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November 2017 Chemo Starters

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Re: November 2017 Chemo Starters

I went with the senna option last night and feel sooooo much better this morning!!

 

Bythesea, you will need to speak to your surgeon to get the ok to book a trip - if he ok's it and then you have to cancel you will be covered by your insurance.  They put it in your notes.

 

When I finished surgery and was moving on to chemo I spoke to him and we agreed a date in June 18- so I've booked to take my son and girlfriend to the Algarve for a week - big incentive to get sorted!

 

As JC says, I am sure Centre Parcs will give you a lift, but be strong and straight with people - if you're not up to something let them know..... this is all about you now.... if we can't be selfish now when can we??

 

Hopefully my se will remain subdued - feel as if I am being a bit of a fraud at the moment.  Other than tongue and taste affected and stomach feeling bloaty, I 'm ok 

 

 

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Re: November 2017 Chemo Starters

Thanks jc, poopy dancing did the trick. It's all the people I'm worried about, including family!
This might be a bit premature but now that only two chemos to go. I should have surgery middle of march then 4 weeks of rads I'm starting to think of the end. Will it ever? I'm thinking my usual May Ibiza trip will be a no go but what about June July plans??? Or should I just wait and see and go back to eating the elephant one bite at a time???x
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Re: November 2017 Chemo Starters

Have you tried some senna - I was similar around day 5 and took some. It helped 💩
I found center Parcs helped me as a change of scenery and I even enjoyed the 🚲. I kept away from the spa and the swimming, I played a little badminton, mini golf and 10 pin bowling using a lot of anti bac. I had rests in between - it was lovely being out in the open among the trees and breathing in the fresh pine air. I live in north London so getting away was good for me. Have fun!! 😊😊
Xxx 🤗😗🤗😗☄💕☄💕
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Re: November 2017 Chemo Starters

Job sounds fab harryfiddler!

And it's starting to sound as if T may not be as bad as FEC, I know don't speak too soon

I have a parents evening the night of my first T, OH is insisting I stay home just in case I crash like I did on FEC and draw attention to myself 😄

Off to watch son play rugby.
Happy Sunday everyone xx
Member

Re: November 2017 Chemo Starters

Hi Harry fiddler,
I ended up at a concert the night of my first T. I had thought it was the day after but anyway. It was fine. Mine was a ceilidh band concert, I was seated which made it easier and I wasn't pressed up against germy people ha! I think you'll feel fine just don't catch any bugs!!!! And enjoy x
I'm day 5 today and feeling a little bagged up so if anyone has a moment I would appreciate a little poopy dance please? Really starting to worry about centre parks trip next week. I'll be going from peace and quiet just the two of us and dog to full house of family!!! Argh not to mention all those holiday park germs! Freaking out!
No real injection pain tho so hoping to be lucky just a few twinges!!!
Happy Sunday xxx
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Re: November 2017 Chemo Starters

Morning Harryfiddler just as Otter and Lesley have said I too was fine the night of & the day after the first dose of T. You'll still be on your steroids - my se's kicked in on day 4 - day 8.
Your job sounds a lot of fun - try and go for it, but have a plan b just in case 🤞
I have 10 injections after each chemo starting on day 2, so I still have 22 out of a total of 60 left!! My poor belly 💉💉💉💉
Xxx 🤗😗🤗😗🤗☄💕☄💕☄
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Re: November 2017 Chemo Starters

Yeah day 11 for me and apart from a blip on day 8 feel ok apart from think caught twins cold😥

 

I've hidden the scales as its to depressing 😱😱😱😱

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Re: November 2017 Chemo Starters

Hi harry fiddler
Based on my experience I’d say you’d be ok... as otter said, nothing like FEC and felt ‘nornal’.

Day 4 for me and still feel ok ... bit of a twinge in one knee but nothing substantial .... the scales have crept up though!!

Hope everyone is ok
Xx
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Re: November 2017 Chemo Starters

Hi Harryfiddler

 

Some might say you were mad but I the first eve I was thinking how well l felt compared to fec as I had also managed to eat a proper meal we're as previously I hadn't wanted to eat

 

If it just involves sitting and watching I would think you would be ok as long as you don't have a reaction which I was told is rare on first dose of it's going to happen it normally on 2 or 3 😱

 

Anyway sounds like a great job I'm not at work at the moment as gp doesn't want me in the office with all the winter germs

 

Hope everyone has a good sunday😘😘😘😘🤗🤗🤗🤗

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Re: November 2017 Chemo Starters

Daily injections? Yuck. I get one, 24 hours post chemo. You only qualify for them if your white blood cell count drops below 1 after your first chemo, but my onc somehow gets the supplier to donate a shot for the first chemo. Which, considering my WBC was hovering around 1.5 before I even started treatment, was a relief. 

 

Another q for those who've already had their first T. I've just been asked to work on the night of my first T. I'm a music critic, so work means going to a concert then writing 350 words the next day, which is a pretty nice kind of work, so I'd love to do it. Am I mad to think I'd be able to work after a morning at the cocktail bar, or should I risk it? Sounds like it takes a while for the SEs to kick in. 

 

Waving from Oz

harryfiddler

xx

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Re: November 2017 Chemo Starters

I've discovered Riccola herbal sweets are quite good for a temporary relief of chemo mouth.
Just watched the Voice and am now off to bed. Goodnight 😴😴😪😪💤💤💤
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Re: November 2017 Chemo Starters

Hi all
I hope you all have had a good day with SE being kind to you.
I am starting my pre-chemo nesting with stocking the freezer with at least a weeks meals and ensuring all school uniform is clean and ironed and that the house has been cleaned from top to bottom.
I am too on filgrastim injections, green ones, and have been since the first FEC, 7 injections starting day 4 and only experience achy bones, just chest and arms, for the first 48 hours.
Have a good evening ladies
Carole x
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Re: November 2017 Chemo Starters

Hi all

 

My injection are filgrastim too but are purple

Taste furry mouth and injection pain are the worst as of T also fatigue but get that with fibo anyway😱😜🤗😘

 

Hope you all have a good weekend

 

Xxxxxxxx

Member

Re: November 2017 Chemo Starters

hi Bythesea, fingers crossed a furry mouth is the worst of it - tastes are changing, can't bear any of my green teas and so switched to coffee..... just been out to sainsburys to pick up decaf coffee and returned with books, pineapple, banana and brocolli and no coffee..... trip to the village shop now!  Chemo brain!!

 

yes you can pick up clarityn over the counter - if you speak to the pharmacist the clarityn are about £10 a packet but they can give you the unbranded version (loratadine) for about £3 for the same amount 

.

My injections are filgrastim - nivestim, little green buggers!

 

love to all 💕

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Re: November 2017 Chemo Starters

Morning ladies,
Hope we are all fairing well x.
First night if injections for me last night and so far so good. Lesley I don't think I really got side effects on t except the injection pains. Furry mouth crazy temps but bearable so maybe you'll be lucky. Fingers crossed. Can I just buy Clarityn over the counter? Don't want to be missing out ha x!
My injections are Filgraston anyone else on them???
Annakarenina loved the glitter body suit wearing champion!!!
Take care ladies and enjoy the weekend xxx
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Re: November 2017 Chemo Starters

Deal!

xx

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Re: November 2017 Chemo Starters

I'll remind you if you remind me! Deal? x

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Re: November 2017 Chemo Starters

thanks AnnaKarenina - right back at you!!

 

I too overestimated my abilities pre chemo 4 and wont be packing my diary with as much for 5 & 6 .... but you might have to remind me of that later in the month!

 

 

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Re: November 2017 Chemo Starters

Hello everyone, I am like you Harryfiddler pre-chemo. I am so grateful to be feeling 'normal' (or what passes for it) and pack the week or so before my next dose with stuff. I did find I overestimated my abilities before my 4th cycle and ended up tearful and exhausted after a particularly long day at external meetings, running round Central London buying things I could have bought anytime and then giving an evening lecture. Fortunately, I'd left the stage before the tearfulness kicked in! It was a lesson learned and when I was putting things into my diary yesterday, I was much more cautious about not filling every available minute with commitments. 

 

Lesley, long may the travel continue to be smooth rather than vertiginous. I really hope it continues, but if the horrid SEs do arrive, remember we have got you and will be supporting you through the dips. I know how prepared and informed you are for what might come, plus you've got your crew here and the wise women who have gone before us (especially from the October thread) in your amoury. Hang in there my glitterly bodysuit wearing champion. xx

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Re: November 2017 Chemo Starters

hi harryfiddler

yes definitely an uplift in activity pre-chemo, but then I let some things slide this time, and left them for to be picked up by the steroid rush.... which sort of came!

 

The injections are gsf injections (nivestim??) to promote white cells as you say.  For FEC I had a 5 day course starting on day 5, and for T its a 7 day course starting on day 2.  But not everyone over here gets them, some get 10 days, it all depends on the Trust and their funding and thinking.

 

Day 3 of T for me, slept ok last night, it didn't feel like a deep sleep, but woke up feeling ok.  No pains or any se yet...... I am getting a little nervous ...... when is the se 🎢 going to kick in???

 

Hope everyone else is ok and not having too bad a time of it

 

Weekend 💕 and 🤗 to all

 

xx

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Re: November 2017 Chemo Starters

Hi from sticky sweaty Australia!

 

I hope you're all keeping nice and warm, while I do my best to stay cool. I'm doing bloods on Monday then, all being OK, back to the cocktail bar on Tuesday for my first dose of T. *cheery big girl laugh* Does anyone else get that thing where you race around trying to do EVERYTHING in the days before chemo? Also, you've been talking about daily injections. Which ones are those? I've just had one the day after chemo to stimulate my white cells. 

 

Re claratyne, one of the onc nurses pressed a sheet of tabs into my hand as I left my first FEC and said 'take these now'. Made a big difference. 

 

Sleep well, rest up and thank you for keeping me company from the other side of the world!

Harryfiddler

 

Shi Community Champion
Community Champion

Re: November 2017 Chemo Starters

Lesley darling, I’ve answered your question on Oct thread 😘😘💕💕✨✨shi xx
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Re: November 2017 Chemo Starters

Hi ladies
Lesley, Annakarenina and Otter hope you are still doing okay and that the nasty SE are not raising their ugly heads.
JC hope you are feeling better soon, be kind to yourself, me I love an egg mayo sandwich
Feeling apprehensive as I I now only have 5 days left before first T, but have lovely dark navy nails, Epsom salts and udderly cream in the cupboard and the world of pain killers on standby, what could possibly go wrong 🤔 😄
Hope you all have relaxing evenings and a good nights sleep.
Sending hugs and positive vibes to all 💕💕
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Re: November 2017 Chemo Starters

oh bless you JC - I love a good egg mayo butty!!

 

You've got me thinking now!!

 

sending you hugs and lots of steroid energy over the www!!

 

take care and listen to your body

 

xx

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Re: November 2017 Chemo Starters

Afternoon everyone!!
Still struggling & in bed, phoned the unit this morning - said everything sounded normal but could ask gp for sleeping tablets. Had egg mayo sandwich for lunch - I don't eat egg mayo but it really hit the spot!!!
Lesley - you have a fine pair of pins in your gold suit!! Hope you & Annakarenina are doing ok.
Take it easy ladies and rest up as much as you can xx
🤗😗🤗😗💕☄💕☄
Member

Re: November 2017 Chemo Starters

you look after yourself Otter - build yourself up.

 

I'm feeling normal stil, but resisting the temptation to do too much, just going to nip out for a quick walk then more sofa time I think!

 

xx

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Re: November 2017 Chemo Starters

The night I forgot to take clarityn the next day the pain was bad so I'm taking as well even if oncologist doesn't agree😜😜

 

Only 1 left tonight 🎉🎉🎉🎉🎉🎉

 

Got a bit of a sore mouth tongue and throat but temperature is fine and as both twins have heavy colds so think I've caught it😥😥

 

 

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Re: November 2017 Chemo Starters

It's in the post Bythesea!

 

Crazy that they didnt like the idea of the clarityn, it is standard practice in the states and as I said my onc is now prescribing it and using it for other patients as well.

 

I'm a bit of a rebel so I'd take it anyway .... anything to stave off the pains!

 

rest up now - don't go mad with anything

 

xx

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Re: November 2017 Chemo Starters

Morning ladies, I too slept well after my late steroid dose last night! Not looking forward to starting injections tonight tho :0(
My onc poo pooed the clarityn and just told me to double dunt on paracetamol and ibuprofen!
Heading away with my family next week and don't want the super slow walking shuffle I had last time ha! Need to borrow that jump suit of yours Lesley x
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Re: November 2017 Chemo Starters

Morning all

 

good to hear you got thru your day AnnaKarenina, those Bridget Jones, big girl pants did the job then!! 

 

I think fear of the unknown is the biggest fear we can have. But you know we are all here for you and for each other. Without this thread, I think my journey thru chemo would have been anything like it has been.

 

I had quite a good night, dozed until 3am and then slept until 8.30 - so can't complain.  And woke up feeling normal .... well normal for me.

 

Obviously this is the calm before the storm, but I will try and make the most of it before the steroid crash tomorrow!!

 

Hope JC and Otter are feeling better this morning.

 

Sending hugs and love as always

 

xx

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Re: November 2017 Chemo Starters

Glad you were treated well AnnaKarenina 😊. Hope side effects are kind to you. Cycle 4 turned out pretty well for me.
Fear of the unknown is often worse than reality x
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Re: November 2017 Chemo Starters

Morning everyone, I cannot tell you how cheering it is to return to this thread post-chemo. Giggles and honesty about the nonsense that this treatment can cause. It is brilliant. And Lesley, I glimpsed your outfit photo just before I sat down in the chair yesterday afternoon and went from shaking with nerves to shaking with laughter - thank you!

 

As with much that I have anticipated along the way, the portacath access was much better than I feared. But boy were those fears visible by the time they had got all the kit out to begin. Fortunately, I had the most patient, understanding, skilled and kind staff looking after me. It took two goes (you can imagine how I responded when they broke it to me that it wasn't flushing and would need to be removed and reinserted) and more nonsense on my part than any grown woman should indulge in, but it went in quickly the second time, with limited sensation and it ultimately made the process easier. It's almost as if everything that everyone told me turned out to be accurate!

 

I am feeling pretty headachey, spaced-out and nauseous as usual this morning, but knowing a) I survived the port business, b) I have now completed cycle 4 and all my EC treatments, c) that means I am half-way through and d) the latest scan and examination/measurement show an increasingly positive response to treatment so far, make it possible to push through. I may need to return to these four facts when I hit the steroid crash days next week and nauseousness is hanging around.

 

Have a good day everyone. Do what you need to do to make it as okay as possible. Thinking of you all and especially Anadan who it was great to hear from - keeping everything crossed for no more disruptions and good news about scheduling the next session. xx

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Re: November 2017 Chemo Starters

Well done, lovely ladies ✨✨✨✨✨ you’re wonderful 😘😘😘 and doing so well 💕💕💕 

 

I’m hanging there, at the back of 🚋🚃🚞 , my last fec next Tue  (won’t accept anything different)

 

thrush, yes, a horrible thing 😫 knocked me down last time 😫 I have Difflam regularly, but fluconazole was given only last week, when onc looked in my mouth 😱 must try your home remedies with apple vinegar 👍 thanks for sharing xx

 

my eyebrows are going, I look really wierd ... all my hair is gone 👍 everywhere 👍 one good thing 👍 enjoying while I can 😂😂

 

good night to you all ✨💕 

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Re: November 2017 Chemo Starters

Love it Lesley... What a hoot!!! Hope you and annakarenina do well tonight. Maybe little nausea on way back to car was just nerves settling as it was all good?
I've forgetten to take my steroids at lunch so better pop them now and hope I can sleep doh!
I had surgeon appointment today so looks like op will be 21st March then rads! By then some of you will be rad queens. Need to keep my informed xxx
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Re: November 2017 Chemo Starters

Well done Lesley, hope you are okay too Annakarenina 💕💕💕
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Re: November 2017 Chemo Starters

Hi Lesley

 

Hope you managed to get back to sleep after call ☎ one thing I don't miss about being at work but starting to get a bit stir crazy😜😜

 

 

Member

Re: November 2017 Chemo Starters

Already crawled into my pit and woke myself up snoring Shi!!   Fortunately just in time for a conference call!!

 

Only to rest up but dont want to sleep too much in case it impacts on tonight 

 💤🛌

Shi Community Champion
Community Champion

Re: November 2017 Chemo Starters

Lesley 😘😘well done on getting 1st t done darling, rest up and get the fluids going 😘😘😘💕💕✨✨✨shi xx
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Re: November 2017 Chemo Starters

oh JC I am feeling your pain!  Hope you start turning the corner soon xx

 

Back from the first T - 2/3rds of the way thru now!

 

All good, no reactions, but I feel wiped out now, so may curl up on the sofa

 

Thought I was going to throw up as I walked back to the car but managed to quell it - don't know what that is all about.

 

Will be thinking of AnnaKarenina this afternoon.

 

We got this ladies!!

 

xx

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Re: November 2017 Chemo Starters

Lesley, after having a crap night you really made me laugh 😄😄
Good luck to you and Annakarenina for today's 🍹🍸 I shall imagine the pair of you in your golden outfits 💪
Am still in bed with little energy, have had a touch if sickness most days, last night's wiped me out. Sleep is all over the place. Temps are ok xx
Shi Community Champion
Community Champion

Re: November 2017 Chemo Starters

😂🤣😂🤣😂🤣😂kick t ass Lesley’s back 😁😁😁love it Lesley, hope your first t goes well, get the fluids down you like usual. Difflam and fluconzole for thrush mouth, I’ve had it every round, never had thrush in my life at either end before this. Annakarenina 💪💪💪hitch those gold hotpants up lovely or go for full gold power ranger suit like Lesley 😘😘😘💕💕💕✨✨✨shi xx
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Re: November 2017 Chemo Starters

what treatments did you have from Haven - I have a healer coming to the house next Tuesday and I'm a bit hesitant about it if I'm honest??

 

xx

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Re: November 2017 Chemo Starters

That's great Lesley 😂🤣 good luck ♥️
Annekarenina I have my first Haven appointments next week as I had to cancel this week's because chemo was delayed. Are you going to the London one or elsewhere?
Otter am using difflam too but also anything else I can try 😉
Temp 35.1 degrees when I woke up this morning but now 35.6 so phew no hospital call 😳
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Re: November 2017 Chemo Starters

Brilliant Lesley love it 😂😂😂😂

Bug hugs to you and Annakarenina today 💕💕💕

Off on the school run them nose into laptop again for me today.

I hope that aches, fatigue and mouth problems are starting to improve and that everyone had a good day today xxx
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Re: November 2017 Chemo Starters

4D102C06-0FA9-4119-9E43-BC98E486BB89.GIF

 

This one is for Shi ....... me getting ready for chemo 4!!

 

Didn't sleep too badly 2330-0530, no complaints there!

 

See you after the cocktail!! 🍸🎢💕

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Re: November 2017 Chemo Starters

Thank you for the positive thoughts everyone. And for all the port access advice and love in response to my worries about it. Not up until 4.30 this afternoon, so will try to keep busy. I went to The Haven yesterday for the first of my ten sessions and it could not have been better timed and more helpful. They are an amazing charity.

Thinking of you Lesley this morning and of everyone being so resilient in the face of aches, pains, thrush, fatigue and more. You are fab. Xx
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Re: November 2017 Chemo Starters

Ruth I have Difflam will that work

 

Good luck to T starters tomorrow 😍 

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Re: November 2017 Chemo Starters

All the best for tomorrow Lesley and annakarenina 🍀🍀🍀
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Re: November 2017 Chemo Starters

Ohh cider vinegar hadn't thought of that - thanks so much Lizabeth will try that out tomorrow 💕
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Re: November 2017 Chemo Starters

Hey Ladies,

I wanted to pop on and tell you what worked for me with having thrush on the tongue after chemo treatments.  I took about 16 oz of water with a teaspon of apple cider vinegar, teaspon of honey, lemon juice and grated ginger.  It wiped out the thrush in a couple of days.