Tamoxifen - advice please !

[MargaretMountford]

Am going to be starting Tamoxifen shortly, was just wondering whether anyone else is on it and can tell me what it's like ! thanks !

Oh God that sounds absolutely horrible, much worse than anything I have had from the chemo. Hope they can suggest something that will help it heal more quickly. I should think that's a real infection risk.

I think I may have to take dd to see the consultant on Friday -fortunately more of a chat than a detailed examination. He'll never get a word in edgeways, though. She'll be needing to tell him something absolutely vital about our weekend away or school or swimmng something. He has no idea of the onslaught that awaits his ears........

at dd and consultant !! ds is worried that he might be given a blood test ! (he does go to the hospital every year for one but have reassured him that this is different department !) Am sure chest will improve - I think it's a case of getting worse before getting better - ideally one should be bra less but I think not !! besides skin would still rub.

Ah yes - going bra-less. Not a good idea in my own case either, I did it a lot immediately after the surgery because my scar was right on the line of the band underneath my left boob. It was unavoidable but not a good look, and didn't feel nice either. And it IS going to rub, regardless.

I forgot to ask about aloe vera - am so sorry !! Had a very constructive talk with my very nice bcn for about 3/4 an hour..she was great and got me some dressings - she says to keep the skin under the breast dry,so no aqueous there.It should heal up ok though.
We discussed tamox and she suggested trying it for 4 weeks and if I feel that I can't cope with how it makjes me feel then to stop. If I'm ok,then keep on. She said also that I need time to rest and recover from everything and perhaps to try after the hols,preferably when I perhaps have another project or work to help me not fixate on tamoxifen ! She's asking the onc. for stats and figures which might give me more of an idea of how effective it could be in my case.
So a good visit, though my head is still spinning.
Disgusting bits of skin floating off me in the bath..yuck.

No worries at all about the aloe vera!

She does sound good, and her advice is highly practical. You do need time. If you are going away that will help a lot.

I went away after my first lot of surgery and it really helped me to relax, even though i knew I had to return and have some more (it was a bit of a downer travelling back, though!).

A bit of distance from the whole experience is required now, and there sounds like there is no need to make any irrevocable decisions at any point - stopping always an option. I must say, although I feel fine in myself (at least until my next zapping next week)I am finding dealing with dd a real challenge. Am fine when working (like today) but yesterday I had her all day and I was snappy and felt physically ill just from the constant bloody talking! Then she had the gall to say she couldn't wait until today "because Nan always plays with me". Aaargh!! I played schools for THREE HOURS!!!

We all need to give ourselves a chance to revocer, which is not always easy.

Must say the floaty bits of skin sound very yukky.

that's grandmas for you - they give undivided attention,usually, tis hard to live up to...ds is always trotting off to see his..she feeds him all kinds of nice stuff too.

Cakes abermum -everyone - how are you all ? have been away for a week to Suffolk,which was lovely,changeable weather but some gorgeous days too..my mind still spinning a bit - it's very hard to switch off.Exhausted on arrival though,suppose things just caught up with me. The dressings have worked a treat and am all healed nicely - hooray ! My surgeon says that taking tamoxifen would give me in the region of 5% benefit - this seems small, so am still in a flux of indecision.

Hi maryAnn

Glad to hear you had a holiday: I LOVE Suffolk, so peaceful, probably just what you needed. Good too, to hear that the dressings have worked so well.

I know what you mean about the 5 per cent thing - it is a hard decision to make in your case as you are so ceoncerned about side effects - but, personally, I'd go with the five per cent. I am going to take everything offered! Greedy, or what?

I have just had my third chemo cycle, and still feeling OK with it. Bald as a coot, though. And have just buggered up the injections I have to give myself - they have to be given at the same time every day, but i went out for the day yesterday and forgot it. Eventually taken 6 hours late. Ooops!So now we are trying to decide whether to revert to the right time, or go for the later time from now on - district nurse reckons go for the later time, but is ust double checking. Clearly it was too much responsibility for me to handle.....

Oh Cakes, you are brave doing the injection thing - am glad the 3rd chemo cycle seems ok so far...it'll be over one day and then you'll find rads really quite ok I promise.

Thanks! (We have gone in favour of the later time now, so I'll just have to see if I can stick to that for the next few days.)

When you say 'OK' - is that OK apart from the burns??!!

It does sound yukky, glad you are through it now.

I hope Abermum is OK - don't suppose we will see her on here as she is trying to avoid someone odd following her about.

(Whispers) If you are lurking here Aber, don't bother saying anything - we just wish you well...

well,am sure it is ok,compared with chemo !! no really, it is ok - the burns aren't nice but they seem to heal up quickly with a bit of care. I think I went into rads thinking it was a piece of cake as that's what my dad who had it for prostate cancer and my SIL who'd been through chemo and herceptin then rads told me - so I just assumed it was ok and I shouldn't make a fuss !

Sometimes, I think it might be nice to make a fuss. Really start shouting and being a pest.

Just to see what people would do.....

yes- it would probably be very therapeutic !

hello, hope you are ok Cakes. Am feeling in a weird place..the end of active treatment is odd as it's been full on more or less since the end of April and diagnosis and now it's as though I'm on my own. Of course there are the bcns and I'm seeing mine again in September just after I start tamox. (think I have to try really) - I feel a bit pathetic but I gather it's a common feeling. If you haven't had chemotherapy I think people (not everyone of course) but some people think that you're all cured and back to normal,which doesn't really help - I feel physically fine but a bit mentally battered and not sure how I should feel really.
Sorry to be so self indulgent- will be pulling myself together shortly

Hi,Just wanted to chip in with my experiance of Tamoxifen,for what it's worth! I was diagnosed with BC and extensive DCIS last December(had a mastectomy - because my actual cancer was small I was really lucky and didn't need chemo or radiotherapy) - I've been on Tamoxifen since January ,and apart from the fact that my periods seem to be vanishing,I've not noticed any other side effects at all.And the period bit is something I was heading towards anyway!I was worried about the side effects,but felt I needed to do everything possible to deal with the cancer.I'm planning on having a prophylactic mastectomy on the other side in January 2010 - if the Swine flu doesn't disrupt normal service!
I know what you mean about the end of treatment,MaryAnn - for me it was the diagnosis,lots of tests,surgery,physio - then I'm discharged and it's nothing till a mammogram in November - I know that's good as they are happy I'm Ok but it still felt really weird! I feel fine physically but mentally I think I'm a bit more shaken up than I'd realised at first.
Sorry,long post -and I hope you'all don't mind me appearing.
You all sound as if you are dealing so well and positively with this difficult stuff!

thanks pogleswood - that was a thoughtful and helpful post- encouraging too..do stick around,you are most welcome !

psst i am here!! under yet another guise

How are you all doing?

i am.... well... crap at the moment tbh. Had a bad few weeks with meds really disagreeing with me, and random pains and sore bits which of course always lead to me fearing the worst! Have a full cat scan tomorrow as have abdominal pain again- onc thinks one of two things

a) the frankly unthinkable, cancer spread to abdominal membranes which could lead to organ secondaries

b) the far less scary- slipped clips, when i had my oophorectomy (ovary removal) they left my uterus- long story but it was something to do with hrt and my age, anyway due to all the surgery in that area it is held in place by plastic staples to stop a prolapse- if i overdo things of lift heavy things or generally do something stupid then they can tear, one tore totally quite a while back and i had to have emergency surgery as i was bleeding internally, so i am hoping that this little episode is just a clip that has slipped slightly- so no surgery just lots of bed rest

On the whole i am living in my bedroom, we have had to employ a nanny for the kids over the holidays- i just couldn't cope, but it'll be back to school soon and then i'll only have the little'un at home and she's not really a problem

oh please let it be slipped clips - lots of good wishes and positive thoughts for tomorrow xxxxxx

thank you MAS- i needed to come here and tell someone- the 'outside world' is feeling a little scary atm! Will let you know how i get on

thinking of you xx

Hi all!

MaryAnn - sorry you are feeling vulnerable at the moment: as Pogleswood says, i understand it is a very common feeling. I am glad you are having a try with the tamoxifen, you deserve to give yourself every chance. Stay strong.

Pogleswood's experience of the drug sounds promising - thanks for that!

So sorry to hear things are tough at the moment Reallywoundup: I will be thinking of you and hoping it is the clips, some nice bedrest sounds good.

Not too much though - I have just (this very morning) been slung out of hospital after five days being barrier nursed in isolation room - turns out I have swine flu. I felt like crap - but not for very long. I have been beyond bored, and have read more that I ever thought possible. I know EVERYTHING there is to know about celebrities at the moment (even if i don't know who they are i know a lot about their love lives) and have also read a great book. Couldn't read another thing for a while, though!

Feeling a bit guilty about it all really - I got admitted to an open ward and was on it for 24 hours before someone decided to test for swine flu and put me in isolation. Hope I haven't spread it around the whole place, but probably have. I am still in quarantine, but at least doing it at home now.

Cakes !! swine flu !! poor thing...hope you are feeling much better now- that's probably the last thing you want on top of everything...
Reallywoundup - lots of love to you too xxx

Hi all - feeling a bit better today, but hoping they postpone next treatment: could do with a break to recover. Am knackered, sleeping 11 hours a night and battling to stay awake the rest of the time.

Any news from Reallywoundup? Hope you are doing OK. Thinking of you and hoping for good news.

hello ladies! i am back- they have let me out of the ward of doom ! had the CT scan, the clips are in place so that's been ruled out BUT there was no obvious sign of metastasis (ie no lumps, fluid build up etc) so was held against my will advised to stay on the ward so that i could have regular bloods and general checks and some lovely morphine .

They have so far found nothing- onc has mentioned IBS so maybe??- waiting on a few crucial tests now- hormone levels etc. Also finally got the genetic testing done- will wait with baited breath to see if dd will need to be tested later on!

On the whole i am fairly positive now, taking things very easy the next week or so- maybe i'm over-interpreting symptoms and its just wind IBS [hopeful]

Cakes- piggy flu hasn't hit here (yet), i've been told that i will probably be vaccinated as i have a compromised immune system from chemo- no-one's too sure yet though! Hope you recover quickly and you get a bit of a treatment 'holiday'!

MAS- the end of treatment- i have never got quite to that stage, but the times i have come close has felt a bit weird- i remember what i thought was my last radiotherapy session (was a tad naive and thought it would all magically have disappeared- despite having been told quite the opposite!) I left the hospital thinking- ooh what now, we should have a party- i actually fell asleep on the sofa, but i know it can feel quite disconcerting to not have the 'routine' any-more- almost feels like you are being thrown out of a club.
You should celebrate though- it is a massive step back to 'normality' and a sign that you have done something very special- you have been on an emotional and physical journey, a journey no-one would choose, but someone has to take. What you have done lady is cope amazingly with the crap that life throws! WELL DONE

reallywoundup - thankyou for those really nice words - I do appreciate them very much - and am feeling a little more ok now.
That's excellent news that there isn't any spread though still puzzling - and great that the genetic testing done too, fingers very crossed for good outcome. Will be thinking of you lots, and Cakes too - hope you're feeling perkier !
I think I will be offered pig flu jab and regular flu jab as I don't have a spleen and therefore theoretically more susceptible to infection (strangely I never seem to get things much or suffer badly which is funny/good) It was removed when I was 6 because of a hereditary blood disorder - my ds has it too,but still has a spleen as he is so far not affected.
lots of love to you both xxx