Tamoxifin Buddies wanted!!!

[Jellylegs]

Hi Jenhar,I think it is a bit of both, grief and Tamoxifen. I can't remember ever crying so much and in the wrong places too and I've always considered myself very strong.

[Guest user]

It seems I am to be in tears at least 3-4 times a day over things I would normally cope with.. Is this the tamoxifen or is this all my grief coming out??

[sarah41]

had clear mammogram 1 month ago, but getting lots of aches and pains, sore under breast that had surgery on - feels like rib is bruised - more uncomfortable when sitting. been on tamoxifen for 18 months anyone else getting more aches and pains than usual. history diagmosed aug 07, grade 2 1.8 mm no lymphnodes involved. been given 95% chance it wont return - but still worry and dont like all the aches and pains - have seen DR and am being tested for arthritis in fingers and am takinh anti inflammotries for 4 days but no improvement - any advice?

[Guest user]

Hi
Yup! I'm like you Alex lots of Hot flushes and the sleep thing is still a problem.I have got sleeping tabs but try not to take them too much,the last time I took them I still managed to wake up 3 times an be awake for a couple of hours.It was suggested that I try an take them a few days in a row to see if it would brake thecycle...Boy oh boy! after 2 days I was Crap!! it was like being in chemo all over again!! So I'm just gonna put up with wakening up at 2.20am...Strange it always seems to be around the same time of day!
Take care everyone and those about to start Rad let me know how you get on I start at the end of Oct.....Seems to be ages to go yet1

Jenhar
xx

[chipper]

hey Alex - was thinking of you as I was not feeling brilliant this w/end -sleeping wise -which was a shame as we were on a lovely weekend away at a posh hotel - my husband reckoned the duvets were more plush than ours so I got very hot- also felt not quite right BUT again think this could be because we were away and the anxieties that ensue from that (I had a fab time and loved it but I wish I'd felt less churned up !)

[alexamay09]

Hello girls - big hugs to all about to start radiotherapy. Hope you all get through it ok. I just had 16 but had no real problems at all. Nearly 3 months on tam now. This last week or so I have had less intense flushes and sweats and am hoping this will be long term. Am on Wockhardt now and have had mild nausea and the usual sweats but nothing else. Sleep is still a bit of a problem but never mind. Hi Chipper! Hope you are still doing well on the tam.
alex
xx

[gocat]

Got through one months worth of APS Tamoxifen with hardly any side effects. New packet is that Wockhardt tamoxifen so will see if that brand will bring on the side effects (hope not).

Still havent got my antidepressant sorted yet. Went to print out the link I gave in another thread and it says not available. Wonder why that is?

[Jellylegs]

Hi Anna Thanks for your comments,I thought it was just me!! I suppose it has to knock your confidence a bit. I go for my rads tatts this tuesday in B'ham.

[annalou24]

Hi Jellylegs

I feel the same... Having mood swings and also slightly anxious about going out by myself...sorry you're going though it too, but also glad it's not just me, as thought I might be becoming agraphobic.(?)
Not had the hot flushes yet.
Rads planning on Monday. Have you had yours yet ?

Take it easy
Anna x

[Jellylegs]

Hi everyone,
Well,I seem ok apart from the waking up in the night with hot sweats.But I've also had them whilst shopping today!! My face went red and I looked liked I had been cooked. Oh this rotten C. The person I knew has disappeared. Boobs changed, skin dry,eys red,mood changes and to make matters even worse I feel frightened to go out by myself now. Things can only get better...Oh no I've got rads soon...

[chipper]

hi Mary - was thinking about you today ! Am now on day 16 and all ok. I thought maybe I was getting achy joints the other week,but my bcn assures me this isn't so and I just think it's tiredness.I do feel tired but not sure if I'm tired or it's tamox. I would say it's just tiredness. My brand is Wockhardt and I notice I've been given the same brand for my nexty 2 months - the lady in Boots says they order tamox and get whatever comes through. Hello Alex too - the sleeping thing must be a bugger - I have slept really well-I generally do except when my mind is ultra active which happens on occassion.Hope things go well for you Mary and that things improve for you Alex xxxx

[contrarymary]

Ooerr! I'm starting next week (Thursday is when I've diaried to start this adventure). Wondering if s/es start up straight away, or if there's any sort of honeymoon period!

I have some melatonin tablets I got in the states which are supposed to help you sleep, without making you drowsy. Hope I'll be able to try taking them if I get interrupted sleep (also got some Kalms, which do make you a bit drowsy). I'm going to have to start asking questions about what I can take pronto, as the idea of sleepless nights is not a great one. I get that already (pain from my back is the current culprit) and end up feeling wrung out the next day.

[alexamay09]

hi all
now about 10 weeks into tam. much the same as before - aches, sweats and flushes! I took a half sleeping tab the last 3 nights as I was so fed up of disturbed sleep. Well, I slept ok but just felt yuck all day anyway, so am going to revert to sleeplessness tonight! why can't they give you a tablet that helps you sleep but makes you feel like you've actually slept the next day?!! it was good because I wasn't wakened with the sweats but probably not worth it overall 😞
back to the drawing board.
alex

[kittenkat]

hi gocat - my gp changed me from prozac to efexor xl - had liquid prozac when weaning off it and was easier than cutting a full tablet out, I've felt fine on the efexor. I did hope to be able to leave off them fullstop but found that I got very anxious and twitched about everything so went for the efexor, as my doc says now isn't really the right time to be stopping, I need to be kind to myself!
I've been on tamoxifen now for 9 wks - has anybody noticed any boob changes - ie tenderness/lumpiness like I used to get pre-menstrually?? - not had one sice early May, am 44 and was pretty regular before. I sleep on my front mainly and have noticed my "good" side a bit tender/lumpy....mary x

[chipper]

2 weeks and 3 days down and still ok - am wondering about period,should be due in a couple of weeks

[gocat]

Last month didnt get my period when it was due, after starting tammox and now this months is due and started grrrr. Was hoping that would be one SE I get (i.e. no periods lol). Other than that still nothing major. No hot flushes. Still not taking the EPO but still taking the Prozac. Still waiting to see GP........

[annalou24]

Gocat

did you ring the helpline about these queries ? Or find out any info from anywhere else ?

I'd be interested to know how you got on.

My oncologist recommended EPO if menopausal symptoms were troublesome. He also said Tamoxifen is ok with most anti- depressants (including citalopram) except Prozac. Not sure what to believe though.

Hope you are doing ok.

[Jo_BCC]

Hi gocat,

There seems to be a lot of confusion with regard to Tamoxifen and what and what cannot be taken with it. Could I suggest that you give the helpline here a ring and have a chat with the nursing staff to help clarify things for you. Calls to the helpline are free, 0808 800 6000 and are open Mon-Fri 9am - 5pm and Sat 9am - 2pm.

Hope this helps.

Kind regards,
Jo, Facilitator

[gocat]

Aggghhhh it's all so confusing. I am another one that is not getting side effects with tam, and was told by my bcn that not everyone gets side effects and it doesnt mean the tam is not working. But then again the bcn told me prozac and tam is ok, and some on here saying no way is prozac and tam ok. BCN also told me evening primrose oil is ok (I've stopped taking that tho, as some here had said it stops tam working).
Cant just stop the prozac though and still waiting for GP to change it to effexor but is still looking into it due to what bcn has said.

[chipper]

that is quite worrying though, no side effects indicating tamoxifen not doing it's job - my bcn assures me that many people don't have side effects at all, and in a lot of people,even if they do experience some aches and pains,flushes etc they don't register them too much - must depend on general sensitivity and tolerance of these things...am hoping I'm in that camp as I am very seldom bothered by physical probs - my main area of trouble is my mind !! Anyway, it's day 14 I think and am still feeling ok - I was on a bit of a high last week for various reasons and feel myself coming down a bit.

[Guest user]

Hi all,

Hope everyone is coping OK. Can I just pick up on your last point Gingery? I've heard that more and more that the more SE's you get it means that the Tamoxifen is working. I'm quite worried by that because for 15 months (started Tam Nov 2007) I had absolutely no side effects at all. I mentioned that to one of the surgeons and he said did you have Se's at the beginning and I said yes, that's fine then he said. I've recently been having flushes again although no where as bad as they were in the beginning. Does this mean the tam is not working as effectively now? I'm just confused by the whole thing.

Cheers, I hope everyone has a lovely Sunday,

Take care

Veggie

[Guest user]

Hi Ladies,

just wanted to add my pennies worth.

I started taking Tamoxifen (nolvadex d) on Arpil 1st this year (apt date), I haven't had a period since January half way through chemo, I'm 47 now. I haven't gained weight (10lbs thoughout chemo) although I'm having trouble shifting it. I don't get headaches or feel sick, in fact my moods are more 'level' than they used to be. My sex drive hasn't gone, actually I'd say it's increased.

The only thing I've noticed is very achey joints, hot flushes (awful) and sleepless restless nights. So on the whole not too bad.

On the plus side, my onc said the more side effects you get the better as it shows it working.

x

[Jellylegs]

Hi,
I'm not sure if this is Tamox or not but last night I just cried and cried I just felt so sad at the way my life and my families life has been affected by this bl..dy cancer. But I did feel better afterwards. I think I've finally let some of the pain out I was feeling.Looked like hell this morning though.lol

[annalou24]

Am on day 8 of Tamoxifen. Have had quite noticeable mood swings and been more inclined to be tearful than at any time since diagnosis. Queasy feeling in morning,but not too bad and still eat breakfast.
Cramp in toes at night (twice) but sometimes get that anyway and can usually get rid of it by moving foot around, massaging it etc.
Jellylegs, I have a nice crop of spots on my jaw line and and forehead too! It should be my 12 year old son starting with these not me !!( luckily for him, he still has lovely soft little-boy skin!)

Anna x

[chipper]

day 12 here (I think it must be- 2 weeks on Monday anyway) and ok so far...had aching hands and hip last week but I think maybe that was tiredness/possible cold bug. Hope you are all rattling along ok too 🙂

[Jellylegs]

Hi,
I still feel Ok on Tamox,but early days I suppose!!
Headache has gone so has pain in my hips. (I take asprin and Oil of Eveniing Primrose) But I've developed spots. never had them even when I was a teenager. Keep trucking girls xx

[Guest user]

Hi everyone,

I blame e-v-e-r-y-t-h-i-n-g on Tamoxifen (anything from MPs expenses row to global warming!) but do acknowledge it is important to take it to keep my cancer at bay. So, please may I join you - I only joined this site today and it was wonderful to find so many others who understand about the side-effects of Tamoxifen. An earlier contributor mentioned someone saying "well, it's not chemo... it's only a little pill" (forgive me if I misquote) but three cheers to you all - perhaps we should all beat the drum and tell our friends EXACTLY how we are feeling instead of the usual "I'm fine" answer.

I am post-menopausal but I've had severe leg cramps, fatigue, sleep-disturbance, joint pains (now on co-codamol) especially having pain in my elbows. I sort of expected pain to be in weight-bearing joints... but in my elbows? My internal thermostat is all over the place - feeling cold when others are hot and vice-versa.

Good luck to you all and don't let the beggars grind you down!

AlexG

[Guest user]

Dear Shenay, No you are not selfish at all. It's your life and you choose what feels best for you. Apparently 37% of women come off Tamoxifen because of bad side effects and that's the one's that admit it!!!
best wishes
Leadie

[Guest user]

I posted on bone scan as well, I have after a long consideration decided to stop tamoxifen, it was costing me my mobility and also mental ilness, no sleep, low moods etc. I was informed that reaccurance was 20% without any treatment, i will be going to radiotherapy which may reduce it by two thirds and tamoxifen by further 1% PERCENT. Is it worth it for 1 percent and shitty quality of life? Also at the end of the day thre is no guarantee? with all that. it may come back regardless, so if i am able to deal with that
re accurance, why not. I may feel differently when i tell my family.do anyone think i am selfish?

[Jellylegs]

Hi, I've been off line for the past few days,so just catching up with all your posts!!
I have been fine on Tamox until the last few days and I seem to have developed painfull hips and knees.I've not beeen very active recetley because of dx so hope its just that.

[Guest user]

Hello ladies i am due to my last TAX 30.09 and soon join you on Tamoxifen as my CA is estrogen positive ..i want to say that hot flashes start with first TAX and now i am just week after second one the hot and colds flashes during nifgt are horrid and i feel so tired i am not looking forward to tamoxifen ...i want to think that i will be better after tax finish ..so from what i read here it seems never ends...i am also having radiation for 1 month so i have been told that tamoxifen will start 5-6 weeks after the last TAX ...i have been thinking of having surgery and get rid of my ovaries ect (to escape the tamoxifen if possible) i dont know what to think about it ...any of your opinions will be helpfull...Christina

[Guest user]

hi everyone

i too find im getting a little low at times, and very very tired at other times. i dont even have any negative thoughts going through my head when the low moods come, so im thinking it must have something to do with the tamoxifen, cos i feel i have accepted the idea that i have cancer, because underneath im the same person, and now im having a break from treatment, i live a better life than before.
i guess well just have to hope it will get better, and just try to calmly accept where we are at the moment. ( easier said than done sometimes i know.) but whats the alternative?

take care all x

[alexamay09]

the lack of sleep is one of the worst things. My flushes and night sweats are really crappy. My back always aches too 😞
I am not convinced that depression is an SE of the drug though - I think that it is probably a common and completely understandable consequence of going through this process. I also went through a phase of nasty cancer dreams but haven't had any since starting tamox so definitely not the drug in my case. The sleeping tablet trap is so easy to get into. I was taking half a tablet but then when I tried to go without I'd have a really bad night. Haven't taken any for ages but when I go back to work I suspect I will fall back into the trap again!
alex
xx

[Guest user]

I am 57 and have been on Tamoxifen since May, and have found I have become very anxious, fearful as well as depressed. I had a mastectomy and going through the reconstruction where a tissue expander is inserted under the muscle and every 2 weeks I get pumped up [so to speak]. But it is the emotional side that I find very worrying where for no accountable reason I become anxious. I did get very depressed for a few days and thought I would never recover, went to the doctor and I found talking to him lifted my spirits, but each day I wake up and wonder is it a good or bad day and inevitably its starts of good and gets bad. Is anyone else suffering emotionally.

[Guest user]

I am just so tired..again!! Having to resort to a sleeping tab tonight,as I went to sleep at 11pm an woke up at12.25 and got another hr in after that. I also have really bad nightmares (when I do sleep)does anyone else suuffer from really strange dreams???

[rachy7]

One of the main side effects i have found with the tamoxifen is the aching joints and nausea in the mornings. I end up taking painkillers but not keen on doing this long term. I do feel strange but under alot of stress at the moment so difficult to guage which is causing the problems.

Rachy

[chipper]

am feeling not quite right today btw..queasy and headachey -am thinking I just might be very tired and anxious,rather than looking for side effects.I walked into town just now and my left hip joint felt odd from time to time - do you think tamox. makes the ligaments relax,as in pregnancy ?

[chipper]

I love green tea and drink lots of it anyway ! no supplements though - before dx I'd taken selenium religiously but thought bugger it now -I really am not sure whether these things work !

[alexamay09]

9 weeks into tamox and still only SE is blooming flushes and sweats. They can get me down at times but so long as the tamoxifen is improving my prognosis I think I can live with it. Its bizarre how you feel ok one minute and the next this heat descends. I never knew you could sweat out of the insides of your elbows before!! Pity the sweat doesn't make you lose weight!!! After changing brand I had mild nausea for a few days but that seems to have settled. I take loads of supplements now - I never did before but figure why not! They are not related to the tamox though - I take vitamin D3 after seeing a youtube article about it, green tea, multivits, cod liver oil etc. I rattle these days!
alex
xx

[Janet_BCC]

Dear gocat,

I have attached the links to a couple of Breast Cancer Care publications which may have some useful information for you. One is the booklet "Complementary therapies" and the second if the Fact sheet "Menopausal symptoms and BC". I hope this helps.

http://www.breastcancercare.org.uk/upload/pdf/Menopausal_symptoms_factsheet_BCC18.pdf

http://www.breastcancercare.org.uk/upload/pdf/complementary_therapies_aug07_0.pdf

Very best wishes

Janet
BCC Facilitator

[gocat]

Now read on another thread that evening primrose oil is not good to take if you have BC. Cant win.
Will stop taking it for a while and hope I dont start the hot flushes (at the moment thinking it's the EPO stopping me from getting Hot flushes)

[Guest user]

Thanks Gennie, it's good to have such a quick responce. Glad to think that this "downy hair" might dissapear soon. Thanks xx

[rachy7]

The main side effects I have with tamoxifen so far are the aching hips, legs and ankles especially if I have been on my feet along time. I also feel a bit nauseaous in the morning when I take it (the cups of tea don't help this i think. I have been on tamoxifen for 17 days now.Best side effect is the weight loss !! I think the sick feeling stops me eating too much. I also had a change of other medications.

Rachy xxx

[Guest user]

Hi Gennie

I had cramp in toes and mild pain and stiffness in toes and balls of feet immediately on startng to take tamoxifen. This lasted for around 4-5 weeks before wearing off, along with mild nausea. I also still get cramping in the calf muscles which comes and goes. Hope your symptoms (assuming taxox related) aren't with you for too long!

Lots of love to all. Cathy x

[Gennie]

Yes tawny - it's a chemo side-effect I think. I had 8 cycles of chemo and lost my hair, when it came back I have downy hair on the sides of my face like a newborn. That all came before the tamoxifen so I can't blame it on that - and I know I'm not alone. Apparently it does go so we won't all have to grow mutton-chop sideburns and handlebar moustaches. 😄

[Guest user]

I have been on tomaxifen for 4 weeks now, following two cycles of chemo and 18 sessions of radiotherapy.

I have a soft downy cover of what I would describe as "fur" on my face and shoulders. Like babies have have. I hate it and hope that it does not get any worse. I don't want to end up looking like one of the seven dwarfs with a white beard. Anyone else got this problem?

[chipper]

am thinking that my hip[ joints are aching and my hands, but surely not so soon -it's only been 6 days

[Guest user]

Hi Jan

Thats useful to know. My GP doesn't think there is much difference between brands but my oncologist does and he told me about research thats been done. I'm having trouble tracking down a brand other than wockhardt. So next week I might trawl all the local chemists for Novaladex. Failing that I'll ask my GP to prescribe it.

Lynn

[Gennie]

I've now taken 3 tamoxifen and my right knee has suddenly become extremely painful - to the point where I am limping all the time and it aches like toothache. My ankles have also been very stiff in the mornings. Surely it can't have caused those side effects that quickly - it's coincidence right?

[Guest user]

I think I've made this comment elsewhere, but when I switched from generic Tamoxifen to Nolvadex D, out of interest I asked the pharmacist the price of each - generic costs about £3 a pack, and Nolvadex D is in the region of £13 a pack (which is a bargain compared to Arimidex which is about £75 a pack!).

When one sees the utter waste in other areas of the NHS etc, I really do not think that £10 a month extra to make a woman's life easier is much to ask.