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starting my pink road of cemo, 15th nov

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poppy333

hey fello pinkies

starting 6x FEC on 15th nov, n would like to hear from anyone thats starting around the same.

kaz xx

Janvis
Re: starting my pink road of cemo, 15th nov

Hi Kaz

I start my 6 x FEC tomorrow - so will be on the same journey as you. Not sure I will sleep much tonight.

Jan

poppy333
Re: starting my pink road of cemo, 15th nov

good luck hun, let me know how u go xxxx pink hugs.

Janvis
Re: starting my pink road of cemo, 15th nov

Thank you - I will do.

I have mixed views - not wanting to go through with it or wanting to get it over and done with. May feel better after the first one

Jan

woodlandmanor
Re: starting my pink road of cemo, 15th nov

Hi just wanted to wish you guys luck for tomorrow, I have had 3 fec and was terrified, it really was fine just take all the anti sickness they give you (I wasn't sick once) and take stuff to stop you getting constipated - lots of fresh fruit. I sucked ice while the nurse gave me the chemo and I am sure this stopped me getting a sore mouth. I was up and about every day and even managed to still put my slap on. Of course its scary just sit there and think of it as nectar to make you better, the more you embrace it the better it will work I am sure of that. Lots of love and will think of you both in the morning xxxxxxx

Janvis
Re: starting my pink road of cemo, 15th nov

Thank you - its good to hear of someone going along the same road and doing so well.

I am not usually good with any medication - always have a side effect or 2. So not looking forward to this treatment but will take on board your advice and think of this being good for me.

Did the hospital provide the ice for you or did you take it with you. I have not heard this tip before

Jan xx

poppy333
Re: starting my pink road of cemo, 15th nov

thanx for wishes.

ive heard suking ice helps reduce the sore mouth. if i took some with me it would be melted when i got there!! lol
an ice lolly would be ncie though even if nov

i start in 2 weeks so im not far behine you janis

xxxx

juliebtaurus
Re: starting my pink road of cemo, 15th nov

Hi Poppy 333 and Jan make sure you drink at least 6-8 glasses of water or juice before and during chemo ,I also sucked on sherbert lemons which helped with the dry mouth and metallic taste. I also wore travel bands ( or sticking 2 sticking plasters behind each ear, it helps with car sickness too) during chemo and i only had sickness once on cycle 3 which soon settled when they changed my sickness tablets to Emend and have been really well throughout treatment.I also took a vit c and ernechea supplement ,it helps with immune system and keeping your blood count up so no delays in treatment. ( I had 6x FEC finished end of Aug and 20 Rads finished last Thursday )good luck i think its just fear of unknown and not knowing what to expect and how it'll effect you but it wasnt as bad as i feared ,and i was petrified i even said i wasnt going to have it at first out of fear i wanted to run away .you cam message me anytime xxxLove and hugs Julie

yellowroses
Re: starting my pink road of cemo, 15th nov

Hi I am starting chemo tomorrow 3rd November FEC 6 cycles. Had three operations resulted in a mastecomy on 21st September. I am ER + HR2+. I am aged 42 with two children aged 9 and 4. I will let you know how it affects me but I think everyone can react differently.

SUZYB
Re: starting my pink road of cemo, 15th nov

Hi Kaz, also starting on 15th Nov hopefully but there has been a lot of delay in other things up to now...FEC-T is what I'm having, the hair loss is what is upsetting me most. I'm up and down a lot, wish it wasn't happening but it is. Take care xxxxxxxxx

Minny
Re: starting my pink road of cemo, 15th nov

Hello Ladies,

I'm starting in a couple of weeks, but as yet i don't have an exact date or do i know what i'll be having. I hope you all don't mind if i'm not on the same regime as you.

I'm 52 and this is a recurrence. I didn't have chemo before so this is all new for me too. I notice suzy is having trouble sleeping! Something in common already!

It can't be all doom and gloom (even though it feels that way at the moment) so look forward to sharing the laughter and the tears.

Minny x

juliebtaurus
Re: starting my pink road of cemo, 15th nov

Hi Girls ive already sent poppy 333 a private message with all my chemo tips im sure i dont mind sharing with them you all if you want to . i know how worrying and frightening it is at this stage . I was given a choice of chemo or not ( which was a huge dilemma and i nearly chickened out the night before and said i changed my mind and i wasnt going to have it ) but i new it was only fear making me feel that and deep down i knew it was the safest and sensible option and now its behind me im really glad i did.i know theres still no guarantees but at least i know ive done everything that can be done to get better and i didnt want to spend the rest of my life doing the "if only" if god forbid it should ever come back .Loosing my hair was the biggest thing for me aswell and i never thought i would be strong enough to get through , but i have coped really well ,been on holiday and swam in my fab wig which they colour-matched and styled the same way as my hair . I have been nose distance from my neighbours and friends some of who didnt know . I have just bumped into one of my neighbours who i havent seen since diagnosis bless her and told her 5 mins ago and she burst into tears as it was such a shock she didnt know ( she was worse than i am now ) i had to give her a hug ha ha. i finished my chemo end of August and finished radiotherapy last week and im lucky i have been well all the way through ( nobody noticed in our house what i have got to do to get some sympathy around here x) please message me anytime and ill forward any tips that got me through with a lot of help and advice from all the other amazing ladies on here . you will get there ,and you will soon be passing all your tips onto others to help them too because i know it doesnt feel like it now but it does go over extremely quickly. hugs and love to all ,good luck for your treatments next week ill be thinking of you all and hope it goes as smoothly as mine xxJulie

poppy333
Re: starting my pink road of cemo, 15th nov

hey all.

thanx for all your posts.

yellowroses, hope today went ok, keep us all posted.

minny, of course you can join in, we are all pinkies . x

jules, thanx for your words of encouragement, from someone who knows, you can be our queen pinkie in this tread. lolthe private message you sent, i will reply, the tips are fab and be ace if u could post them on here.

xxxx

juliebtaurus
Re: starting my pink road of cemo, 15th nov

ok gorls heres a copy of the message and tips i sent to Poppy ( sorry its an epic .Its what other ladies on here posted to me to help me through it and it certainly did.x

Kaz the hairloss was also the biggest thing to me and i remember crying about it and feeling guilty cos i felt so vain but its natural our hair is our crowning glory and makes us who we are . i recommend that you go to try on wigs before you lose you hair as i did because she colour matched it and cut it to my own style and even my husband and daughter thought i'd just been to the hairdressers they didnt know it was a wig I went to Hot hair in metro centre ( dont know if you have a similar branch near you but others ive recommended have all been happy and confident with their wigs .Igot a voucher from chemo nurse or BC nurse and it didnt cost me a penny and it would have been £100 .I would advise you to get a lace front monofilament wig as it has a realistic scalp and its cooler it can also part anyway and is amazingly realistic when the wind blows it ( mines been helicopter tested it wont come off )im wearing it in my profile pic.I shaved mine off may bank holiday cos i was sick of being like a labrador and moulting i didnt dare touch or wash it cos it was coming out in my hands it lasted untill my 2nd chemo ( only just) and my hubby got the clippers out and we both laughed and cried as he gave me a mohican. it is a huge thing to do but it is doable.Ive been on holiday abroad between chemo and rads and even been swimming in mine nobody flacked and eyelid.Ive been realy lucky that i havent been too bad at all during chemo i found that i had afternoon appointments about 1pm( drank loads juice before ) it took about 1-2 hours it went in from 3 syringes 1 at a time but all through the same needle they gave me an anti-sickness one before hand.when i was having it the nurse said i might feel a bit of an itch in my bottom ( well believe me it was my fuff that itched just for a minute you think i had worms ha ha ,like a prickly sensation. then the other one gave me a slight metally taste ( take sherbert lemons ) in my mouth. i once felt a little bit light headed as if you were gonna faint ,and she slowed it down and added a bit more Saline through the drip and i was fine ( never had that sensation again.The red one makes your wee red but drink plenty to flush it out and by the next day it was normal colour.By about 7-8pm i got so tired i couldnt keep my eyes open and used to have an early night ( i felt i used to sleep most of it off )the following couple of days i can only describe it as being pregnant ( just a bit delicate ,going off certain foods and drinks and slightly nauseated but take the sickness tablets they give you and if you are actually sick dont suffer in silence ( ask for Emend) its brilliant and never felt the least bit nauseated after that.a day or two after i used to have a flushing of my face and neck for a day or so ( i looked like a turkey cock) and my neck used to feel a bit achey and stiff( but nothing unmanagable and i still managed to do my daily routine and cook ,clean etc .sometimes my eyes were a bit itchy but my oncologist said I could take anti-histamine for a day or two for this but never needed to as it eased off itself and not too bad.just rest when you need to and eat what you fancy .i found light snacks before and after chemo better and lived on cream cheese and crackers and drank tonic water.then 2-3 days after i used to stuff my face and couldnt fill myself cos the steroids made me hungry.Another tip is try and take your steroids befor 4pm cos they make you hyper and you wont be able to sleep ( you'll be up all night ironing or something ha ha.from about day 3-4 i was back to normal I have included all the tips the other ladies told me about you wont need to do them all but have a read and hope it helps xxJulie you;ll be much better after your 1st one over its not as bad as you think I had 6 Fec like you and 20 rads Ps i also got a runny nose every time i bent down apparently its because you lose nose hair aswell so carry your tissues.if i think of anything else ill let you know
sorry i think ive just about wrote a book

As requested here's the compilation of all the top tips for going through chemo! A big huge thanks to all the contributors who have added their tips and to Princess for starting it! Please do continue to add your own top tips to this thread.

For the Gums:
- Bonjela
- Cordsyl daily for x 3 and Cordsyl normal for 1 (dentist recommended)
- ultra soft bristle brush/baby toothpaste
- aloe vera based toothpaste, Beverley Hills gum strengthening toothpaste.

For the mouth:
sensitive alcohol free mouthwash- Gelclair, salt water wash, Oraldene, tonic water, Difflam mouthwash
- aloe dent lip balm with lysine (good for coldsores also)

Bad taste: - pineapple (fresh/chunks/drinks/lollies) - haribo (not tangtastic) - celery, mints, fresh fruit, pear drops, cola cubes, sherbert lemons.

Water tasting odd: - flavoured/sparkling water, lemon squash tonic water

Nausea:
- Ginger (beer, biscuits, sweets, fresh)
- smaller, regular meals
- V8 vegetable juice
- Manuka honey with hot water and peppermint oil
- Slippery elm powder mixed into natural yoghurt
- Banana for early morning with the anti-sickness tablet
- Flavoured/green tea if can’t face milk or dairy products in tea.
- Lite bites suggestions – cream cheese and bread sticks
- Nothing spicey
- Flat lemonade
- Plain biscuits
- Banana/peanut butter sandwiches
- Travel bands/anti sickness bands (Poundland cheaper than Boots).

General Wellbeing/During Chemo:
- Carry your card and thermometer with you all the time and keep bag packed
- Chemo Caddy – see below
- Pin up emergency numbers where everyone can see them – who to contact and when
- Check with your consultant who to phone at eves and weekends
- Store emergency numbers in your phone
- Digital thermometer if not given one by hospital (Poundland cheaper than Boots)
– take temperature under armpit as more accurate
- Lifemel honey to boost white blood cells
- Drink LOTS of fluid before and after chemo - Lucozade for energy - Light meal before chemo
- If having CMF and nose issues when Chemo being administered then sweets or lolly (mini callipo) to suck during (small cool bag also recommended to keep lollies frozen)
- Bath pillow (helps prevent cold bald head on cold bath)
- Don’t take 2nd steroid dose after 2pm (awake/energised at wrong times)
- Eat fruit when you need to eat whilst/before taking tablets
- Avoid alcohol for 2/3 days after chemo
- Keep out of direct sunlight
- Pregnancy type diet to avoid risk of infection – ie no un-pasturised dairy products, wash veggies, meat properly cooked
- Accept help wherever offered!
- Prepare/buy nice food in advance for bad days
- Smash! When you can’t eat but must and mouth is sore! (Needs ketchup though)

Sleep when you can - Fresh air - Exercise - Laughter - Ask for help if really sick! Docs etc for additional drugs! - Steripen to sterilise water of nasties (works through UV and no nasty chemicals and easy to use but £90)

- Runny nose through loss of nose hair – tissues!
- V-pillow
- Check and see if GP can refer you to local leisure centre for cheaper use of fitness suite and swimming pool.
- Constipation - breakfast of high fibre cereal/fruit smoothie/prune juice - “Go Cake” – see below for recipe.

Sore Eyes
- Boots hayfever relief drops
- Cooling/chill eye mask

Headaches - gel pads (stick on kind used for infants/migraine)

Dry skin/rashes/spots from Taxol - gentle moisturiser for hands and feet - drink lots of juice and water but leave spots on face alone as skin sensitive.

Hairloss/head coverings
- buffs from buffwear
- baseball cap
- headcovers website
– sleep caps, scarves, bangs, eyebrows, eyelashes, wigs etc
- don’t wash it too often, use baby shampoo
- Browzings by Benefit – good eyebrow make up - Boots also avon blonde eyebrow pencil.

CHEMO BAG AND CHEMO CADDY
Chemo bag
(A bum bag has been suggested as keeps both hands free and no restrictions on your shoulders and particularly snugpak response pack (online) as “tested in war, never beaten” and big enough to take a tool kit/chemo caddy or chemo bag).

Keep a bag packed in case of emergency hospital visit and to take on chemo days. Pyjamas, warm socks, clean knickers, wash bag with spare toothpaste and brush, face wipes, mirror, tissues, bag of pineapple pieces, anti bacterial hand gel, book.

Chemo Caddy
A basket with a handle (previously from delivery of pot plants) with everything needed in it so that you can have it by the bed upstairs or carry it down to crash in front of TV.
- Edibles – ginger bics, minty chewing gum, root ginger to nibble.
- Treats – nice hand cream, chocolate, octopus shaped back massager, nail cream, buffer.
- Essentials – tissues, glasses, lipsalve, bottle of water, straw (in case can’t lift head from pillow), little bell (to summon family to fetch/make tea)

“GO CAKE"
4oz All Bran, 5oz sugar, 10oz mixed dried fruit (basically whatever is in the cupboard – use a nice mixture) – apricots, sultanas, cranberries etc, lots of chopped prunes for extra “GO”. ½ pint of milk 4 oz self raising flour. Put All Bran, sugar and fruit into a bowl, mix, add milk and allow to stand for at least half an hour (while you recover from the physical effort so far). Sieve in the flour, mix well and pour into well greased 2lb loaf tin. Bake in moderate oven (180 degree c) for about an hour, until a knife comes out dry. Cover with foil after 30 mins if its browning too much. Turn out of tin and cool. Serve in thin slices with butter as thick as you like it!

Once again, all credits to the ladies who have added to this thread making it an invaluable reference tool and thanks to Princess for starting it! Good luck and much love, xxxx

juliebtaurus
Re: starting my pink road of cemo, 15th nov

Hope your 1st one went well today yellowroses and heres hoping for not too many side effects .where abouts are you girls having treatment? Iam from Sunderland in the north east and we have a northern breast buddies group set up on facebook poppy so we keep in touch and have a meet up and lunch now and again to catch up . so i do keep in touch with others ive had treatment with.im also going in on the 9th nov to share experiences with others just starting chemo ( i was asked by BC nurse if i would help)so looking forward to hopefully help others through it.I took my monthly photo today of my hair its now 2 months since last chemo and i have about 1 inch fluffy growth on my head ( although its mousey with silver highlights ) ha ha.My eyelashes though are like carpet sweepers ( better than before) Cheryl cole eat your heart out.and i now have a reverse brazilian in the lady garden area.ha ha the joys of treatment. I was chuckling to myself today cos on one of the other posts a lady had just had her nipple tatoos done and had taken bandages off today,she works from home and was doing her computer work topless ( to prevent it rubbing) her hubby said she should charge more for topless work ha ha i thought it was hilarious xxx Julie

mrsbird
Re: starting my pink road of cemo, 15th nov

Hi, i will be starting my chemo on the 15th, 4 lots of ec then 4 lots of tax ( i think thats right, all a bit confusing at the moment, only got dx on friday!.
kerry xx

juliebtaurus
Re: starting my pink road of cemo, 15th nov

Hi Kerry good luck with yours i didnt have Tax myself but my chemo buddy did and a few extra tips from her was Nurofen for aches and pains ( bone pains) also if nails are discoloured through treatment wear dark shades of nail varnish to disguise them ( both my big toenails went as if id jammed them in a door but not painfull) and keep feet and hands and boobs/or scar well creamed with Aqueous cream ( it helps in preperation for Rads).remember you can get free prescriptions for 5 years fill the form out at your gp surgery and get a supply of this Lanzoprazole good for indigestion/heartburn,and keep them handy just incase. sorry but i keep remembering snippets of information xx good luck with yours Julie

horace
Re: starting my pink road of cemo, 15th nov

Just to say re ice/ice-lollies I took mine in a wide necked flask which I kept open in the fridge the night before-I packed it with fruit ice lollies [Tesco finest orange!] and they stayed frozen.I also put a bottle of water in the freezer and by the time I got to hos it had begun to thaw and so I could sip it when I needed to.I also recommend the dark nail polish.
Godd luck all of you-I had 4xfec and 4xtaxotere in 2006/7.
valx

Minny
Re: starting my pink road of cemo, 15th nov

OMG !!! Good job that list is not compulsory! I've suffered from pre-chemo brain since my teens and fear the real thing is going to make me a whole lot worse. I'd never remember what was in the bag, if i could remember where the bag was!!

I will be getting all the bits for the mouth. I do have dodgy gums and along with losing my hair, i'm worried about these two things the most. Note to self... go to chemist.

Hope you're all good??

Minny

juliebtaurus
Re: starting my pink road of cemo, 15th nov

oh dont even get me started on chemo -brain my daughter thinks im just about ready for a nursing home. we have had locks sawn off garage gates cos ive lost keys debit cards replaced cos ive left them in machines and walked to petrol station cos ive forgot to put petrol in car ( braindead or what !!!!)then mysteriously found them in my dressingown pocket ,the fridge ,the rubbish to name but a few of my favourite hiding places xx Julie

poppy333
Re: starting my pink road of cemo, 15th nov

hey
julie. u make me laff, and have such a briliant way at making me feel relaxed about the whole journey. be ace fo ryou to help put with people that are starting on cemo. and it makes good things come of this situation we are all in.

thanx for the cemo list, it seems long, but it well worth reading girls. so thanx for sending me that and posting.
x

Reeb
Re: starting my pink road of cemo, 15th nov

Hi ladies

Hope you don't mind but I could do with a mental hug.

I was hoping to start my chemo next week, so we'd be about the same time but I saw the onc today and it's going to have to be delayed -possibly for a few weeks. The swelling from the node clearance has been a b***er. I'm still having to have the seroma drained (they took off 500 mls again today) and they won't start chemo until it no longer needs draining. The appointment / start date had been fixed and I'd mentally geared myself up and now I just keep thinking when will it start and whilst I'm waiting what are all those wandering cancer cells doing.

Reeb

poppy333
Re: starting my pink road of cemo, 15th nov

hey reeb. im so sorry to hear yoru news, but at least they are getting the fluid sorted. not nice you got geared up to start. hope it ont be to long, and yoru still in our gang, so dont worry xxx youll have hair longer than us!! lol
kazx

SUZYB
Re: starting my pink road of cemo, 15th nov

Hi people, hope you all well....thanks for the chemo tips, it's amazing how differently it can affect different people and it's good to have tips beforehand
love to you all, I don't come on here every day as sometimes I just don't want to think about it, head in the sand and all that but sending you all love
xxxxxx

Minny
Re: starting my pink road of cemo, 15th nov

I'll give you a hug Reeb and hold your hand. I think i may be in exactly the same boat as you. Without knowing it, you may have answered a question. I had surgery 4 weeks ago and i'm still filling up. Mine was also 500ml and getting very uncomfy. In fact the seroma was as big if not bigger than my remaining breast. I wondered if they would start my chemo while this was going on, and i'll be prepared for it to be a NO ! At some point we'll be able to join in and probably be around the same time.

Take care
Minny

triphazard99
Re: starting my pink road of cemo, 15th nov

Minny and Reeb - I'm so sorry if this delays things for you, but I'm sure you'll be on the pink road soon enough. (((hugs))). Could you explain to me what 'seroma' is? It's the second time I've heard it now, and I'm guessing that it's fluid that still accumulates after the drains have been removed? Does everyone get it? I go in for mx next Friday - and I know i can ask at my pre-op, but I'm useless at remembering the 'right' questions (even when they're written down!).

Thanks, all of you.

Sophie xx

juliebtaurus
Re: starting my pink road of cemo, 15th nov

Sophie its a collection of the straw-coloured serous fluid either in the flap space or in the armpit area after mastectomy and /or node clearence.The fluid is normally drained away through the lymphnodes and glands but sometimes collects causing a swelling and pain because it pools in the tissues having no where else to go .In my hospital they dont remove the drain untill its draining 50mls or less in 12 hours.It doesnt happen to everyone and does eventually get re-absorbed but often needs draining untill it subsides.I fortunately didnt have this but its important to take the painkillers and do the shoulder excercises and massage aqueous cream into the area post-op to use the arm as much as possible ( but without heavy lifting) to try and prevent it but unfortunately it still sometimes occurs and can delay start of chemo. xxx hope this helps Julie

juliebtaurus
Re: starting my pink road of cemo, 15th nov

Girls you must read this old chemo post which i can definately relate too it had me crying with laughter xxJulie
http://www.breastcancercare.org.uk/forum/viewtopic.php?f=25&t=10215&p=465791#p465791

poppy333
Re: starting my pink road of cemo, 15th nov

hey girls.
im so sorry this can delay your treat,ent. but your still part of this thread as we have all have dx, and surgery around the same times.

pink hugs all round xx

Reeb
Re: starting my pink road of cemo, 15th nov

Thanks so much for the hugs - much appreciated

Even though it's been less than 24 hrs it's already filling up again. They're not going to drain it until next Friday as they're trying to force my body to find an alternative route for the serious fluid so god knows how big it will be then. Like Minny it was larger than the operated boob - I could be in danger of walking lop-sided by next week! I didn't have a drain in at the time of operation. My surgeon is very reluctant to use drains (infection risk) and had done some studies which showed that it didn't make much, if any, difference as to whether you develop seroma or not - seems to be a luck of the draw thing provided you do the exercises etc. It's just over three weeks since my op.

Anyway I've been Christmas shopping today as I decided I need to get it organised as soon as possible otherwise the OH will be responsible which could be disasterous but it was fantastic to do all the shopping and have someone else carry all the bags - afterall I mustn't carry anything!!

Thanks Julie for the chemo post, definately something else to look forward to.

Take care ladies

Reeb

millykins01
Re: starting my pink road of cemo, 15th nov

Hi poppy and girls
Just wanted to say I had my drain removed today but was in 2 minds as had a lumpectomy first then this mastectomy and with the first op my boob swelled & went green!!!!! BUT so far so good and no build up of fluid and very little seepage from the drain site so keeping fingers crossed my body will help me out this time (seeing as how badly it seems to be letting me down generally!!!!!0

I have my second results meeting next Fri 12th then should be starting chemo sometime after this but hopefully not too long as will be 8 weeks since first diagnosis by then and I'm not sure how long they can leave it til the effectiveness of the treatment is affected. I saw something about up to 12 weeks but not sure if that's from diagnosis or from surgery & if you have more than one surgery ????? my head is spinning now??????? - breath deeply

Just want to get cracking now as find the waiting hardest (like most people) - I add my thanks for the chemo post - I saw it before but didn't save it so am glad to have saved it on this thread now. Just fully expecting to get chronic munchies from steriods now I know about this. had no idea they gave you these & now realise why nurse laughed when I said I hoped I'd loose weight as she realised the opposite is liekly to happen!!!!!

Anyway - hope all nasty fluids get drained to their proper places soon & hugs to you all
XXXXXXXXXXXX

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