Tamoxifin Buddies wanted!!!

[Guest user]

Hi Sally, sorry to hear you are feeling rough, that was very useful info from Gocat - I reckon you will feel better now you have stopped the EP oil - we are all different but I am sure you will even out once it is in your system more, take care, debbie x

[gocat]

Hi I stopped taking EPO as I read on here it helps you produce Oestrogen . Here is an old thread on it that I got from google http://www.breastcancercare.org.uk/forum/i/is-evening-primrose-oil-oestrogenic--t4829.html Seems lots of alternative medicines arent suitable for us if we want to avoid oestrogen.

[Guest user]

Hi All

Ive been taking evening primrose oil since mon and the tam i started on tue evening, i felt really quiet sick on monday and on and off ever since,now I think its too soon to blame the tamoxifin so googled the oil and found out its a rare side effect of it. so ive decided to stop taking it and see what happens.

Just wondering if anyone else has had this problem.

take care all and hope you have a lovely weekend

Sally x

[Guest user]

Hi Pauline, used to speak on the chemo thread - glad you are all done with that one! I have been on tamoxifen for 2 months now and have not had any significant SE's - get a bit flushed a couple of times during the day but I can live with that! Hope you find it just as good and all the best for the rads - they didnt give me that cos of the secondaries to the bones so I will find out whats next in store for me in early november when I see the onc again. Best wishes, debbie x

[hollymeg]

Thanks sally, already brought mine from D&H they too have them on offer buy on get one half price. You were soon done after your chemo and rads, like julie i am still waiting to start rads. Hopefully we will all be done for xmas.

Have a good weekend, luv Pauline x

[chipper]

you might not get ANY SEs !! I'm approaching this (1 month in) with the attitude that I'm not going to get any,or at least I'm not going to notice any - so far so good. Lots of people are fine and dandy on tamoxifen and sadly we don't often hear from them,only from folk who do have side effects. Am not doubting people when they say they do have horrid side effects,but I do think that it's wise to try not to expect any 🙂

[Guest user]

Hi All

hope you dont mind me joining this thread ive just started to take tamoxifen 3rd pill tonight. Can anyone tell me when the SE kick in as ive had a couple of hot flushes during the day and now got thrush.Ive had night flushes since starting Taxotere chemo back in August so im used to them LOL.

Hope I dont get too many SE as im getting pretty fed up having to deal with SE LOL

Take care all

Sally x

Oh Pauline ref primrose oil my onc said 1g (1000mg) daily and they are on special offer at mo in superdrug BOGOF so its 6mths worth for £8

[hollymeg]

Thanks for that lolly73, will remember that for when i start mine. Been and had my rads planning today and start on 9th of Nov, will make the most of the free days before then
Luv Pauline x

[lolly73]

Hi Pauline

Just wanted to let you know that my onc recommended I take a low dose asprin to help prevent blood clots from tamoxifen, and also he said its an anti cancer drug.
Im 36 with no other medical conditions, and usually low dose asprin is used after stroke or heart attack, and of course must not be used if you have any stomach problems.

[Guest user]

Thanks, Water, for your post on 12 October.

I am a great fan of water anyway and probably drink 2-3 litres a day, but for the past week I have done as you do - 1 litre of filtered water before anything else.

I have noticed a HUGE difference in my aches and pains! So thank you.

Bubs X

p.s. the reason why water is never mentioned in the medical world is because you can't patent it and sell it!

[hollymeg]

hi jenhar, i am having 25 rads to chest and lymph nodes. got planning in morning.

Can i ask how much evening primrose oil do you take and i havnt heard of taking asprin too, can anyon tell me what that is for?

Thanks luv Pauline xxx

[Jellylegs]

Hi Jenhar everyone, I've been taking my Tamox with Evening primrose Oil and low dose asprin,still waiting to see if it helps!!
Just had No 2 of rads and already need Piraton to stop itching boob of fire!!! I've got Bio Oil and Aquaus cream to help. But see September/October Cooking thread Jenhar. Ness (((((hugs))))) to all xxx

[Daisy_do]

My ankles are really stiff first thing and after I walk - to the shops - and they are painful too. I went to collect a parcel from PO but they had a strike on so I waited in the queue but by the time I got to the counter I could hardly walk - they couldnt find my parcel and so told them to keep the thing. I then had to hobble home.

Anyone found relief from this yet?

Dx

[Guest user]

Hi Jellylegs,
I'm so happy to find out I'm not the only one who hobbles around in the morning.I cant bend my ankles and my feet really hurt it takes around 5 mins hobbling around to loosen up! I also have found that I have very numb fingers during the night???
Have you spoken to anyone about it? I'm going to mention it on my next visit!
Hope your ok

Jenhar
xx

[Guest user]

Hi Pauline,
I was put on Tamoxifin straight after surgery,I think it all depends on each individual!!
But be thankful I have lots of SE and will have to cope with Rads for 5 weeks as well....oh! Joy!
Good luck with your Rads, keep us posted on how you get on and perhaps we can swap tips on how to get through it pianlessly!!! how many weeks do you have?
Jenhar
xx

[hollymeg]

hi there just thought i would join in. i start my rads in a week or so, isn't it funny how different health authorities work, i was told i cant start tamoxifen till after i have finnished rads.
Reading all your posts with interest

Luv Pauline x

[Guest user]

Hello I've been on tamoxifen for 3 years. Night sweats and lack of sleep were extreme to start. In the past six months the side effects have settled down. I've gained weight in weird places where I never had fat before but when I stick to low-fat diet my weight does go down.

I'm not sure if this is true for everyone (probably not) but I have noticed a distinct correlation between drinking alcohol and having hot flushes and sweats. My drinking is minimal and sporadic but when I don't drink at all, I don't get the sweats.

So, although being more strict with my food and drink is not fun, I feel better for it.

Has anyone else noticed anything similar? Maybe it's all in my mind...

[Jellylegs]

Hi everyone,
Sorry I've not been on for a while. I feel OK on Tamoxifin at the moment although I have put 10 lbs on !!! I think this has more to do with me being off work and not being so active than the Tablets though. I'll have to hit the gym soon I think. I have been having 'Power surges' at night and have invested in a 'Chillow' it is now my best friend I love it. The only really annoying thing I've noticed is I hobble to the bathroom first thing in a morning now.
I started my RADS today onto next phase (((((hugs)))))) to everyone xx

[Guest user]

Thank you chipper and Anna for your advice ...i have the pr and keep looking at it thunking that i have to be brave and start just not sure having tamoxifen and rads together....had my last chemo 30.09 and i am happy at the mo as i am FREE of anything soon that will be over..but anyway i have to try and see how is going to afect me....thanx girls...Christina

[annalou24]

Hi Christina,

I think it just varies a lot from one person to another. So far I have had APS and Wockhardt brands and have not really noticed any difference. But for some, the differences are quite noticeable. A lot of people seem to prefer Nolvadex brand, but I think it is in the process of being discontinued.

I was really scared about starting the Tamoxifen too, but have not found it too bad at all. If you start it and it is awful, you can always stop and discuss other options with your doctors.

Good luck !

Anna xx

[chipper]

krisid - it'd be impossible to tell you which brand of tamoxifen is best for not getting SEs as it seems that everyone reacts differently (or indeed have no adverse reactions) to the brands- it seems to be a very individual thing.I think you just have to get started and see what happens ! I was very anxious about starting a month ago, but so far so good -this is Wockhardt brand and is what I was given in the first place - I didn't ask for that brand in particular-luck of the draw !

[Guest user]

Hello ladies i have prescr for amoxifen been told to start anytime i want to.I am a bit confused by all this BRANDS working different way with SE so if you are kin to advice me wich is THE BEST...if i can say that..i am scared start having it ....Christina

[contrarymary]

I'm 2 weeks in now. I get hot flushes on the soles of my feet! Bizarre, I know.

I'm also experiencing a low level cramping period-pain sort of ache all the time. To start with thought it was because I started taking the tablets the day my period started, but that's now long gone and I'm still getting those feelings.

I've been feeling very thirsty all the time, so that water cure thing sounds right down my street.

Another thing I've noticed - I'm going to the loo lots more on tamoxifien - both for #1 and #2. Am I unique in that?

It's incredible with this disease - you lose all inhibitions about stripping off, and about talking about the practical issues you experience with dealing with treatment.

Occasionally get that really stiff feeling in my feet, but I'm just walking it off. Early days, but so far I've lost weight on this treatment.

Jenhar - good luck with starting your rads next week!

[Guest user]

That sounds good the water cure, will check it out. I have also started taking EPO with my Tamoxifen but I take mine in the morning as I have a very bad sleep pattern. Finding the day Hot flushes are reducing after just 1 week.So I may take EPO both morning an eve!!(don't think it will hurt!!)
I start my Rads next week 5 wks everyday.....

[Guest user]

Just to let you know I found that by taking Evening Primrose Oil together with the tamoxifen before going to sleep, the side effects were greatly reduced.
Then I found by doing a simple Water Cure of drinking 1 litre of filtered water 1st thing every morning as soon as you wake up, then resting for 5-10mins.
This has reduced the side effects by at least 50% and energizes and rehydrates the body and flushes away all the toxins. You will obviously have to pee quite a bit in the morning.

Check out Water Cure website for more info

[chipper]

hi ariel !

[Guest user]

Hello everyone,my first post feel a bit nervous!I wanted to say to Shenay;you might find that your side effects on tamoxifen get better in time.I have been on it since March 09 and at first had severe leg and joint pains but now (Oct)that has gone and I only have slight numbness in my feet 1st thing in morning.Still have the hot flushes on and off but they are bearable and seem to be better if I dont drink alchohol(unfortunately).
I expect you have started your radiotherapy now and hopefully you arent finding it as bad as you thought.I luckily had no side effects at all or redness etc.
I am not surprised you are feeling down after everything you have been through.It is a very traumatic experience,but hold on as its all woth it when you are well.Are you having any counselling?You can have it on the NHS in my area.
I am on lithium as I have had severe depression pre breast cancer and I am sure that's what has kept me sane!Take care.

[chipper]

hi Teecee from me too...I'm at same point in tamoxifen taking as Anna,1 month in and had my first period last week since starting -it was 2 days late and not very heavy and finished very quickly - am pleased on one hand but fearful of going the other way too !

[annalou24]

Hi Teecee
Welcome to the website! Hope you find it useful and supportive ( I do!)
As you may gather from previous posts, I am one month in to Tamoxifen treatment and my period arrived as normal ( well a bit later and heavier than normal actually, but has now ended after 4 days).
I think other people have found the same thing.
I have not had chemo, so cannot compare notes on that, but my friend who is three years post dx, says her periods stopped during chemo but have come back as normal now that she is on Tamoxifen.
It does seem weird to me as well. I was hoping that Tamox would mean no more periods but I can't say I really understand how it works or what it actually does!
Hope to hear from you again

Anna x

[Guest user]

Hello all. I am new to the website but have found lots in common with many. I have been on Tamoxifen-don't know which brand- I'll check later- for about 6 weeks now; FEC chemo and 20 radiotherapy sessions done. I am experiencing night sweats every 2 hours regular but they are generally just mildly annoying- I fan myself for 5 minutes then go back to sleep. But these past 3 days I have noticed my body exhibiting the symptoms of wanting to have a period, and I am confused! My periods stopped after cycle 3- fine by me- and I assumed from what little literature I read that the Tamoxifen would probably mean no more periods. Nothing yet but I feel bloated and tender and have been sweating during the day as well- very attractive not. After my chemo, I started- with my oncologist's approval- back on supplements of Vitamin B complex, starflower oil and ginseng/ginko and zinc. I have also been applying progesterone cream. And walking daily for an hour whenever I can, or back to the gym. Period no period, sweat no sweat. Any help would be welcome.

[chipper]

hope I'm not speaking too soon !!

[annalou24]

Ha lucky you chipper! Mine arrived yesterday, 2 days late, and is the heaviest one I've ever had... Hope it ends soon.

[Silvasava]

Thanks for your comment Chipper - much appreciated
Sometimes its difficult to know what is usual & paranoia!!! I must admit reading the comments has certainly made me feel more confident.

Thanks again
Lindy Lou

[chipper]

forgot to say - this period seems to be short and light, if anyone's interested 😉

[chipper]

hi Lindy Lou
Am glad you aren't having any side effects -that's encouraging news ! I think the hardness is very common from what I gather and is probably scar tissue/rads damage - mine is like this. You can always ask your bcn and certainly ask your onc. Am sure you will be seen regularly and aren't being dismissed after this visit - I believe oncs and surgeons alternate seeing you afterwards- I guess the frequency differs from hospital to hospital.
chipper

[Silvasava]

Hi All

Only just discovered this website - so relieved that there is somewhere so supportive to discuss problems/issues/fears etc. I had a lumpectomy end June & started Tamoxifen middle of July before 15 sessions of Rad that finished at the end of August. I dont seem to have had any side effects from Tamoxifen so far (I've been taking Starflower for years to lessen the night flushes- I'm 63) I see my ONC on Monday - for the 'wash up' session I suppose, before I go back into the 'system' My only concern at the moment is that my breast is still quite tender and has quite a large area of 'hardness' I dont know if its the operation or the radiotherapy. Has anyone else had similar symptoms?

Lindy Lou

[chipper]

hmm, it is confusing..I imagine the tamox. as an infertility thing would encourage egg production ? I have A level biology but can't remember the reproductive cycle bits and hormone things..tsk. I've even illustrated a book about menstruation so you'd think I'd remember something !! Might ask bcn

[contrarymary]

If tamoxifen is also an infertility treatment (which it is for some types of infertility), I wouldn't necessarily expect it to stop the periods. Does make it a bit confusing to understand exactly how it works though, then, doesn't it?

Only thing specifically I've noticed so far is that the soles of my feet feel like they're on fire the whole time. I'm sitting in an airconditioned office, in sandals with ultra-toasty feet! Not at all what I was expecting.

My GP said it could be 6-8 weeks before I'd feel the full effect of any SEs. Does that chime with anyone else's experience?

[chipper]

am trying not to think of things like flooding !!

[annalou24]

Thanks chipper, I won't feel so paraniod if mine does now arrive.

I am sure my onc said I shouldn't have periods whilst on Tamox...but maybe I am imagining things...
My friend who has been on it for 3 years still has periods, although they stopped while she had chemo. She is a few years younger than me.

What I am dreading is worse/heavier periods or flooding ,pain etc.

Anna x

[chipper]

oh goodness,was going to write something v similar - am pre menopausal and a few yrs older than you but with usually regular periods. This is my third week of tamox. and I also started it during my period. My next one just started today (about 2 days late)..no particular signs of it coming beforehand -no tenderness etc.

[annalou24]

Hi everyone

Just wondered what people's experiences were re. periods whilst on Tamox ?

I am premenopausal (43) and have not had chemo.I have been on Tamoxifen for just under a month and was having a period when I started it.My next period is due today but no sign of it yet.( usually have a 25 day cycle) I have a million spots and feel weepy.Should I expect it not to appear? Appear with a vengeance? arrive late ?? All of the above ??!
Thanks

Anna x

[contrarymary]

Yes, I hope the dream was a one-off, too, Anna! I kind of think, now the most active part of treatment is over, some of the fears I suppressed earlier are perhaps creeping back in. Even if you're a positive person (and I am), you can't help but worry, can you, from time-to-time?

Alex - I've got 3 Glenn Harrold cds. I only occasionally hear him all the way through. He was a total lifeline for me when I was first diagnosed (the main one of his cds I've used is Heal Your Body). It relaxed me, helped me sleep, and gave me a couple of really good visualising exercises to boot. Had to laugh at you listening to Glenn fighting against snoring! Have you got his Deep Sleep cd then? I also have that, but so far haven't used it so much. I'd maybe try a separate room before a divorce...

Went to my GP today, to give her my prescription (my local Pharmacy have given me Wockhardt for my next two months). I also had a number of bits of my medical file to give her. I'm now getting a referral to the Gynae people, as I had a scan during a clinical trial I was on, which was followed up to reveal fibroids in the endometrium and polyps. I decided to worry about one thing at a time, so put it on the mental and physical back burner for my BC treatment. As tamx has such delightful side-effects, I didn't want to wait any longer to get the fibroids & polyps investigated. So it probably won't be long now before I'm back at the hospital with them looking at the other end! Fingers crossed there's nothing sinister to be discovered...

Feeling a bit achey today - but the 20 minute speed walk I did might have something to do with it. I feel that if I keep up the level of exercise I've been doing, it might help with some of the SEs that might be on the cards.

[Guest user]

Hi girls, hope its ok if I join you. Have been on Tamoxifen for a whole month and not really noticed any changes just yet. I also take a bone strengthening tab daily as they found secondaries in five "hot spots" about 5 months ago mid way thru my chemo - havent had period since May - is it likely they will return does anyone know? Get a bit flushed half way thru the day but manage to sleep ok - prob cos I am soooo knackered as a single mum working full time - its good to share our SE's and experiences - was on a brilliant thread all thru chemo but we have all now finished - most are having rads now but they didnt give me it in case they want to blast the bones! Look forward to hearing more experiences, best wishes, Debbie x

[Guest user]

Hi girls
Have been on tamoxifen for a month now, so far only side effects are I get really tired, and also cry at the drop of a hat over stupid things, which is not normal for me! I agree some of the side effects listed in the leaflet are pretty horrific though, like cervical cancer! As if any of us really want to take something that could do this to us... Jackie

[alexamay09]

Hi Buddies
hope you are all coping with the dreaded tamx. I have had a lot of aches and pains - lower back (though I've had problems for ages), elbow, shoulders, neck, etc. Don't know if its tamx or just me! Kept worrying about secondaries but I think that is natural in our situation. I bought a CD by hypnotherapist Glenn harold to help me sleep and find that listening to it puts me in a very relaxed state. Hoping that continued use will make a real difference to sleep. Mind you, while Glenn is lulling me into a lovely relaxed state, OH is snoring merrily next to me. I tried giving myself a hypnotic suggestion "each snore will make me deeper and deeper asleep" ..... unfortunately that particular suggestion didn't work. Perhaps a divorce......
alex
xx

[annalou24]

Hi Mary,
I'm on APS brand as well, started them on 11th Sept ( a date not easy to forget!). I have not experienced any bad dreams at all. Hope yours was just a one-off?

Anna x

[chipper]

one more in the first packet to take, so that makes it 3 weeks- all still ok. Hope everyone else is managing too.

[contrarymary]

Heh! Will be taking tablet #2 tonight. I took #1 last night at 11pm. I'd said I'd start at the beginning of October. Only read the leaflet just before I took the tablet - boy, are there some scary possible side-effects!

I've decided to keep a note of how I'm feeling each day, and anything unusual I feel. Sort of like a policeman's note book for "notes taken at the time"!

I'd decided to wait nearly a month from finishing rads before starting to take the dreaded T (APS brand for me, don't know what I'll get for the next batch as I've not taken the prescription to the GP for the renewal).

I've two questions for those of you who have become veteran tamoxifen takers:
1) how quickly did you start experiencing side-effects?
2) did you start having horrible dreams?
Second question is because I had a dream that was so awful it woke me up, and I didn't want to go back to sleep incase it came back! All about cancer of course...

I have a feeling I've started my period - great timing!

I've lost a teeny bit of weight, but reduced in size because my fat has been gradually converting to muscle - 40 minutes brisk walking every weekday lunchtime. I'm lucky because I work in a department at my place of work where there are loads of keen lunchtime walkers, so I've always got company. I'm hoping I don't end up feeling achey and therefore unable to do the walk, as it's a real mood lifter.

I use sweet marjoram oil on a handkerchief under the pillow as a sleep aid (decided to try my best not to take any tablets, even my Kalms or the melatonin I've got, for the time being).

[annalou24]

I've been a bit more weepy since I've been on Tamox too.But I think it is probably a good thing for the inevitable grief to come out ...