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May chemo starters 2018

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Re: May chemo starters 2018

Just reading back over this thread and want to wish mustardandgrey the very best for your first chemo tomorrow
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Re: May chemo starters 2018

Janie, you shouldn't be sick. Phone the unit , let them know, and ask for a change of drug. I hate being sick, I mean really really hate it. So I was very specific I needed help here. I was given Emend and although a teeny tiny nauseous I was very ok. When I was put onto a newer, super drug it just sent me whirly and then to sleep, so I requested the Emend again, and no probs. The medical team want to get you through this as safely and best they can. Don't be shy! Shy bairns  get nowt! X

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Re: May chemo starters 2018

Hi Linda
Welcome to the thread.
You will feel tired for the first few days. I found that I gradually improved, and felt back to my old self after a week.
Please come and chat whenever you like.
Sue xx
Member

Re: May chemo starters 2018

I started FEC on the ROSCO trial on the 2nd May.I feel ok now apart from cold sometimes not hungry and abit tired. I used the cold cap and it did hurt to start off with but went after abit and I was determined to persevere.i rinsed my hair on the same day and washed it 2 days later and just ran my fingers through it until nearly dry with a medium setting on the hair drier. I have 4 cycles initially with an ultrasound after 2 to see if its shrunk it. Then a mastectomy and radiation. Am talking to the dr on tuesday re reconstruction but am getting a second opinion to check i have all options available. I am 51.
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Re: May chemo starters 2018

Shi, I've sent you a pm xx

Shi Community Champion
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Re: May chemo starters 2018

A few more tips that might help, silk pillowcase for when you loose your hair if you are not cold capping, gentler on head, luvyababes dressing up shop have had a brilliant new range of wigs in 14.99 - 19.99, all colours and styles blooming brilliant so worth a look at and a ladysgaver for afterwards no more razors in case of lymphodaema. We had some cold cappers on Oct 2017 thread if any of you are doing that, they will happily help. Hiya mai7 my beautiful 👭👭👭😘😘💕💕✨✨Shi xx
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Re: May chemo starters 2018

I just finished mine, but my experiences might help new starters. Here's a link to my chemo diary

Community Champion

Re: May chemo starters 2018

Janie, apparently Emend is the best anti sickness medication but it's more expensive so you have to ask for it specifically under stress.  Hope you get the nausea and sickness stays under control but if not don't be afraid to ask your medical team for something better.  Xxx

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Re: May chemo starters 2018

@jk71...we're having our first chemo sessions on the same day!
Mine was going to be after lunch but it's been brought forward to 9.30am, much better for me as there's less time to worry beforehand!
Member

Re: May chemo starters 2018

Hi Janie, I was one of the ladies from the Oct thread that Shi mentioned who used sea sickness bands whilst having chemo. I don't know if it was just a coincidence, but I wasn't sick during chemo. (I kept the bands on for several days after I'd had chemo) x

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Re: May chemo starters 2018

Hi May ladies.
Janie ask your chemo team for different anti sickness meds. Not all work for everyone but they've got loads to try so can easily switch you.

Hi Tracey and all the new comers. This forum helped me so much when I was going though chemo I hope you all find it useful. If there's anything you have a question on let us know and we'll try our best. Or pop onto the October 2017 thread and post on there.
Cassie x
Community Champion

Re: May chemo starters 2018

Welcome Tracey xx
Shi Community Champion
Community Champion

Re: May chemo starters 2018

Janie some of the ladies who were on my thread used seabands on their wrists, might be worth s try too, don’t forget to ring your unit and tell them antisickness meds aren’t working, they would rather know so they can get you on something that’ll work. 😘😘😘keep 💃🏻💃🏻🕺🕺🕺💃🏻💃🏻💃🏻And 💪💪💪💕💕✨✨Shi xx
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Re: May chemo starters 2018

Hi everyone,

I would like to introduce myself. I had my first invite for mammogram in February and diagnosed with stage 3 with lymph involvement following a recall and biopsy. I had a mastectomy with ANC on March 20th. Just had CT results which thankfully were normal. I will be starting FEC-T on May 17th.
Being a nurse myself, I am finding it difficult being on this side of treatment. No-one truly understands until they have gone through it themselves. The uncertainty and fear when waiting for results and outcomes is indescribable .
I have been reading the forums and although I have incredible support from family and friends I feel I will benefit from this group and hopefully we can all support each other.
Wishing my best to all of you
Member

Re: May chemo starters 2018

Janie, congratulations for getting through the first session.

Hopng you're still feeling less nauseus this morning.

 

Sarah x

Member

Re: May chemo starters 2018

Thanks Shi, that’s really helpful, what a brilliant forum this is.
Thanks Hets too, all went well, I chose not to cold cap, and I went to bed once I got home. Very nauseous and then very sick a few times. Have taken all the anti sickness meds I was given though and this morning I feel better 🙂 The anxiety beforehand was so awful, but I made it past the first appointment so I hope this helps xxx
Shi Community Champion
Community Champion

Re: May chemo starters 2018

Beautiful, 💪💪💪ladies, ❤️❤️❤️, keep focused and keep positive. Break each cycle down into 3 weeks, it’ll make it go quicker. A few tips as you start on your chemo journey, drink 2-3 litres fluid a day, soft toothbrush and biotinene mouthwash mouth hygiene is important, I used antiseptic wipes for injections and did my injections looking into mirror grab hand full belly fat and do alternative sides of belly button, you will be fine doing it, keep postits up in kitchen so you can keep track of taking antisickness meds, steroids, and ticking off your jabs, you will get chemo brain, also steroids make you go online shopping 🤪🤪🤪🤪of you get thrush mouth ask your onc for fluconzole tablets and difflam mouthwash. If your antisickness meds don’t work ring your unit, they will swap you for not different meds. Get anosol bum cream and sudocream, botty can back up with the meds. Paint fingernails with black polish it protects nails from uv light during chemo and will protect your nails also vitamin e oil into cuticles. Udderly smooth with urea cream from amazon for hands and feet and also a body moisturiser, your skin can dry out a bit during chemo. For fec chemo, suck Ice lollies while they put the red one in, it helps preserve your mouth, when on t, Epsom salt baths. Thermometer to keep track of your temperature and a diary do you can keep note of temperature and time you’ve had meds and done injections. The most important thing is even with no temperature if you feel unwell phone rapid response number, if your wee burns, phone rapid response, anything you phone rapid response, you will get through this and it’s important to keep yourselves safe which you will and you will get each other through this and we are all here to ❤️❤️❤️And keep you 💃🏻💃🏻🕺🕺💃🏻💃🏻🕺🕺through, get a shared journey to focus on which you’ll all be together on, we had a 🚂, November had a 🎢January are 🏊‍♀️And are teaching the beach now. You are all beautiful and 💪💪💪hope this post helps a bit 😘😘💕💕✨✨✨Shi xx
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Re: May chemo starters 2018

I also had diep reconstruction because after five kids there was plenty excess tummy skin lol. Sue thanks for the welcome. Hets67 I’m sure it’s not going to be as bad as we think. I will let you know how I get on next week when my first session is over xx
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Re: May chemo starters 2018

@janie L hope today was ok and you’re back home resting!
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Re: May chemo starters 2018

@melsy68 btw you sound like you’ve been amazing with the pain! I had my mx on 26th Feb and I had weeks of pain, really only weaned myself off ibuprofen a couple of days ago. I did have re-incision on 26th March to get clear margins but I couldn’t say I didn’t experience any pain! The surgeon was brilliant so I don’t think it was his fault I think I must just have a low pain threshold.
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Re: May chemo starters 2018

@melsy68 oh! I had immediate reconstruction but with implant because there wasn’t enough of me to go around! @jk71 I’m also v anxious for some reason I think it’s that there seems to be so much to think about and so many things that could seemingly happen. I’ve got my pre-meet with the BCN tomorrow morning so I’m hoping that will help because I’m def overthinking it atm!
Community Champion

Re: May chemo starters 2018

Welcome Jk.
Sorry that you too have found yourself here, but we all try and support as much as possible.
Please don't be worried about the chemo. The nurses will look after you on the day and then just take it really easy for a few days after. I found that I felt absolutely fine a week later.
Please feel free to ask questions and share any tips you learn along the way.
Best wishes
Sue xx
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Re: May chemo starters 2018

@hets67    

DIEP is the immediate reconstruction method I chose at time of mastectomy. They take fat from your tummy to make a new breast. Although my surgery took 7.5hrs I can honestly say I didn't experience any pain and recovery is extremely quick😊 

 

Ironic we we all seem to be 50ish x

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Re: May chemo starters 2018

Hi. I’m having my first chemo session on the 7th and tbh I’m rather scared about what’s to come. I’ve had some reassurance by going through other people’s posts but it’s still worries me. I’m 46 and had a mastectomy with reconstruction on the 20th March. Good luck to everyone who’s about to start or has already started their treatment xxx
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Re: May chemo starters 2018

To add a bit more about myself I was diagnosed in December and had a WLE in January which didn't get clear margins. I then had a mx in late Feb and SNB which found it had spread to 1. It’s triple negative. So not wishing to have a 3rd op so soon I’m starting chemo tomorrow before then having a full clearance. To continue the birthday theme I’m 59 on Saturday xx
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Re: May chemo starters 2018

Thanks Sue, that’s really helpful. My PICC line is now in, so I hope I get some sleep tonight x
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Re: May chemo starters 2018

I’m 51, diagnosed 5 days after my birthday. Same paths as Melsy68 but what’s a DIEP? In hospital dozing after port-a-cath insertion. Hoping it’s been worth the effort and saves my veinsSmiley Happy
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Re: May chemo starters 2018

I know!  I didn't have a lump or anything, mine was caught on my very first, welcome to being 50, screening mammogram in January!

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Re: May chemo starters 2018

The joys of hitting the big Five 0 !
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Re: May chemo starters 2018

Hi, Mellssa!

I'm also 50, diagnosed on 9th February.

I had a WLE and SNB, followed by a second operation for clear margins and full lymph node clearance as I had a positive sentinel node.

I'm in Wales xx

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Re: May chemo starters 2018

Thanks Sue for more tips/advice.

 

Hello to everyone, I think we are all going to find this forum extremely helpful!

 

To introduce myself: diagnosed end of January. Sentinel biopsy 14th February. Nodes clear.  Right mastectomy and DIEP in March (discharged on my 50th!). Not the best birthday present but recovery has been extremely good and now the next chapter is 6 x FEC. I'm under Broomfield hospital, Melissa x

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Re: May chemo starters 2018

Thank you, Sue x

The problem with injecting yourself is that you can't look away Smiley Happy

I think I'm going to have to face that fear head on, take a deep breathe, jab and hope for the best!

 

Community Champion

Re: May chemo starters 2018

Yes Hets, injections in the mouth are far worse than anything else we have to bear!

Re. gscf injections........I was provided with a sharps bucket by the chemo nurse. No wipes though, although no one asked for that to be done. I'm currently having monthly zoladex injections and they give me a cream for that to numb the area, so if you have problems, ask for that. I initially had the district nurse come out and do it, but they weren't keen long term and I was a real woss, so couldn't do it myself. In the end a friend/ nurse did it for me! What I would say is that it can give you bone pain after. Take the ibuprofen and it clears up pretty quick.

Sue xx

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Re: May chemo starters 2018

I must admit, I'm slightly concerned about the injections.

I've been told I'll be self injecting at home for seven days each cycle.

The ocologist said ''it'll be easy, you just grab a bit of fat from the tummy with one hand and inject with the other''

However, I'm not convinced it'll be that easy...

Do I need to buy alcohol wipes and a sharps box or do the hospital usually provide them?

(long list of things to ask at the pre assessment tomorrow!)

 

Sarah x

 

Member

Re: May chemo starters 2018

Brilliant thank you! Just had an hour at the dentist and the worst injection ever - overshadows the mastectomy!!
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Re: May chemo starters 2018

Welcome Hets and Janie

In terms of meds, your chemo team will give you the steroids, anti sickness tablets and possibly gcsf injections. If the anti sickness tablets are not effective, then let them know as there are others they can try. Main essentials for you to get would be a thermometer, constipation/ diarrhoea tablets, and some ibuprofen ( try to avoid paracetamol ). Personally, I didn't need anything else.

If you can prepare any meals in advance, that would be great, or just get in some simple things that can be heated up in the oven.

Sue xx

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Re: May chemo starters 2018

Thank you! Hello everyone. I am having my PICC line in on the 2nd and then start FEC-T on the 3rd. Am anxious but BCC has helped a lot xx
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Re: May chemo starters 2018

Hi, I start FEC x 6 on 10/6. I wish there was a sort of shopping delivery service for people about to go through it because it’s hard to focus on reading lots and yet it’s clear there are things to be getting into the cupboard which would make things easier!! Hmmm do I feel a new business idea coming on or has someone beaten me to it?
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Re: May chemo starters 2018

Hi melsy and Sarah
Welcome to the thread. Please ask if you have any queries.
If I were to offer advice at this stage, I would say prepare yourself for the first week when you don't feel upto much. Stock up the fridge, get the washing done, and have all your meds at hand. I'm not saying that you feel ill, it's just you might want to take things easy.
Hope this helps
Sue xx
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Re: May chemo starters 2018

If you want to ask us anything at all anytime, you can pop into the May or October 2017 threads and someone will help you.  We May and October ladies are all buddies as two of us made friends in the real world so we have kind of joined forces! We have a lot of experience! Have you got your biotene toothpaste, mouthwash and gel for dry mouth? That's what most people use on chemo and get yourselves some sudocrem in stock. Nuff said.  Xxxx

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Re: May chemo starters 2018

What a wonderfully written blog Mai, I've made a note of the foods & drinks you found beneficial and glad you're now doing so well. thank you Cassie for popping over to give us support too x

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Re: May chemo starters 2018

To Cassie and Mai - I think it's so lovely that you have popped over from previous threads to advise and chat - thank you!

 

Sarah xx

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Re: May chemo starters 2018

Hi may ladies. I'm from the October thread and finished chemo in Jan. Any help or advice you need please let us know and we will try and help where we can.
Cassie x
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Re: May chemo starters 2018

Hello May ladies,  I just wanted to wish you all the best as you start your chemo.  I joined the May starters a year ago and i just want you to know you can get through this.  I can't believe is a year ago since I started chemo and here I am now with hair once again.  We May ladies gathered a lot of knowledge along the way and I have documented it in a journal so its easy to share with others. 

Here is my story which I hope you find both comforting and useful:  http://lifeafterlola.blogspot.co.uk/

Much love. xxxxx

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Re: May chemo starters 2018

Hello!

I'm also having my first FEC T next week, on the 7th.

Not really sure what to expect, at the moment it seems a bit surreal.

 

Sarah x

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Re: May chemo starters 2018

Thank you for starting this thread. I'm beginning my first of  6 x Fec on May 14th x

Community Champion

May chemo starters 2018

Hi Ladies

This thread is for those of you who are starting chemo in May. Hopefully you can all help and support each other along the way. 

I had chemo in 2016, so happy to help where I can.

Best wishes

Sue