starting epirubicin/CMF on 18th July

[jackiek55]

Hi everyone

Still feeling fine but waiting for the SEs to kick in. Hopefully not!

I pick my wig up some time next week so perhaps I will get to used to it when the time comes.

It definitely looks as though we're in for quite a good weekend, so hope you all feel well enough to enjoy it. A bit of sunshine does us all good.

Jackie x

[Guest user]

Hi all

How I envy you Gill (even though it's not all pleasure). It's years since I've been to Devon and love it there. Enjoy yourselves.

As for work I've been managing 4 to 5 hours a day (then need to go to bed for an hour) for the past month but this week is the first week I've managed to work 5 days. I have so enjoyed having some normality back in my life. Have my CT scan on Monday and not looking forward to the results!!

Jackie - I have a wig that I absolutely love and feel very glamorous in it. I think I would have become a recluse if I didn't feel comfortable in the wig. I know both Gill and Gillian would rather wear scarves, hats etc and I think they're really brave.Each to their own.

Hope you're still OK Gillian.

Enjoy the week-end and make the most of the weather.

Mal x

[Guest user]

Hi - I went to work yesterday - last one for now, nothing else booked.
It was good to be in the world again.

I am going to Devon this weekend and for a few days. part pleasure and to bry my mother in law's ashes - overdue - due to waiting until I could go. another job done.

We will stay with my husband's cousin, which is always good.

Might visit the Eden Project -?

then back on Thurs in time for District Nurse on Fri and bloods, ready for chemo on Monday! off we go again.

Jackie - I wear scarves and hats - it is cold without anything - for me. I find that people don't see me when I am out, you don't realise how much you recognise someone by their hair.

What are you all up to?

gill

[jackiek55]

Thanks for your kind welcomes. It's good to have so much support.

I'm not looking forward to losing my H but have already been and ordered a wig and had my hair cut fairly short, so am preparing myself for it. I've also bought a couple of scarves and hats, but I'm not used to wearing anything on my head. Perhaps I'll just decide to go commando. My OH just hopes that I will keep my eyebrows as they are a definite feature.

Great to hear that the pills are working for you Mal.

Take care everyone

Jackie

[Guest user]

Hi girls

As everyone says Jackie - it's not pleasant but is doable. Welcome to the rollercoaster!

Would you believe it girls - I've got stubble on my legs! Nothing on my head just my legs! (Thought it was growing on my head but OH says I must have a problem with my eyes). I never lost my eyebrows or lashes nor my nasal hair.

The pills from hospital seem to be doing the trick. Thank goodness. No problems.

Where are you going for your next breaks girls? Anything planned?

Mal x

[Guest user]

Good for you jackie, hope it continues to go OK. You are bound to have a few rough days, so just go with the flow if you do?
Best of luck with it all
Gillian

[Guest user]

hope you continue well

let us know

[jackiek55]

Hi everyone I had my first epi on Monday. I am on the Tact 2 trial arm 2 so will be having epi every two weeks for four cycles and then on to the slow road of cmf for four double cycles. I have been reading all your posts since I found out that I would be having chemo and quite a few have made me smile. It's good to know that there is always support for everyone on here.

So far so good. I know its only day three but I seem to have been very lucky with the side effects so far.

Hope you are all doing well and I will keep you posted with my progress.
Jackie

[Guest user]

I can;t stop picking mine, it's so intriguing!
I go onto CMF next so have.t even looked into that and the side effects , tho I think it's meant to be easier.
Glad we're all OKish!
See Yous
Gillian

[Guest user]

Oh and I have no nose hair now -- so a drippy nose!!

[Guest user]

hi you both - I am fine today - in a courtious sort of way. sat in my son's house for the electricity man this morning - nice to be usful! and went out and bough the tea this afternoon - and 2 jumpers, I am so cold.

Sorry to hear abou the sickness, Mal. It is weired when you think you have - even bad thing sorted- then things change.

I much prefer (the right word?) physical pain to the mental.

I had an ultra sound scan to see what the Epi was doing to my Liver, Gillian. It had stopped any growth (not that we knew how quickly it was growing) and my cough was a little better. He said that Docetaxal will do more - ie shrink the Liver mets. My cough is all but gone this week.

1 more til I see him again and 1 more then to have another scan. Oh I hope that is it then, but I will do whatever.

take care both - go well
gill

[Guest user]

Good to have you back Gillian and to hear your news. Skye sounds great. Glad you've finally solved your headache problem. Something so simple too. 'Screwed up head' - yeah - don't miss that! What's your next chemo?

I've been waiting for side effects to kick in on the tablets and they did last night. Up sick four times. Pills sorted it this morning just feel a little delicate BUT no 'screwed up head'. It's a bit weird starting a different chemo 'cos you don't know what to expect.

Hope you're still feeling good Gill.

And thanks for the congratulations both of you. A new baby was just what the doctor ordered. Cheered me up no end. Got a family celebration get-together this Saturday which will be good.

Take it easy

Mal x

[Guest user]

HI ladies,
yes last epi done now! Hoobloominra!
So many congrats on the new baby, such lovely news!
So it's not just me with the screwed up head then? I seem to have sorted the headache problem tho...by sleeping with no pillows...been trying every combination of thingsbut had 2 days without bad head (after 9 weeks continuous)
Had a lovely time in Skye, it was so nice to see some hills and catch the breeze a bit, couldn't walk too far but did get to a coral beach which was great.
Got lost of threads to catch up on as havent't been around for a bit.
What did the onc mean by the epi not doing enough? How do they know..
I hope you are both well and enjoying the weather
love to all.....gillian

[Guest user]

Nice to hear from you Gill and that you've surfaced from the 'grey puddle'. Like you I found the hardest thing with epi was the way it messed with your head.

You're brave travelling to London on the train but it sounds as though it was worth it. What a lovely day for you.

So far so good with my tablets but we'll see. I've only been on them for a couple of days.

Saw my new grandson this afternoon and he's a real chubby chops. Really cute (not that I'm biased).

Gillian - hope you're OK after your last epi.

Take care

Mal x

[Guest user]

CONGRATULATIONS ON THE BIRTH OF LUCAS!!!!!

Hope your new drug is gentle with you.

I feel like I have had flu for a week - it was only 3 days. I spoke too soon - but at least this pain was mostly physical. I have not had the black hole this time, just a bit of a grey puddle.

I managed to go to London on Saturday to see my son dance in a Garden Party. the weather was perfect, very english summer! I went train taxi seat taxi train home bed. but is was worth it - can't stand to miss anything!

take care all

gill

[Guest user]

Hi girls

Well started the Xeloda tablets and so far absolutely nothing! Hope it lasts. Hope you're both OK and coping after your chemos.

I have another grandson, Lucas, born 11.30 last night. 9 lbs and loads of black hair. Can't wait to see him but will wait until they're out of hospital tomorrow.

Can't cope with this warm sunshine - not used to it.

Take care

Mal x

[Guest user]

Hi all

Hope you're still coping OK after the tax Gill. Let us know. Are the side effects different to Epi?

And Gillian, hope you enjoyed your break being waited on and that the weather was glorious for you. 4th Epi today? Hope it's gone OK.

I've been to Christies this morning and got the Xeloda tablets which I start in the morning. 2 weeks of tablets and then a week off. The onc said that it's different in that as it's cumulative.you feel at your worst during the week off. So we will see.

Take it easy

Mal x

[Guest user]

Thank goodness for that Gill.

Hoping you tolerate it well (better than Epi).

I'm back on Friday for Xeloda and hoping that I find it a breeze.

Take care

Mal x

[Guest user]

It went ok took longer but all well so far

gill

[Guest user]

Gill - hope you're Ok. Thinking about you and wishing you luck for tomorrow.

Let us know how you get on.

Mal x

[Guest user]

Gill - just wondered how you're doing. All prepared for Tuesday? I saw your new thread and the replies. Al least you have an idea what to expect. A lot of ladies have very good results on the tax. How many cycles will you have before they scan you again? Let us know how you get on. I change to Xeloda on Friday so am waiting to see what side effects kick in with that.

Gillian - have a lovely break this week.

Have been to the caravan this week-end and the weather was glorious. Normally we'd put on our walking boots, pack the rucksack and we'd be off but I don't know about you girls but I can't really walk far at the moment. It was nice to get away though.

Hope you've made the most of the weather.

Mal x

[Guest user]

Gill - that's a bummer (to put it mildly)!

'Doesn't think the epi is doing enough'? He must think that Tax will have more effect. I know from what I've read that Tax is the gold standard for secondaries but has very different side effects from Epi. Just when you've got used to it and know what to expect.

You're treated at Brighton aren't you? Have you thought about a referral to the Marsden?

Will be thinking about you.

Off to caravan now. Will be online again Sunday.

Try to have a good week-end.

Mal x

[Guest user]

onc says have to change to Docetaxel (Taxotere) as he does not tink the Epi is doing enough.

Chemo appt changed from Monday to Tuesday.

gill

[Guest user]

thanks Mal - I'll let you know.

hope you are feeling ok.

gill

[Guest user]

Gill - Good luck for tomorrow. I'll have fingers and everything else crossed. Let us know how you get on.

Gillian - have a brilliant time in Skye.

Mal x

[Guest user]

Gill - good news on your scan. So Epi is getting the b*****s! Brill. Fingers crossed for Friday. At least you know you're not putting up with this for nothing now. Are you going to see your onc about the laser treatment? Is that on the NHS or private? I was reading about Cyberknife on the net. Is it the same thing?

You are sounding much better Gillian. Make the most of it.

Take it easy girls

Mal x

[Guest user]

Glad you are feeling good Gillian - enjoy you holiday - will be thinking of you on Monday!

I had my scan yesterday and the lady doing it was very helpful. She said that - just from her eye - one lesion was noticeably smaller and the other 2 might be but were not bigger. So some success! She will do a detailed measurement and report for friday. So i t looks like 3 more of the same. Or maybe the onc will do something different -? I am not SO worried now anyway.

I am still going to pursue the laser treatment option - I maybe have not mentioned this on this thread before, maybe only on the Secondarys thread I am in.

Have a good time at the caravan Mal.

go well
gill

[Guest user]

Hi all,
I must admit that though work was really the biggest part of my life while I tried to get the business off the ground, I really want to live a little more now. So the odd weekend away whenever we can from now on.
Maybe we should all set up some kind of house swap for baldies?
I'm feeling so much better this time round, I'm so releived! After No 2 I was beginning to wonder if I would be sick till Christmas!
Take care of yourselves ladies
Gillian
xxxxxxxxxxxxxxxxxxxxxxxxx

[Guest user]

Hi girls

How did your scan go Gill? I know they don't tell you anything. I'm still waiting for my appointment. The sooner the better - although I'm not sure what the result will be.

Madeira in Feb isn't it? Brilliant. A bit of warm sun on your back. I could do with some of that NOW. Think we're going to the caravan this week-end (all being well) for a change but feel guilty leaving Mum. She's hobbling round on crutches at the moment after her fall last week.

Good idea to have a few short breaks. Will have to book a few days in a nice hotel for October half-term.

Bet you're really looking forward to Skye Gillian. Your results should be thro' soon?

Take care

Mal x

[Guest user]

glad you are feeling ok - hope you day was good.
I got my son back to his flat and sorted - well he dos it himself we are just the transport of heavy goods!
Hope my no 4 is not so bad then - if that is what I have next week.

After our little trip away we decided that we could do that more often - any where within about 2 hours and stay the night. there are lots of places we say we would like to go - just to see what it is like - well we are going to see them.

Good idea to retire early - evenif youhave to sell the Spanish house - you can still go on holiday - those long winter ones which are cheaper and no responsibility for a property.
Now there is an idea - long winter holidays!

We have a week with friends booked for Feb. We had to cancel it in October. Hope we make it - it will be good to get warmer in Feb. Might have a short hair cut by then!!

Take care all
gill

[Guest user]

Yes Gillian - maybe a night guard is the answer. I'm sure the dentist will sort you out. You've got your trip to Skye before No 4. Bet you're really looking forward to that. I'm trying to sort out a little break for us sometime soon. Where??

Don't know whether I mentioned that we have an apartment in Spain. We bought it 4 years ago ready for our retirement. But we weren't planning on retiring for a while yet and now we've decided to retire early next summer we won't be able to afford to keep it on (reduced pension etc) so have put it up for sale. It's a real bummer! Our retirement plans out of the window. We still have the caravan in Wales though which hopefully we will use more often. Hopefully we'll get another trip or two to Spain before it's sold.

My eyebrows and eyelashes are still there AND I'm sure my hair has started growing again! I've got to love my wig though.

Hope you have a good trip to London today Gill.

My son & family coming round this afternoon and then mum for dinner later.

Take it easy girls.

Mal x

PS So far (and I hate saying this) No 4 the best of the lot. Just a foggy head and bad mouth. Slept for England last night and woke at 9.00 this morning.

[Guest user]

I've still got lashes but the eyebrows seem to be going - got the pencil out yesterday!

If you are clenching your teeth at night a dentist could make you a Night Guard.

Taking my youngest back to London flat today for the beginning of term at Ballet School.

take care
gill

[Guest user]

Hi ladies,
wow...No 4 done and dusted? Good for you and good luck with the rest. Have you both had No 4 now? Mine isn't till the 19th as i am 3 weeks apart
If I wasnt "ill" I'd be really chuffed to be having all these tests done, won't get the results of the brain scan for 10 days...so another week prob to go.

I'm fairly sure now (re headaches)it's stress related and I am doing somehting while I sleep by clenching my teeth or something, not sure how to resolve that one tho

Hope you are feeling better now Gill as you come back up from steroid buzzing

Still hanging on to the lashes tho...so well chuffed with that too!
Love to you all and I hope the weekend's going well
Gillian

[Guest user]

Gill - Hopefully good news on Friday & the blighters will have been zapped. My onc was talking to me yesterday saying that chemos don't come any stronger than Epi. So fingers (and everything else) crossed for you.

Did you feel better from visiting the Healing Tree?

Weather actually warm & sunny this afternoon (can't remember the last time) so had a snooze on the sun lounger in the garden. All visitors have been banned.

Take it easy

Mal x

[Guest user]

Sorry you are going down Mal - hold tight til you come up again.

A Healing Tree is a tree with healing energy.

Hope the bucket hold out - just what you needed!

Yes my U/S scan on Monday and onc appt on friday - oh heck!

take care girls

gill

[Guest user]

Glad you enjoyed your overnight in Rye Gill. Just what the doctor ordered. What's a healing tree?

Is it Monday your scan?

Gillian, you will have your results this week won't you? And your no 4 on Friday?

It's scans and results for all of us at the moment. I hate the waiting for results. Tend to do too much 'googling' and scare myself silly.

I'm just waiting for the District Nurse for my Neulasta injection. Last time (I hope). Bad night from the steroids. Was up until 4 am. Felt wired and couldn't settle. But at least I wasn't sick again. Chemo fog really descended now and mouth gone again.

Hope you enjoy your week-ends girls and the weather is better than here. Still got buckets under the roof leaks as it was too wet for the roofing contractor to do anything. He's coming back next week.

Relax girls

Mal x

[Guest user]

Just got back from my trip - to Rye and stayed over night. Lovely to get away, back in time for District Nurse to flush my line oh I hate it.

yes change of plan but so good. I visited a Healing Tree.

Very wet and windy, but we did not care.

hope your fog is not too thick, Mal.

gill

[Guest user]

That's No 4 Epi done & dusted! Just going to have lunch before the fog descends.

Onc sending me for a different scan to look at my liver and adrenal gland. Deep joy!

Enjoy your week-ends.

Mal x

[Guest user]

Oh Gillian - eating and drinking? I envy you. I could murder a drink (you can keep the food!).

What sort of scan was it? I got the results of my CT scan in 48 hours which I thought was amazing. Shows they can do it if they want.

Yep No 3 was better for me too. The 2nd was dreadful. It's just my mouth that never recovers in the 2 weeks between. Will see what delights No 4 has in store tomorrow. Will be sooooooo glad to see the back of Epi.

Gill - hope the weather was better in Hastings than Manchester. We're just waiting for insurance company to send builder after water pouring through dining room ceiling. Buckets galore!! There's no way we could have had fish & chips on the beach.

Take care girls

Mal x

[Guest user]

Had scan wait 10 days...why does everything take 10 days?

Still got most of eyelashes and brows, and leg of course.

Sorry you can't have atipple Mal..only thing that keeps me sane I'm afraid

Feeling MUCH better after Epi 3 than I did with Epi 2...go figure... still, early days, but much more chipper this week.

Hope Hastings was jolly, I had a hoot there at the castle once, the crasiest show I've ever seen, but hopefully all that romantic and dramatic setting will blow the cobwebs away for you

Speak soon, grub beckons...again

[Guest user]

Hi Girls

So you've had your scan Gillian? When's the result thro? I'm sure you'll feel better when you've had the all clear. You sound brighter and looking forward to Skye I bet.

Enjoy your day on the beach Gill.

Have you girls lost your eyebrows or lashes? I'm beginning to wonder if I'm going to lose mine now.

I'm going to have a celebration as soon as I get over the last Epi. Just hoping I will be able to have a drink (alcoholic) then. I tried a couple of glasses a couple of times over the last few weeks but I end up glued to the toilet for hours (I know too much information).

Take care

Mal x

[Guest user]

Hi Ladies,
been busy with scans and stuff but doin OK
Woopdedoody on nearing the end of Epi for you!
Fish and salty chips on the beach sounds great, really looking forward to it now,
finish this week, work one week, away for a week then last Epi for me too! Time will fly
Love to yous
Gillian

[Guest user]

Fish and chips on the beach sounds good to me Gill. Hope your trip comes off and the weather is good to you. Sounds as though you had a good day yesterday. We had a family get together on Sunday for Mum's birthday, the kids and grandkids all together which was nice. My eldest son is over from Spain with his family for a few weeks so it's nice to see them all and catch up (they're expecting their 6th child soon!!).

Last night was spent in casualty with Mum after she had a fall and gashed her leg. So that was fun.

Hope you're out enjoying yourself Gillian and not working too hard.

Take care

Mal x

[Guest user]

I so envy you going away for a few days Gillian. Good for you. We need a bit of luxury to counter the rubbish.

We had a not bad day here is Sussex yesterday - pouring today. I watched my husband and eldest son - not related working together on the fence in son's new garden. it was lovely to watch them - sleeping on and of. Then youngest son came round and we went to his house and hung curtains - I made some blackout linings for his step-son's bedroom.

AND I visited my mum and dad to prove I am getting better again.

I was whacked and slept like a log - proper sleep not chemical wake-up sleep. feel cautiously better today - going to mum's for lunch.

I am loosing weight Mal, I just can't eat the quantity. Every day the hardest question my husband asks is 'What do you fancy to eat?' It won't hurt in the long run and the Diabetic Nurse will be pleased!

I will try and think of Skye and Argyle on 15th - it will be my 4th Epi - if we decide it is working and I continue. I will think of Scotland and the outdoors - I do hope the sun shines for you, or you will have to drink more Whiskey.

Going to Hastings on Thursday weather permitting. I hada fancy for fish and chips on the beach somewhere and youngest son wants to go to the caves - his fiance is into History and my husband is Geography - so there will be plenty to do.

we'll see.

go well everyone.

gill

[Guest user]

Good for you Gillian. Skye sounds brilliant and it'll do you the world of good. It's nice to get away and do 'normal' things for a few days. Glad you're surfacing again. How's the headache? Is it still there?

It's my last Epi this Friday and I can't believe how it's flown. Just hope the taste returns quickly. I've actually lost weight (been trying for ages). Roll on Friday and get it out of the way.

Hope the weather bucks up for a few days from 15th for you. Like you say, it's been a dreadful summer.

Gill - hope you're out of the chemo fog now and enjoying your week-end.

Mal x

[Guest user]

Feeling a bit better for having had a lazy day today!
Could realy do with a bit of that sun up here if you have any to spare!
It's been a lousy summer all in all
Going to Skye and Argyll for a few days from the 15th so reeeeeeeeeeeealy looking forward to that now!
Just to be away and NOT TO TALK ABOUT IT for a few days.
Have booked us in to a stupidly expensive hotal/restaurant on Skye but just thought, if not now...then when!
Love to you all,
we're all getting there I guess, looking forward to the next Epi being the last!
Gillian

[Guest user]

Hi Girls

Just go with the flow Gillian - sleep. I slept for 2 days last week-end and this week I've had to go to bed in the afternoons. It's pointless trying to fight it.

You've had some sun then Gill? We've not seen the sun for weeks! Glad you're feeling a little brighter.

Take it easy

Mal x

[Guest user]

I have been out in the sun - as this is it for summer today.

a bit cheered

if youwant to sleep just do it Gillian

bye
gill

[Guest user]

Hi Ladies,

have officially joined the "weepy club" now. jst feeling so low, probably as i have so little energy just now. Resigning myself to feeling bad for the next 6 weeks I guess!

Epi went OK but having real trouble staying upright, just want to curl up in bed.

Still, I know it will pass eventually. Still hanging on to the brows and lashes, but they are quite thin now.

Hope you are all OK and bearing up well enough?
Have a good weekend girls
Gillian

[Guest user]

Glad you're up but sorry you're in the weepie phase. Good job it doesn't last long. I know I burst into tears the other day when my son brought me a lemon meringue pie that he'd made! He made a very quick getway. Just grit your teeth it'll soon pass hopefully.

What's normal Gill? I begin to wonder.

Hope you're OK Gillian after your Epi yesterday.

Take it easy.

Mal x