Hi all,
just wondering if anyone out there can help? I am due to start taking tamoxifen, I have read the leaflets about it and the SE, and was just wondering what the common SE are, and does everyone get them, I am 36 and am really worrying about ‘menopausal symptoms’, some say hair thinning can be a problem, but not enough to notice, well I already have really fine hair (due to a dodgy perm when I was 13!!), so this is of major concern to me, I already feel about 90 with all the BC stuff, am not quite ready to look it just yet.
Hiya I’m 36 too, just done first two months on tamoxifen. I really don’t want to tempt fate by saying this put loud, so I sm touching huge amounts of wood whilst I type, but it’s been ok. I don’t always sleep through now, get some hot flushes in the day and night, but they started during my Chemo and I don’t know if they are getting better or if im not noticing them as much , but they don’t really affect me much now. My hair came out with Chemo but is thick coming back now. Don’t seem to have put weight on and only the same level of screaming hormonsl fits at my husband and family as I have enjoyed since diagnosis in march. I was scared to death about thr tamoxifen , probably more than Chemo as I felt it could rob me of quality of life for 5 years as opposed to dealing with a few months of Chemo ill, but that’s not happened at all (yet…!)
Like you I was bothered about taking Tamoxifen after reading all about the SEs. I’ve been on tablets for 2 months now but, like Tors, am keeping fingers crossed as I say I haven’t noticed any difference.
Think got all menopausal symptoms when periods stopped after 3rd chemo ie 2 stone weight gain - AAAAgghhh! hot flushes, sleepless nights, achy joints etc.
Now I’m feeling stronger I’m starting an exercise regime to lose the weight - Can recommend the BCC exercise DVD it’s really good. Don’t think the hot flushes are as regular or severe as during chemo and I’m starting to sleep a bit better - could be down to new memory foam mattress topper I bought when started to get so achy though! Hair is growing back thicker than ever so no problem there either.
Am a bit emotional at moment but put that down to end of active treatment and feeling anxious.
There is a thread on here about different brands of Tamoxifen and their effects _ I’m taking Generics which I believe is the cheapest brand but as they seem to suit me I’m not tempting fate by swapping.
Good luck - hope all goes well for you too
Hugs xxx
Thanks vickie and lella, for your positive feedback , here’s hoping I will cope ok with the SE, I haven’t had to have any chemo, so haven’t experienced any hormonal changes as yet, don’t suppose any of you know what happens after 5 yrs, if tamoxifen supresess oestrogen, what happens when you stop taking it? I know I should’ve asked the onc, but of course I never think of these questions then!
Thanks again x
Hi Crazy Cat Lady, been taking tamoxifen since feb, haven’t needed chemo. Immediate hot flushes, night sweats and hair breaking off/ falling out. Have got very fine hair so I need all of it to look normal! Been taking HairVit capsules and they are wonderful, hair looks better than it ever did, less fallout. Needed to change shampoo as now its a bit dry. Been wearing a Trionz magnet bracelet and hot flushes/ night sweats hugely better and don’t wake me up as much. when I forget to put it back on after shower, I have a bad night. Don’t know why it works for me, but it does. Got Trionz from Wiggle.co.uk? and HairVit from Amazon. friends husband also taking hairvit and his receeding hairline is no longer reducing! They’re just vits and minerals. hope this helps, good luck
Nicky x
I’ve been on tamoxifen for almost a year now. My hair is thicker now than before and have had to have it thinned the last two times I’ve had it cut.
They do have to list all potential side effects and we have to hope we won’t get them! I find it quite hard to know what is the tamoxifen and what is the menopause (brought on by chemo).
Hi Nicky thanks for your info will look into those tabs - they sound amazing, really cant afford for my hair to fall out or thin, so fingers crossed xxxx
Elinda, your post is encouraging, it would be amazing to have to have my hair thinned, my hairdresser usually has to try and disguise my thin areas!!! - I think my mum may have mentioned her hair thickening up when she first went through the menapause, so hopefully… but if not I’ll be stocking up on HairVit.
Mmmm, think I might have used the word ‘amazing’ too many times!!
Thanks again, I start tamoxifen 1 week today, so will stock up on all hair thickening products just in case!!!
My hair is thick and crazy since chemo and tamoxifen doesnt seem to have done anything to it. I did have a bit of a shed when i started it then it just grew and grew.
Fingers crossed for you
Hi Nicky
I’ve been on Tamoxifen now for a year and like you was terrified about the potential side effects, but I honestly haven’t had any!. My hair is also alot thicker now post chemo then it was.
Good Luck
Helen
Hiya,
I’m 34 and on Tamoxifen and have had no SE’s at all. My ONC suggested taking it at night which I do, brush my teeth and then take it.
I’ve had hot flushes since my 4th chemo and they haven’t gotten any worse.
My hair is still growing through from chemo but it feels as thick as it always was. Please don’t worry.
Where other menopausal symptoms are concerned, now how shall I put this, the moisture in the soil in the lady garden seems no different to pre-chemo or Tamoxifen!
I think how you are feeling is completely normal though, I remember talking to another forum user before we both started and feeling like we might be instantly hit by awful side effects the minute we popped the first pill. I’m happy to report neither of us have noticed any SE’s and are absolutely fine.
you really made me laugh at the ‘lady garden, soil’ reference LOL,
well after being told by my onc, that he would get my prescription ready for me when I start rads, my GP rang me today, asking why I hadn’t picked up my prescription for Tamoxifen???, so looks like I’ll be starting them sooner than I thought.
Most of you seem to be coping OK with SE, so I am ‘thinking positive’ - there seems to be a lot of that lately!!! - crossing fingers and touching wood, that I’ll be fine too, and able to advice some other ‘newbies’ one day!
Hi just joined and wanted to say that I too am on Tamoxifen this is my 3rd year. Not had any side effects but last year I noticed that my hair seemed to be shedding. Over the course of a year it is now quite sparse at the front. I’m really finding this upsetting. Went to GP she recommended Perfectil Plus. I need to find out if this is okay to take with the Tamoxifen, (I hate taking tablets of any description) so worried about my hair, but more worried about endangering my risk of the breast cancer coming back.
Hi, I’m 46, been on tamoxifen since finishing chemo in mid-September and I really don’t think I have had any side effects that weren’t already there since about the 3rd chemo ( I had FEC x 6), ie the waves of hot sweat over top of my head (which now that I think of it, are not as troublesome as they were), and periods stopped completely. Am not going to comment on soil moisture, have to say the soil testing kit hasn’t been out much lately lol (another side effect of the whole shooting match, but there is a whole thread devoted to this one so will stop right there…)
Thanks for your info ladies, started my tabs on Friday, think its a bit early to notice anything different, I haven’t needed chemo, so am not sure if my se will be milder or not,
Indecisive - if you look earlier on this thread, someone suggested hair vit from Amazon, might be worth a look.
But it looks overall, everyone is different I think I just need to watch for soil moisture! LOL
Hi again!
Well I’m now half way through my second pack of tamoxifen, and the only SE I have noticed have been dry facial skin, and an uncontrollable thirst! Not sure why!, although this could just be having the central heating on full for the last 3 months, I was just wondering when did you all get the flushes?, is it a cumulative effect, or am I just fortunate, and if I haven’t had any as yet, won’t get any, anybody else got the thirst thing? Also does lack of SE mean the tamoxifen isn’t working!?! So many questions I know, I just thought I would get instant menapausal symptoms, even my periods are as regular as ever.
Any advice / answers gratefully received
Thanks x
I have been on Tamoxifen since May 2010 I did not need chemo. To start with I had some hot flushes but they went after about 3 months. My BCN said my periods would stop but they have not, they are not as heavy or as painful as they used to be.
My periods stopped in april last year im 44 during my chemo my hot flushes started then still goin on now driving me mad im also taking tamoxfen and have been for 4 months i find im very thirsty what brand are you taking mine is wockardt
Elaine - I’m on wockhardt too, well for this month at least, my first pack was generics, maybe it’s a brand thing, I’ll take note if I swap back next month, or get a totally different brand, who knows. I have an onc meeting in 4 weeks, so will mention it then, it just seems looking through the forum no one seems to mention being really thirsty, so maybe just me n you Elaine! X
Maybe but i have heard that different brands have different side effects i dont no only had wockhardt so keep me posted and let me no if the thirst goes away