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******The 36th TAMOXIFEN thread******

(1000 Posts)
NedSchneebly Fri 10-May-13 20:02:25

<drags trolley in>

You all out there? Pop this way!

Copthallresident Wed 29-May-13 14:02:10

I think feeling anger, self pity, fear, injustice, grief, wondering what on earth you did wrong, hopelessness are all very normal reactions to a Cancer diagnosis, especially if it is a particularly rude one, one thing it ain't is fair. The problem is that some collective arse in society decided Cancer patients have to be brave and fighters and positive and all the other words we are a bit hmm about on this thread and so you feel it is wrong to feel perfectly normal reactions, though there is absolutely no proof it makes any difference to your outcome . Of course if it is getting in the way of enjoying life it makes sense to find ways of coping, counselling, mindfulness, in my case visioning and yoga etc etc .

To be honest I am still a little bit angry, angry about the effect it had on my girls, angry about the treatments and long term side effects, angry about the ridiculous media coverage that feeds all the misperceptions, and angry that not everyone in Britain, let alone the world would have access to the standard of treatment I had, but I hope it is a healthy "I'm not going to roll over, let it carry on and say it is all OK" sort of anger, the sort that gets me active on other issues. I only get the odd attack of inappropriate Tourettes blush

Topsy Just to give your imaginings of the Magic Kingdom a twilight zone quality, Little Copt was conceived in that Disney caravan whilst we were subjected to a barrage of Little Mermaid influences. You have seen the pictures, freaky eh? We try and tease her but she embraces her inner Little Mermaid grin Good little swimmer too....

KurriKurri Wed 29-May-13 13:10:31

Malt - don't be scared by others bad experiences - some people really do sail through (my SIL for example - had very few side effects, didn't lose her hair, and worked part time through out (she is also a teacher)) - that is t illustrate how experiences can differ, not to suggest anyone should try to be superwoman and do everything - the majority of people will, I think, feel a bit rough for at least part of their cycle, and then have some good days to recover and do things before the next cycle.

Again I know we keep saying it, but it is the apprehension and fear of the unknown that is s scary, once you have had a couple you will know the routine, know what happens, where you go, how long it takes etc etc. (If you are like me) you will be going into hospital armed with a lunch box of treats and snack, books, mags, ipod, whatever makes you comfortable. It's like everything else in life - you get used to it, and you will get through and cope in your own way. xx

KurriKurri Wed 29-May-13 13:02:44

Oh - yes to chemo brain, had terrible brain fog when I was on it, - and my memory has never totally recovered (I used to have a very good memory) but I do lots of crosswords/quizzes/ puzzles, and read a lot to keep my brain as fit as possible (I suspect natural deterioration due to old age probably playing a part anyway!)

KurriKurri Wed 29-May-13 12:57:12

EMIN - my chemo experience was not too good, and I can write down if you like - but not sure it would be helpful - most of the problems I had were directly related to the fact that I had an underlying bowel problem from a previous gynae op., and to the fact that I took part in a trial - four accelarated chemos (FEC) (2 weeks apart) followed by eight CMF - so hefty and close together, and it was all a bit too much, and suffice it to say I was poorly, but I came out the other end.

If you want the details, let me know and I can give them - but don't think it would be particularly helpful to you, as not a proper comparison to your regime and of course everyone reacts differently.
I did lose all my hair after just before the second cycle - despite the cold cap, which I tried but it didn't work for me (I have a small head and it seemed far to big) - my SIL had cold cap and it did work for her - so worth a go maybe, but it is very cold and not particularly pleasant.

Apart form the unpleasant effects of chemo, I found the staff very very caring and helpful, (I also had the added benefit of a trials nurse who was a lovely woman) - mention any side effects at all - and they usually have something that helps, - keep a notebook of how you feel each day because you might get something early in a cycle and forget to mention it when your next appointment comes round, and also - you can start to see when your better days will be and plan accordingly.

Always ring your unit (or if it is closed your cancer ward) if you have any problems during a cycle, and always always ring if your temp goes up - and they will advise. Buy a good thermometer and keep an eye on you temp as a regular thing.

Sorry - that's rather a long post! will post again later.

trice Wed 29-May-13 12:41:59

I howled like a baby all the way through my first infusion. I was so scared and angry and sorry for myself. I have apologised to the nurse who had to put up with me since. Apparently it wasn't an unusual reaction.

Apparently the anger is part of grief. I lost so much, who wouldn't be sad and angry and hurt? Having someone say to me that yes I had got the shitty end of the stick and that it was normal and sensible to cry and rage over it helped. I know there are people who are worse off than me, but back in 2007 I had a lovely perfect life, with not a care in the world. I miss it.

On the plus side, my dcs are happy healthy and lovely, I have a fabulous loving caring Dh a great family and lots of friends. And a lovely group of supportive online folk who understand what I am going through!

trice Wed 29-May-13 12:16:29

Sorry for scaring you Malt, you will be okay. It is manageable. I am a wuss about everything medical, I don't like needles, I hate being touched by strangers etc but the nurses are generally kind and have seen it all before.

jchocchip Wed 29-May-13 11:53:14

I know that in the grand scheme of things this is nothing but I got v upset when dentist cancelled us for 3rd time. angry sad Could have spent some time with mum rather than rushing back yesterday...
Have finished dd1s student loan application just now so things a bit better.
What shall I do next? brew while I think. smile hope good days are being had by all...

Morning all,

EMIN you've probably seen me whinging about my chemo but I think most of that is because of the bowel surgery rather than just the chemo. My main issues have been diarrhoea and basically nappy rash. The skin around my bottom has been completely burnt off at the mo, so it's very painful. I'd recommend using cream, Drapolene works for me, if you start getting any diarrhoea as it's easier to prevent the skin problems than cure them smile other side effects have been tiredness, nausea, feeling very achey and bruised all over, and I'm not allowed to eat or drink anything cold or touch cold things for seven days after the infusion as it could cause a laryngeal spasm. The nausea is well controlled with various drugs and is getting better with each cycle. My hair has thinned but the new hair is coming through slightly differently! More wispy and blonder than before. I had keratosis pilaris and acne rosacea before chemo but it has cleared those up grin also have barely had any spots for months despite crappy diet and not always bothering to cleanse my face properly blush skin is very dry but bio oil and body butter help with that.

malt I have an infusion every three weeks followed by tablets for two weeks, then week off. I'm having eight cycles so about six months in total, bit longer due to a few delays. Definitely avoid google but if you have specific questions the Macmillan website is quite good - my oncologist printed out info from there for me about my chemo. They have details on all the different chemo regimes so once you know what regime you'll be on you can see what the side effects are etc.

betsy sorry you're not sleeping well, do mention it to your doctors if it persists as they may be able to give you something to help smile also most of us only posted about ourselves to start with, I certainly did, it's a massive thing and takes a lot of getting used to. Post away, someone will almost certainly know the answer to any questions smile

trice I have a lot of anger too, mostly at the GP who fobbed me off for over a year angry I get all worked up just thinking about him. Would you mind sharing how you dealt with it?! smile I know it's not productive so I don't want to be all consumed by it

notJ have fun in New Forest, am jealous, it's so beautiful! I hope hooligan pup behaves himself smile

Waves to everyone else! Hope you're all having a good day smile

well, that graph thing says I've got an 79% chance of dying from cancer but also says there's a 69% chance my nodes were involved. (they were't.) i'm taking this to mean i will LIVE FOREVER no matter how illogical that sounds.

Copt - great to hear you got a Master's post chemo. The brain fog is my worst fear as well, that and not being able to feel anything with my fingers.

Amber - any way you could explain more about the cold mitts and frozen veg? I'm on doxetaxel next and really want to avoid neuropathy if possible.

I've had 4 sets of EC/FEC every 3 weeks and am halfway through chemo. My hair's out. The worst bit was when it was falling every time I touched it, I've been ok since cutting it all off and there are a million youtube videos explaining how to do headscarfs if you're interested. So far eyebrows and nails have stayed, but colds without nose hair are interesting. Keep the tissues close by! I am tired week 1, get digestive stuff (constipated with the steroids first few days then loose, heartburn and just generally odd) but still hungry and have gained weight. I got an infection my first round and they've been dosing me up with magic injections since then, which seem to keep my immune system functioning. You can do it if you need to. I couldn't work as well, but there are lots of times when I feel very normal.

also - get the under skin port if possible. i really miss being able to soak in the tub.

trice - i want to read your experience, anger and all. there's a lot to be angry about!

betsy - welcome and sorry you've got any reason to be here

topsyturner Wed 29-May-13 10:32:08

See ? That's the thing about chemo , it affects each person very differently .
I had the "spa experience" that Cop mentioned .
It cleared my (pretty extensive) psoriasis away completely .
I was able to go sleeveless and bare legged for the first time in years .
And I never got any infections , or even so much as a cold !

But then you get some people who are hospitalised with every dose .

It's an arbitrary bastard , that's for sure !

But between us all , I'm sure we've had every side effect going . So we can offer tips for coping with everything .

Malt if you have chemo , they will prob advise you not to work . You are a teacher aren't you ? Kids are the biggest germ factories going , so you really don't need exposing to them during chemo !

trice Wed 29-May-13 10:29:30

I am glad you had a good time at Disney land mas. My dcs would love it too.

Copthallresident Wed 29-May-13 10:11:16

It did burn out my veins as well but I would still not have had a line as swimming , and just feeling normal in good weeks, was important to my morale. Personal decision.

malteserzz Wed 29-May-13 10:07:26

Shit it's scary!
I have got to have it, my consultants mentioned it at every appointment. But this is about earth not me

Copthallresident Wed 29-May-13 10:03:43

Mas done even before typed!

Forgot to add that aside from getting to live, you may lose weight, get very clear skin and your hair grows back full and curly, the spa treatment benefits of chemo grin I did actually look younger and fitter once I had recovered from the more immediate effect of making me look like I had emerged from a concentration camp .....

Copthallresident Wed 29-May-13 09:54:07

Topsy gringrin grin

EMIN Malt I had a relatively grotty experience of chemo, it was 6 cycles of FAC , supposed to be given every three weeks, but it was still very different to my phobia of it beforehand. Perfectly possible to carry on with life. Hair loss is really not a problem when it happens, providing it doesn't happen in front of trophy wife mother's coffee morning, that was a bad idea! I wore scarves because luxuriant wig in place of lank locks a mistake! It was given by drip over 3/4 hours and I would feel a bit fuzzy after but well enough to go out, the mother of all hangovers would hit the next day, which was what it felt like. For 3 days I felt nauseous and my sense of taste was affected so couldn't eat much, got terribly constipated, then that would all wear off and would feel fine by week 2. In the first cycle I got a scary infection in week 2 , I stupidly didn't go into hospital at first sign of symptoms and it turned out my white blood cells had been wiped out but after that they reduced the dose, i gave myself daily injections in week 2 to boost my white blood cell count and I was more sensible and I didn't have another problem. Week 3, and because my white blood cell counts kept being too low and slow to recover delaying the next cycle, often week 4 and ultimately week 5 were my good weeks when life was pretty much normal, in fact to be lived to the full, would swim, go to gym, schedule lots of socialising and piss ups it all got harder by the end, got a bit worn down and depressed but I shared the experience of treatment with other mothers of young children and we kept each other laughing throughout. And of course it did wipe out those Cancer cells, the little buggers. In my group of cancer buddies we did all have pretty much the same experience. But I know some superbeings wink people have very few side effects. I was most petrified of chemo brain, more so than hair loss or anything else but i have gone on to get a distinction in a Master's degree though would forget head if it was loose . With secondaries some seem to have a regime of daily tablets, MAS will fill you in on that.

EMIN am on capecitabine like trice and am sure it's less of a faff than intravenous chemo,though it will be part of my life until it stops working,which is 2 times a day for 2 weeks with a week off,bloods every third week - I feel very tired,have prickly hands (but miles better than the awful hand and foot problems I had at first) and bouts of nausea and sometimes diarrhoea but they do give you loads of anti-sickness/anti-diarrhoeal and anti-sore hands meds.
I was dreading Disneyland as it was just me and ds but once there it really grew on me particularly as ds absolutely loved it !

trice Wed 29-May-13 09:38:31

I have had counselling for my anger about my cancer. You should have heard me before!

I shouldn't talk about my experience. Most people do a lot better than me, I had a big tumour (7cm plus 3cm), I was breastfeeding and it had spread to all my nodes. I am lucky to have made it this far.

trice Wed 29-May-13 09:29:57

Malt - it depends on the drug. I have always been treated as an outpatient. Just going in for the infusion every few weeks, or at the moment pills twice a day for two weeks with a week off. Some medicines need an overnight stay. I hope you escape it. It is not something you would wish on your worst enemy.

My biopsy came back as Dcis which they emphatically stated meant I didn't have cancer merely a precancerous condition (hollow laugh) . But then my hospital thinks they can weigh you by guessing.

trice Wed 29-May-13 09:17:52

Emin - for chemotherapy all done as an outpatient, I had EC90 first time round, four cycles, wore a cold cap which saved most of my hair. I lost all my body hair including eyebrows and lashes and all my toenails. It burned going in, it scarred all my veins, it made me feel sick and tired. I certainly couldn't work so hats off to amber. My fingers and toes went numb, my eyes went blurry, my nose ran like a tap, I had a horrid taste in my mouth and problems sleeping.
Then I had 4x taxotere which didn't hurt going in but still made me very tired. I had terrible out ulcers. I slept a lot. Blood count held up well. It took 8 months which passed slowly but thankfully I can't remember it very well. All the photos of me make me look like a rather miserable boiled egg.

But I got through it. All the indignity and the pain and discomfort were unpleasant at the time (I lost all the skin in my butt crack at one point which really hurt and is not something that they put in the side effect leaflets!). But were short lived in the scheme of things.

Then I had radiotherapy which was fine apart from slightly sore ribs. Then five years of tamoxifen with zoladex implants every month.

Currently taking capecitabene which is pills so easier to take, not in hospital. Side effects so far are sickness and dihorrea, tiredness and stomach cramps.

It is hard being an invalid. It is hard for my family who have to be carers. It is boring and frightening and uncomfortable. But it is doable. Just about.

It seems like I will have to be on some sort of chemo for the rest of my life. It beats the alternative. But only just.

Sorry to not be terribly perky and upbeat, but I think most people would agree chemotherapy is not fun. But if you have to do it, you will.

malteserzz Wed 29-May-13 09:13:30

Plus I don't want to google !
Can't believe nobody likes Disney, poor mickey smile
NotJ enjoy the new forest think the weathers going to be ok fingers crossed
Gps taking the kids bowling today I'm not sure if I have to go or not ! I'd quite like a bit of time to myself tbh but maybe I should go and do these things while I can ( mean with having op not other)

malteserzz Wed 29-May-13 09:01:58

While we're talking chemo can I ask how long does it normally go on for? Do you go in weekly for it ? I'm clueless

topsyturner Wed 29-May-13 08:57:17

Am sniggering at the thought of Gigs being followed round The Horror That Is Disney by the full cast of The Little Mermaid , all head tilting and saying "Aw , isn't she brave ?"

<searches sky listings for French news channels to keep an eye out for "woman runs amok in Magic Kingdom story">
gringringrin

topsyturner Wed 29-May-13 08:53:31

EMIN what exactly do you want to know about chemo ?
Ask ANY questions , nothing is out of bounds here .
Do you know what type of chemo they are suggesting ?

My experience of chemo was largely positive .
I was horribly sick with the first dose , but they soon solved that problem with a syringe driver full of anti sickness meds . I had one for 5 days after every dose (FEC)

Apart from hair loss (which I really wasn't bothered about) I had very few other side effects .
A bit of chemo bum , no infections or neutropenia .

The tiredness and the symptoms do tend to build up with every dose you have . So by the last dose you tend to be a bit knackered .
And I would advise a picc line of some sort , as the chemo knackers your veins .

Hope some of this puts your mind at rest , and as I said , ask ANYTHING !

notJenkins Wed 29-May-13 08:32:00

Good morning from me, throwing chocolate breakfast cereal on the trolley as we have some in for a holiday treat.

Sorry you are here betsy and the waiting for appointments is hideous.

I had a horrible few days of miserableness and paranoia but now know it was pmt fuelled. My hormones are all over the place now I am on a higher dose of meds and I can't sleep well either.

We are off for a day out in the New Forest today until it starts raining. I have visions of the hooligan puppy jumping all over a wild pony, getting wounded, causing a stampede and making a big scene so wish us luck.

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