication who is not suffering or has not suffered any side effects?

love to all
Wendy xxx