TAMOXIFEN -the third thread ***

[MaryAnnSingleton]

here we are- will put a link on the old thread.

lol, for me too,first thing i have smiled at in ages,like proper smiled..
Hands are so infected so posts will be short as they are looking like a mummy,all wrapped up..Hope u are all enjoying the sun,cant drive this weekend so chillinh in my garden with my little farm,kid free this weekend too xx

from me too re cat on head!

Pennies - hope things are improving for you?

Smee - glad to hear you feel calmer. I think wehave all experienced that when ther's a clear plan you do feel better. On track, as it were. All that reeling/uncertainty/lack of clear way forward is so awful at the beginning and it can go on for weeeeeks...

Ebbie - sorry about your hands. I hope you enjoy the w/e.

I'm going to have a cup of tea with my frined who has Crohns today and see how she's getting on with her brand new treatment. KK btw she does have a specilaist nurse she can contact any time and who is very much valued. I am not sure when she was given this contact but its an IBD nurse. It probably depends on how clued up your hospital is/what stage of treatment you are and how severe your disease is.

My other friend (Non-Hodgkins lymphoma) had an encouraging meeting yesterday with specialist but needs to have all the scans now and a review in a month to decide treatment.
Love to all.

I'm OK - still in hosp for at least another 24 hours. I've just given myself a manicure and a pedicure and am now clock watching waiting for lunch.

My dad (a Dr) is doing his utter nut over an email I sent to friends and family updating them and expressing a wish to keep on with the high level dose dense approach if I can. I did in light hearted terms and expressed a wish to be able to finish my chemo in June as planned so I can go to the school ball, a la Cinderella. Obviously if I can't then so be it bt a girl can dream. Anyway I get an email back in capitals going FUCK CINDERALLA - YOU CAN DIE IF YOU'RE NEUTROPENIC. So that leaves me feeling so fed up. He goes and manages to yell at me an make me feel like I'm doing the wrong thing and he's not even in the country. He's been calling my mobile as well and I've been ignoring it beause I just can't hack the ear-bashing I'll get for simply expressing a desire to go on a night out. To coin the MN mantra: my dad, for example, is a twat.

Sorry. Ranting a bit there.

Ebbie22 - hope your hands are OK soon.

Haggis - how's the cat? Sorry, but I'm still very amused by that. Well done you for brightening what was a very depressing day for me yesterday!!

Smee - good news that you had a productive meeting with your surgeon. I feel that if you have a good relationship with your Drs then it makes the whole thing so much better because you can then trust them implicitly.

BB - hope you're rallying a bit now after your chemo.

SR - when is your next dose?

RWU - are you up and about again and released from your chariot? I hope so!

KK - How is your sister? And are you feeling less wobbly now?

MAS - Hope you're having a nice time chez MIL.

Have I missed anyone? I hope not. Apologies if I have, lunch has arrived. Om nom nom.

Pennies, hope at least the lunch was good. What is your dad thinking of?! There are so many ways he could say be careful/ or that he's worried - what a complete numptie. Any news yet when you can escape?

• Ebbie, poor you with the hands swathed. Must be annoying. Hope they're better soon. The sun and the garden sound like good medicine.

Haggis, hope the cat's not on your head right now - it's so sunny you'll cook.

O dear, Pennies, your dad seems to have lost it a bit. Is he always in another country or is this temporary? It is probably worse for him if he is distant from you? Also doctors like to be in control don't they, and he can't control this. (I can't imagine my dad using those words but he would have been feeling same sentiments I think! I'm quite gald he is no longer around as he would have been so worried about me.)

My next dose is due 10 days after the op. So its op on Tuesday then chemo no. 3 on Friday 23rd if all is well.

Hi all

Been away since Friday (quick decision, was going stir crazy stuck in the office with nice weather going on outside) so I have lots to catch up on. For those of you stuck going through treatment, hope that didn't sound insensitive, you'll be off doing fun stuff sooner than you think.

I'll read properly soon but wanted to say - sorry Pennies for the infection (again) and your Dad's response. my dad was always the same when worried about me (I am going back a bit mind, he's been dead a while now), so although it was Not A Very Helpful Email from yours, he's probably very worried. Doctors know more than is good for them sometimes. No excuse I know, but being Dadless myself, I find i can forgive them a lot.

SR - very good luck for tomorrow. It'll be fine, try to relax. and we'll look forward to welcoming you back.

Who asked abuot hot flushes on chemo? Yes I had them, but the tamoxifen is even worse for me!! I spend half my night throwing the duvet off, putting it back on again, throwing it off....

For everyone else - i am waving and wishing you all the best.

Cakes - thanks. Have to say I am tense today! Its is only because of the cannula business - that's what I am not looking forward to. However am going to felxology this morning so hoping that might help me relax and feel good.

Re hot flushes - I am absolutely not an expert as haven't been bothered by these (as yet , with Tamoxifen lurking in the wings) but have you tried the chillow and 'lady care magnets'? People on the BCC site seem to find them helpful.

Will catch up with everyone later in the week. Good luck with treatments.

'Lady care magnets' don't mean to be flippant and I haven't a clue what they are and will probably be desperate to get my hands on them at some point soon, but what a fab name - sounds like something off The Fast Show!

Sandripples, not surprised you're tense, but it'll be done soon. Really good luck tomorrow - maybe that cannula will slip in easily and surprise you. Hope it does.

Pennies, are you home yet??

Hello everyone, hope you had a nice break Cakes and feeling refreshed.

Good luck for tomorrow SR - try not to get too tense, do they use a children's cannula for you? worth asking about, I have them now, and they (usually!) make things a bit easier.

Are you home yet Pennies? hope you are feeling a bit better. As others have said - your Dad was a bit tactless, but its because he's worried. (probably more so because he's a doc.) and because he's not nearby he can't see how you're doing.

I found being lighthearted and making jokes was one of my ways of coping with it all, and its a good release for tension I think. But family might find that hard to deal with.

I've been up since 5.30a.m. as DD had to make an early start to go back to univ.

Does anyone else take sleeping tabs? I'm having problems sleeping at the moment, if I take my sleeping pill (zopiclone) I have weird exhausting dreams, and find it very hard to wake up in the morning. But if I don't take them, I don't sleep at all, I just can't get off. Its a pain.

My sister sounded more cheerful when I phoned yesterday. More like herself.

Hope everyone else is fine. I'm off to google lady care magnets, I think I could do with some.

Home yesterday. Hurrah. Lovely to see the children again, and they've been all over me in their happiness to have me back too. I'm ready for a another break!

Just popping in to say good luck to SR tomorrow. I will be thinking of you.

KK - use Nytol Herbal. I have an excellent night's sleep on them and they don't make me feel groggy in the morning either.

Thank you Pennies, I will give them a try. So glad your DDs have got mummy home now

let me know about the ladycare magnets!! I am loving the name!!

I don't use sleeping tablets though I really do have a lot of trouble getting off to sleep these days. I may well try Nytol (thanks for the tip) I remember DH using them when he was having trouble and he found them a godsend. I bought myself some Horlicks [doddery person emoticon] but have not felt like trying it yet. I think I should, I spend several nights a week bolt upright and with a burning desire to eat chocolate biscuits and drink lemonade (which I always give in to ) And as i am on a diet that is Not Good.

I think this may officially make me a bad (or at least reckless) mother. I have let DD (6.75) loose in the garden with a hammer, breaking up some old bedroom furniture so it is easier to take to the tip. I may come to regret it big time, but it needs doing and she is having a ball

But - bursting with pride - i have to tell you that the man in the furniture shop was so impressed with her manners that he ran out after us and gave her a shiny vanity case complete with lots of bits and pieces for her hair! He said he had met so many horrible children recently he was surprised to meet a nice one - which struck me as pretty but I am still proud as punch of her....

Ah cakes, that's fab - and as far as I'm concerned letting your DD loose with a hammer makes you a great mum - though I may well retract that if you're currently in A&E.

Ah Cakes, that's nice. I approve of letting DCs let off steam in the garden like this!

My teenage DS and a friend did a great job of demolishing a garden fence at my request last year, and then burning it was good too!

Thanks everyone for good wishes. Am washing mouth out with saline this evening to try to defeat a sore ulcer before tomorrow. Also made lasagna today (successful), had reflexology (nice) and made a cake (disaster - it just didn't cook. Put in bin without a tantrum as not worth it) Did a bit too much I think, in effort at distraction. Also had cup of tea in the garden admiring grass I cut yesterday! Will now put feet up for a couple of weeks .

A&E crisis averted! Is now in bed totally shagged out. Yay!!

Sounds a good day, SR, bar the cake disaster. Tomorrow will soon be over and then it is rest, rest, rest all the way. Listen to some nice music, read some good books, and rejoice that the surgery is behind you and you can move on.

Have a peaceful night all - especially my fellow duvet-flappers...

xx

Sounds like DD had a brilliant time wood chopping Cakes - good for her and how nice of the man to give her a present, I'm sure she deserved it.

Will be thinking of you tomorrow SR, it will be good to have it out of the way. Take care xx

Hello

I've spoken to Kurri Kurri on another thread (a few weeks ago) and she told me to come and find you lovely ladies if I had any questions so here I am.

My mum has grade 3 breast cancer. She had a mastectomy and three lymph nodes taken out - in February, two of which proved to be cancerous. Her treatment plan is 3 doses of Fec, then three doses of Doxytocil (possibly not the right spelling!) with Herceptin (which will carry on for a year) then node clearance then radiation.

Her first chemo on April 1st and she developed got huge mouth ulcers on Saturday. She is also more tired than she can describe which is making her very frustrated (this is a woman who treats ironing as a hobby...). She hasn't lost her hair yet, though we have the wig and about 30 scarves ready. She has weird aches in various places and can't sleep (she's been prescribed sleeping tablets but says they make her feel lousy the next day - am going to tell her the Nytol trick).

So, can I ask - will she get these mouth ulcers every time? Will she get some of her energy back before the next dose of chemo (22nd April) and, a bit of an enormous question - do you get different symtoms for each dose of FEC?

Thanks if you made it to the end!

Sarah

Hello NBB, sorry to hear about your mum. It sounds like she is having a rough time. I had similar chemo but didn't get mouth ulcers but as they kept telling me at the hospital everyone is diffrent. My SEs did change a bit throughout the treatment and the fatigue was really bad (sorry to be bearer of bad news). My onc nurse was great though and manged to give me something for most of the SEs. My only advice for your mum would be to get in touch with the onc nurse - don't suffer in silence as they may have something to help her.

Pennies, glad to hear you are home again . Sorry about your dad. Last time I was in hospital in laws were convinced that I had hospitalised myself by doing too much in the garden and got severe telling off for not looking after myself. Trying to explain that I was neutropenic and had an infection made no difference. I have to sneak out to my garden and allotment now when no-one is around - it is the only thing that keeps me sane and like you, I need something to look forward to.

Re cat on head - bit of a problem here. I drift off to sleep and wake up with very hot head and a noise like thunder. Damned cat purrs like a traction engine and if he isn't purring he is snoring. What with DH too, I have stereo snoring.

thanks for all the tips on hot flushes - chillow had been ordered and is on its way. Tablets from GP have really helped too.

NBB - Hi, sorry about your Mum.

As Haggis said, everyone is different and every cycle is a bit different which doesn't help to answer your questions, but, in my experience, there are things that you do seem to be prone to each time, while others pass you by.

The aches and pains and fatigue are pretty par for the course unfortunately, the mouth ulcers - well, I didn't suffer there. Did they give her Difflam mouthwash to use? It is good but I fouond it a bit harsh. Best trick for me was to mix up a large jug of water, stir in half a teaspoon of salt, and rinse out the mouth five or six times a day. That worked for me, I rarely needed the Difflam - only on one cycle after I had been neutropenic with swine flu and was therefore very low generally.

This all relates to my treatment with FEC, I am afraid I don't know anything about the other one.

As Haggis said - the oncology breast care nurse should be able to help with much of this - it really is important not to struggle on manfully alone, they can help with most things. (Though not really the tiredness unfortunately). She should get a bit more lively before the next cycle though - I certainly hope so. And good on you for being such a support!

Sorry, what I meant was, you use the salt mouthwash to protect against mouth ulcers, so you start using it on the day of your chemo treatment and keep using it daily for a week or so, and - at least for me - it stopped problems with my mouth from developing in the first place. She may already be doing this (it was in a leaflet I had from the hospital) but it is my only tip. I may just have been fortunate!

Thanks Haggis/Cakes - she hasn't met anyone else who has been through chemo so it's good to hear that she is "normal" and to get an idea of what's ahead.

She's was told to use a mouthwash from day 1 which she did - but they came anyway. However, we did discover that the grandchildren's teething rememdy (Anbesol) works wonders on numbing the ulcer.

Will mention Difflam and salt water for next session of chemo

Keep going!

Sarah

hello NBB - so sorry your mum is having a hard time. The mouth ulcers are horrible - but if its any comfort, I had a really horrendous outbreak after one cycle, but only a couple of little ones after that. I was prescribed adcortyl in orabase (I think you can get it off OTC though)and also to use a disprin mouthwash as preventative and treatment. - Two soluble disprin in half a glass of water washed round your mouth 4 times a day. (don't swallow, so doesn't effect what other painkillers you take.) I'd also advise phoning her GP - they can prescribe and advise her over the phone. Hope she gets some relief soon.

I tended to find difflam numbs but doesn't heal(but keep going with it - my policy was throw everything at them).

With regard to Side effects - I was on slightly diff. drugs to your mum, but I would guess they all have similar effects. I found it fluctuated a bit - sometimes one thing (e.g. ulcers) really bothered me, sometimes another. And changing drug halfway through brought different issues to the fore.

I wish her, and you,all the very best. As others have said the main thing is to tell the nurses, oncologists etc. There are things to alleviate most SE, so she doesn't feel quite so lousy

Loving the Cat-hat Haggis - my dog is a terrible snorer, makes the sofa vibrate!, hope the chillow is a success.

Fingers crossed for SR today. And hope you are feeling a bit stronger Pennies.

Haggis - In honour of your cat from 1:23 onwards

Hello all.

NBB - sorry to hear aout your mum. Mouth ulcers can be a very common SE - I've had them minorly, my problem is throat ulcers (warding one off as I type). From my experience you get different SE with each round. THere's no predicting what will happen each time. She should keep a diary of what's going on and tell her oncology team if at any point she find sit too much.

Just wondering in to see if there's any news from SR - is she expected to be in overnight?