starting epirubicin/CMF on 18th July

[Guest user]

I am up today = but crying all the time. oh to be normal

take care
gill

[Guest user]

Sorry Gill. It's awful isn't it? Just batten down the hatches. It'll be worth it in the end.

Mal x

[Guest user]

glad your fog is clearing - mine is decending.

have a good weekend

gill

[Guest user]

Good luck for tomorrow Gillian. Hope you've had a couple of 'good' days. Let us know how you get on.

Hope you're coping OK after your 3rd Gill.

I've come out of the fog a little now and have been in work for the morning which did me a power of good. Have got a lovely week-end planned before my 4th and final Epi next Friday.

Chins up girls.

Mal x

[Guest user]

Glad you're out & about today. Also glad you've got a wig you're comfortable with. It certainly makes a huge difference to me. Shaved the last hairs this morning. Fed up of being patchy.

Hope you're out & about too Gillian and not stuck in bed.

I'm going into work for a couple of hours tomorrow. Hopefully it will drag me out of this well of self-pity I'm drowning in.

Anyone else feeling sorry for themselves?

Mal x

[Guest user]

Hi all,

starting to feel uck, nut not too bad. going for last shop before expecting to be too tired tomorrow.

I have wig I am happy to wear!!

My son said he forgot I didn't have hair when he saw me this morning.

I might give it a og.

Hope you recover some enery Gillian - I was feeling so good on Monday I was dreading this one.

Anyway it is all in a good cause!!!

Take care, go well

gill

Take care all.

[Guest user]

Gillian - I know what you mean about being permanently tired. I was dreading my 3rd but I do seem to be coming round a bit quicker than with no 2 (if that's any consolation). The 2nd was awful. Today I've actually had a walk! Even though I couldn't walk a straight line. It does get you down though doesn't it? Just want to feel normal again (whatever that is). It would be nice to have something to look forward to but haven't got the energy to do anything.

Gill - take it easy.

Tomorrow's another day. One day nearer the end of treatment.

Mal x

[Guest user]

Hi Girls,
my next is on Friday and I am getting a bit worried as feel so lousy at the mo, just permanently tired, slept all day yesterday, and all night last night and could do with going back there now. Won't be able to stand this if it continues though next cycle!
Hope you're OK Gill after the last one and Mal-hope you have rallied a little?
speak soon
Gill

[Guest user]

OMG - chemo brain again! It's Tuesday! Sorry Gill.

Hope you're OK.

Mal

[Guest user]

been and done it -
gill

[Guest user]

Hi girls

Have been in bed for the past 2 days but am feeling a little better this morning.

Hope you both enjoyed your long week-ends and made the most of it.

Good luck for tomorrow Gill. It's just a matter of battening down the hatches for a few days isn't it until we come round. Do hope you don't go back into the black hole again. Did you manage to do the car boot? The weather here has been lousy all week-end.

Your next one on Friday isn't it Gillian. Hope your headache's gone and maybe you've got a date for the scan. Have you got your wedding arranged yet?

Take it easy

Mal x

[Guest user]

Spoke too soon. Bed all afternoon, up a couple of hours and I'm off there again now.

Hope you enjoyed your days.

Mal x

[Guest user]

Hi Mal,
no I don't see the onc at Chemo. I saw the registrar when I went in between, when I had a problem. He is veery good and it waas nice to see a different paerson who explained things a bit differently.

yes I think I stay on Epi if if is doing the trick. At least I know this one.

Having only 2 weeks between must be hard. I enjoy my third week - which makes the thought of another treatment awful, but at least I recover a bit. I think that is why they do it 3 weekly if it is 6 treatments.

It is raining - we were supposed to be doing a boot sale today - but may do it tomorrow if fine. Family for lunch today as we are here.

Hope your dogs settle down! I wonder if they will sleep at night?

gill

[Guest user]

Just out of curiosity, do you see your onc every time you go for chemo? I do and I find it very reassuring. He has a little chat and asks me about side effects and if I'm worried about anything etc.

Gill - Will they keep you on the Epi if it's working? I wouldn't envy you another 3 but if it's working and shrinking the b.....s then it'll be worth it. I bet you'll be glad to get the next couple of weeks out of the way. However hard you try not to worry it's keeps creeping back in.

I must say (and I'm hope I'm not tempting providence) I feel so much better than I did day 2 after either of my previous chemos. Really hope you're the same. I don't know about you but I could do with a bit of quality time. With my cycle only being 2 weeks I only get about 3/4 decent days.

When I was opening my steroids this morning I dropped them all over the floor and before I could pick them all up, the dogs had eaten half of them. So I've got hyper dogs and fewer for me tomorrow.

Hope you've got something nice planned for tomorrow.

Mal x

[Guest user]

hi Mal,
my scan is in 2 weeks on the Monday and I see the onc on the Friday and decide whether I continue on the following Monday or change. so quite an exciting few days :- /

20 years sounds good to me - you never know?
gill - in Sussex

[Guest user]

Hi from sunny Manchester

Well day 2. After an awful night (sick 4 times, watched 3 films between 2 am & 5.30 then pegged my washing out at 6.00) feeling much better today than I did on day 2 last time. Just hope it lasts. Only one more of these for me. That's the only way to look at it.

Gillian - Glad someone is finally listening to you about your headaches. I'm sure it'll be down to stress but I know that's also not very reassuring at the moment. Just hope that they can organise the scan fairly quickly.

Gill - so glad that you're not suffering any symptoms from the mets. There's a woman on BC Mets forum who's been posting for over 20 years! Is your scan on Tuesday or later? You'll feel better once that's out of the way I'm sure.

Enjoy the sun and your week-ends.

Mal x

[Guest user]

Mal,
No I have no symptom from my Liver and it is functioning normally. I have symptoms at all exepct a cough from the aggravation to my Pleura. I am grateful for it though because otherwise I would not know about the bones and liver! Strange what you can be grateful for !?

Gillian, glad they have taken your headache seriously at last - I am sure it could be stress - just a bit! If you grind your teeth at night go to your dentist and get a night guard, which should help.

no 3 on Tuesday and then Ultra Sound Scan and then decide whether I continue for 3 more or change to something else.

hope the sun keeps shining on us all!

gill

[Guest user]

well done Mal, hope it goes not too badly for you!

Loke the rest of you I think I was more tired with the last one, which took about 10 days before I felt right again, if itcarries on like that I will be bad all the time by No 4! Let's hope not.

Eventually got someone to take my headaches seriously and they have confirmed I'm OK to take Aspirin and are going to send me for a head scan soon, "just to be sure it's not something serious" I will try not to worry. Beginning to wonder if it's a stress thing and I am maybe grinding my teeth or something?

Good luck on Tuesday Gill, just one more after that?
Love to all on this bright summer's day!!!!
Gillian

[Guest user]

Hi all

3rd Epi over and done - OK so far. Stomach a little delicate, tired and spaced out. Nothing new. Got some new med for the mouth. Hope they work.

Forgot to ask you if you've lost the rest of your hair. I shaved mine over 10 days ago (no 4) and woke this morning pie-bald! The back of my head completely bald and the sides about 90 % gone. I look like a coconut with spiky hair on top. Will have to get round to having a proper shave.

Hope you're OK. Getting ready for next week? Gill Tuesday and Gillian Friday.

Gill - I hope you don't mind me asking - did you have any symptoms of your liver mets? I don't know whether you read my post last week-end about nodules being found on my liver and adrenal gland, I'm not worrying as such!

Gillian - how's your headache? Clear I hope.

Have good week-ends.

Mal x

[Guest user]

Chemo brain!! It's no 3 I have Friday not 2. Only one more then.

No Gillian, I'm sure there must be something they can give you for your headache. Hopefully it eases so you get a clear week before the next. Sure you've not been on Gordons again!

Gill - know what you mean about the tiredness. Went into work today but after 3 hours I hit the brick wall and had to come home.

Went to the GP about my bad shoulder and it's tendonitis. Says I need a steroid injection but he won't do it til I've finished chemo. Never mind it's the least of my problems.

Let you know how no 3 goes.

Mal x

[Guest user]

well done Mal - yes 3rd Epi on Tuesday.

feeling ok at the mo, get tired easier than normal but not too bad.

Gillian, you should not have to put up with a permanent headache - my GP said there must be something you can take - but she would not commit as to which of Paracetamol or Ibuprofen you should take.

not looking forward to spoiling things on Tuesday but it is a step further forward - I hope!

hope you keep well

gill

[Guest user]

Hi there,
I have my next, next Friday...yuk, at least it's another one under the belt!

It's taken me a while to get over the last one, only beginning to feel normal now really.

I still have this permanent headache which no-one seems to be bothered about. I am going to persist with the BCN tomorrow and get to see someone soon.

I hope it goes OK on Friday Mal...or at least as well as it can.

See you on the other side, take care ladies
Gillian

[Guest user]

How we doing girls?

Hopefully you're having good weeks and are busy out and about.

I've got the 2rd Epi on Friday and am dreading it. I've felt so awful this last time.

If my memory serves me right Gill, you have no 3 next week. Is that right?

Take care

Mal x

[Guest user]

Hi girls

Hope you're both OK and enjoying your week-ends.

Mal x

[Guest user]

I can sympathise over the taste thing. I've had it too - but it's going now (thank goodness). Nothing, and I mean nothing, tasted good. The things I found better than others were all tomato based with a little spice added. Even booze tasted awful. I might risk a couple tonight tho'.

Yep, halfway through. Can't wait for 5 Sept and get no 4 out of the way.

My new wig arrived this afternoon (ordered online) and I love it! So comfortable and it feels like real hair. Worth every penny of £80. Might go to the BBQ in Harrogate on Saturday after all.

Go easy on the cointreau.

Take it easy

Mal x

[Guest user]

Just think tho Mal, you are half way through now aren't you?
Glad the sun is shining on you....Gill, Jen and all others too I hope
Off to try gargleing with cointreau...something must make my mouth taste better?
Gillian

[Guest user]

Hi Girls

Well, the sun's shining and I feel good today. Yipeeeeeeee

I've been in work for a few hours and enjoyed having my 'normal' life back for that time. I even went in wearing my wig and got so many compliments. That made me feel a whole lot better.

Forecast tomorrow is good, so a ride out into the country with a pub lunch is on the cards.

Gillian - I must say I feel remarkably good hairless but wouldn't dare to go out like that. You seem to be getting out and about a lot. Good for you. I'm going to make sure I do the same this next week.

My 3rd Epi a week tomorrow and I'm dreading it. It's hit me so much more this time and I know it'll probably be worse again. Never mind a whole week feeling OK. Hope yu're feeling better after your down day and glad your headache is alright now.

Gill - hope you're out and about too and feeling OK.

Take care

Mal x

[Guest user]

Hi ladies,

Had my predicted "down day" today so came home from work early and went to bed. I seem to have couple of nights after the steroids have worn off where I sleep reaaly badly and have crazy nightmares!

Mouth is crappy and can't find anything I want to drink etc.

Good on you Mal with the shaving!!! I find a long thin scarf wound rouns turban style seems to be best for me, the headscarves look too flat on what I have decided is a nasty shaped head...honestly the things you can get hung up about!! Frequent bouts of turban rage in the mornings tho as i try to get somehting that does not look like an extra from Aladdin.

I am going out plenty (Edinburgh festival in full swing) and just find that I am keepingmy eyes down and not meeting peoples looks too well, I intend to work on this and hold my head up high by next week.

The head is MUCH better due to aspirin but I should really check that it's OK to take....spose.

Love to you ladies battling away, stay strong
Gillian

[Guest user]

Hi Gill

You're right it is just a waiting game. Actually walked to the local shops today. First time out since the chemo. Hopefully coming round now. Must stop feeling so sorry for myself.

Hope you're OK Gillian.

Shaved the head tonight! Feels much better. Will have to try out the scarves and wigs. I know what you mean about the falseness of a wig, but I couldn't go to work in a scarf. I did buy a turban too, but again it's not really me. Whatever! I'll have to makedo.

Now you're surfacing from the chemo fog, what plans have you got for the week-end? Quiet or wild?

Take care

Mal x

[Guest user]

Hi Mal,

hope you are ok. it is just a waiting game until you come out to play again.

I have told everyone I am not going to speak to anyone from day 3 to 7 and I will sleep or whatever.

Been out alone this morning!!

I can't do the wig - but I am enjoying scarves and hats - got 2 hats this morning. either is more comfortable and you can make it 'you'. I think it is the falseness of the wig - too much hair when we get used to our heads. he he!

having said that I have seen women at chemo with nice wigs and they are happy - so what ever suits. I wish I had not wasted the money though, even if I did get a sub.

How's the head Gillian?

gill

[Guest user]

Hi girls

Glad you're back in the land of the living Gill. Your bee sting without the sting sounds strange. Keep us posted. I suppose we'll just be learning the pattern of side effects and how to cope with them when it's all over. I've still not been out yet since my chemo. Have been glued to the sofa. Certainly feel worse this time round. In future I'll just write off the first few days. No sore throat yet just the woolly mouth and taste loss.

Strange about the aspirin. My onc told me not to touch it but didn't mention paracetamol. Hope you have got rid of your headache Gillian.

My hair is coming out thick and fast. Will have to get clippers out soon, but can't face it without a drink, and I can't face a drink yet. Supposed to be going to a BBQ on Saturday but if the hair's gone I'm not sure. Have ordered another wig. Unless I find one I feel comfortable in I'll become a recluse.

Have you girls worn your wigs out yet?

Mal x

[Guest user]

Hi everyone,
I am much better today. I am gong to quarantine myself next time, it will be easier on the world!

I have been out in the sun, when it was there this weekend and I managed a visit from my very worried parents.
I have been shopping today. that has finished me, am going to bed.
The mouth is starting to get sore - It did last time- so I can cope with that.

I have a strange pain on my chest - not associated with anything, like a be sting without the sting. I phoned Chemo and they said go to GP - she won't let me go to surgery (where all the germs are) so she is going to visit me tomorrow.

I read on another thread that we should take Ibuprofen and not Paracetamol(cos it lowers temperature), didn't mention Aspirin. If you get a headache then the chemo team should advise you Gillian - to the weather.

Take care all - I like the sock idea for the earrings!

gill

[Guest user]

Hi tara,
I got no help from either chemo nurse, BCC nurse, local GP or physiotherapist. Got suggestions like "maybe it's the weather, maybe you need your eyes testing, and maybe it will go in a couple of days" Got conflicting advise re pain-releif so have plumped for aspirin every 4 hours, as it seems to be the only thing that helps, do you think it will be OK to continue till next app't?
Thanks for you attention
Best wishes
Gillian

[Guest user]

Hello curtainqueen,
It isn't unusual for people having chemotherapy to experience a
headache, both during and shortly after having treatment.
However it sounds from your post that you have been experiencing the
headache for a while now, if it is ongoing I would suggest calling your
chemo team to talk through with them the pain relief they would
recommend.

If the headache has gone now, I would suggest speaking with your chemo
nurse and / or oncologist at your next appointment and letting them know
how long the headache lasted for and how severe it was.

BW's
Tara
Clinical Nurse specialist

[Guest user]

Hi there Jen

You're not butting in - welcome. It's great to hear from people who've come out the other side (so to speak).

I'll be on Xeloda too after Epi and am wondering how you found it? Easier then Epi? And, did your hair grow back? Can't believe that you never lost your leg hair! Like you say - so unfair. So I'll look like a bald monkey will I?

Gill - so hoping you're feeling better and getting out in the fresh air a bit.

And Gillian - hope your headache's gone now.

I'm feeling better this morning. Just the spaced out feeling and a furry mouth.

Going for a walk now.

Take care

Mal x

[Guest user]

please excuse me for butting in - i finished chemo about 4 weeks back... i did 4 epis and 4 xeloda on three weeklt cycles....doing rads now and tamoxifen

i just wanted to say you seem to be doing well and the lines seem to help - u make a nice group!

my leg hair NEVER WENT...hah you do chemo and lose all ahir except legs?????? how blooming unfair is that!

once u stop epi it should grow back... i keep looking at my legs wondering if i will wake up with a whole body covered in hair.... like twining round me.... just because it was there when nothing else was!!!

my best wishes to u all -and queenie (or shd i say quine? ) bring the wee lasses to the pub....am laughing
take care jen xx

[Guest user]

Well Gillian, you seem to be sailing through this. Lucky you.

I had a really bad headache for a couple of days last time but my Onc told me not to take aspirin.

My sickness has passed now thank goodness. Just feeling spaced out. Holding my breath to see if the sore throat etc kicks in as last time. Not been out of the house all week-end.

Determined to go out tomorrow and get a little exercise if the rain stops long enough.

Hope you're coming round now too Gill

Take care

Mal x

[Guest user]

I feel pretty much on this epi as before so far, except no indijestion as we got that sorted last time round.

Just tired, what is it with this stuff that makes you want to busy yourself organising the house? Spend 3 hours this morning getting all my jewellry into order, used an old pair of holey woolen sock so hang my earings on, looks weird but does the job.

Hopr you lot feel better soon...really do...god knows we have enough to cope with without that> I had had a serious headache since 1 hour past 1st epi which no-one gave me any help with, aspirin seem to be OK but has anyone else had this?

Been out with a friend who has had a really tough time recently but we managed to have a few laughs anyway.

knackered now so going to make tea and hoof it to bed pronto

see you soon ladies
Gillian

[Guest user]

Hi Girls

So glad you're coming out of the tunnel Gill. As you say, you're in a different position to us and it's to be hoped that the Epi is doing its work on the liver.

I must admit that no 2 has hit me harder and I've not wanted to see anyone this week-end. Sent my husband out this afternoon as I'm better off on my own. Not much company.

Anyway, must stop feeling sorry for myself. Tomorrow is another day. Might wake up tomorrow and feel like cleaning the house from top to bottom. (It needs it) Could do with a bit of fresh air but the weather is foul. Raining hard for 2 days now.

Hope you're Ok Gillian and enjoying your week-end.

Chin up girls

Mal x

[Guest user]

Hi, nearly back in the land of the living.

I have just slept and slept. so depressed and miserable. don't want to see anyone. my poor husband.

I am a bit different to you you two Gillian and Mal. I have secondaries. I think I am aimed at 6 Epis - but there will be a review at 3 to see if it has done any good to my Liver. If not a change.

I am not sick, for which I am grateful, I just get very down from day2.
I think I should just write off those days and stop trying to be brave,

Mouth will start next, but that is preferable to depression.

My hair went on day 14 - head felt odd on day 13 and out it came. I had it clippered to no 7 as I was on my way home from a weekend away - great timing. I put a scarf on.
I still have a very very thin bit of grey - I expect it to go on day 14 of this round -?

Julia, I will have to have the wig trimmed - it is TOO MUCH hair now. I got used to the bald look very quickly and my husband and sons seem to thing it is ok. Cold though. Need more sun.!! My mum would prefer that I wore the wig - but I just don't.

Any way stop being a misery, woman.

Hope your weeks go ok and you get through the first bit fairly well.

gill

[Guest user]

Gill - just noticed that you may only have one more Epi depending on the results of your scan. Let's hope the blighters have been xxxxxxx

Mal x

[Guest user]

Hi girls

I hope you're on the right side now Gill and are out and about this week-end.

The 2nd Epi has hit me straight away. Up sick in the night a couple of times and although not sick today yet feels as though it will be any moment. Feeling very yucky. Mouth sores have started already and I'm feeling very sorry for myself. Just got up. Been in bed all afternoon. Hopefully better tomorrow.

How are you Gillian. Worse or better than no 1? It was good news about your test results. The waiting, as you say, is the worst. Your head's all over the place. But I've decided not to dwell on it too much as I won't know anything for a few months. (Head in the sand syndrome!)

Well Girls - we're all half way through the Epi now and I don't know about you but will be allowing myself a little celebration after no 4. I can't remember what you girls have got to follow but I've got 4 cycles of Xeloda (tablets) which although still have different side effects I will be looking forward to no more IV treament.

Really hope you're having a brill week-end girls - despite the constant rain.

Take care

Mal x

[Guest user]

HI all,
hope you are better Gill????
I had a couple of scares at the beginning when they sent me for liver, hip and heart scans as they thought there was something wrong! Very worrying fortnight while I waited, but they turned out to be "nothing", what concerned them I still don't know, think they just absorbed more of the dye than other bits, but not necesserily anything naughty.
So hopefully yours will be the same Mal. I am glad they go the extra mile to be safe rather than sorry but it is a worrying time while you find out...so best of luck anyway doll.
2nd Epi went better than the first, nurse was a bit gentler and slower. So just abit zonked as I barely slept last night.
Tried to nap but the steroids are keeping ,me going, early night methinks
Love to all you strong and lovely ladies, have a great weekend
Gillian

[Guest user]

Hi all

Thanks for the tip Julia. Might ask my hairdresser to have a go at the wig.

Woke up with a sore scalp today and a few stragglers, so don't think it'll be long. Like you Gillian, I'll shave it off before it comes out in handfuls.

Had my 2nd Epi this morning. Ok just a bit spaced out at the moment. Finished chemo at 11.45 but had to wait until 1.30 for the meds. The pharmacy is sooooo slow. I'd left the prescription before chemo at 10.30.

Good news and ??? news from the result of my CT scan. He said 'nothing to worry about. Not showing anything in my shoulder and arm. But some people have sort of skin tags and I have 2 nodules showing, 1 on my liver and 1 on my adrenal gland.' He didn't think they were anything but couldn't rule it out. Will have another CT scan after I've finished chemo.

Not going to freak out until I need to.

Gill - hope you're feeling better today. Let us know.

Have a good week-end ladies.

Mal x

[Guest user]

Hi All; Re wigs - take them to your hairdressers - some of them need to have about 40% of the hair removed so that it lies like hair and not make you look like a clown. If they ride up they were probably too small to fit you. I had one from the NHS and one I bought from US website - both are Raquel Welch ones and look and move like hair - still make you hot and can't wait to take the b****y thing off.

Good luck to all this weekend.

Julia

[Guest user]

Hi Mal,
second epi today and dreading the needle more than the drug I think! Drinking loadfs of water and eating as much as possible.
Hair started to hurt on about day 12/13 and on the Friday I could pull little bits away so decided to go for the close shave..glad I did it but really don't like the look.
Had a bath last night and it looked like I had shaved my entire body after the water drained! So right decision I think...I would have flipped out if they had ben long hairs I think
Love to all and best wishes
Speak soon
Gillian

[Guest user]

Hi Gill - sorry it's not one of your better days. Things can only get better. Just sleep it off. Hopefully no sickness - that's the worst. Is it following the same pattern as after no 1?

The CT scan is used as a baseline and it's automatic here. Everyone has them. However I have been having problems with my shoulder/arm (my good one) for a few months now, and am waiting for a bone scan. If there is a problem with my shoulder I assume something will be picked up from the CT scan.

I'm a bit twitchy again tonight. Were you the same before your 2nd?

When did your hair start departing? It's 2 weeks now since my 1st Epi and there's no sign of it going yet.

Gillian is having her 2nd tomorrow too. Good Luck.

Take it easy

Mal x

[Guest user]

remind me what are you looking for on your Ct Scan?

I am yck to today - will be better tomorrow

taking it steady - in a good cause we hope, don't we?

oh shut up woman

hope you are ok tomorrow

gill

[Guest user]

Gill

So glad you're OK, just make sure you don't overdo this time round.

Hopefully I'll get the results on Friday when I go for the next Epi. Fingers crossed they're alright.

Take it easy.

Mal x

[Guest user]

When will you know the result Mal?

I am ok ish. been into town this morning - saw a few people I have not seem for a while cos I was working - so that was nice. may be a sleep after lunch?

let us know

gill