Starting chemo October 14

[Junash]

Linzz and AM Driver - just seen your replies - thanks so much - interesting that we get different info st different times - my onc was very eager to print out graphs and stats at the get go. They all work in their own mysterious ways.

Sue am assuming that you're now off your steroids - I only get 3 days worth - that may explain the fatigue. - 36.7is generally my average but I'm a chilly person and rarely reach 37 so I can't say yes or no to yours? Hope you feel better soon xx

[Junash]

Thanks Jingo and Laine - think I was getting so much negative into from internet thst I became obsessed with every minute detail. Went into planning memory boxes for son and getting my affairs in order BUT thankfully I calmed down very quickly - was in shock I think but now think why on earth shouldn't it be me that gets BC.

Jingo now you're just showing off with your fancy pants title! I've got your common old DCIS both breasts - always been run of the mill :-). Ok I'm with you - what's in front is good - I sometimes look far too ahead on outcomes and eventualities that I can tie myself up in knots. If they need to tell me something then they will - stage 1 2 3 or 4 - it is what it is. Thanks for sharing and I've got it all crossed for you - oh and a bonus baby at 43, you really did hit the jackpot!!! xx

[sue456]

hi ladies
im on day 4 first couple of days wernt great yesterday not to bad. but today very very tired. im now very flushed like im sun burnt just took temperature and its 36.4 . is that ok or am i panicking for nothing. sorry im a born worry. sue xxx

[Linzz]

Re staging, I’m one of those people who likes to understand as much as I can, it helps me cope. Other people are happier coping with the information they have to hand. Everyone is different. The first surgeon I saw wouldn’t answer any questions re staging, I had to draw every answer out of him. My lovely BC nurse then helped me see another surgeon (the one who ultimately did my op) and she was absolutely happy to explain the staging etc. I’m stage 3, grade 3. It was a big mother too.

Junash – if you had been stage 4 they'd have told you. I’m not sure if it would be a relief to find out if you are only 1 or 2 if you asked about it now, as you might be told 3, which might be scary.

Looking at the survival stats is a black hole to get sucked into, as everyone is different and there are so many factors to take into account it can be really difficult to be sure you are looking at the correct data. Which is no way to plan or live your future life. After my oncologist proved herself to be not so sympathetic or helpful I treated her to the “how long will I live?” question by way of revenge. This resulted in her slamming her pen down on the table in a fit of pique and then inputting my details into Adjuvantonline. I watched deliberately input a smaller tumour size than I had and then she quoted me some stats without any context. She then corrected the tumour size, saw the results change for the worse and clicked the programme shut quickly. As if I couldn’t see. She was not aware I had already registered for and used the system myself LOL.  I sure hope I don't have to see her again too many times as I don't trust her one little bit now.

I was upset about my likely stats to begin with but only in dark moments does it get to me now. From work I know how stats can be manipulated and how hard it is to make them meaningful. What do they say “Lies, damn lies, and statistics”. Like Jingo_x has proved with her baby (wow by the way!), statistics are there to be defied!

[AMDriver]

Hi Junash, I wasn't given a stage just a grade which was 3. I worked out that the stage was 2b due to the size and the fact that it hasn't spread. I wasn't given any survival statistics at all they said I would get that after the treatment is over next March, which seems along time to wait to me. They also said they are very confident of the treatment working, so I just have to go with that.....

On the nail front I can't see why painting them dark will help and you would have to keep taking the polish off to check on the state of them but I will see what I can find out. My sister-in-law is a. Oncology nurse in the USA, so I will ask her tonight.

[jingo_x]

Julie - re staging after all my own experiences and research this is what I know - the staging relates to tumour size, aggressiveness and if it has spread.  If it is in a certain number of the lymph nodes then you go on to be scanned thoroughly to check if there has been a spread to snother part of the body.  Based on my initial pathology I was stage 3.  My bone scan showed one single metastatsis in my sacrum and so for three weeks I had to deal with the fact that I was stage 4, but then another radiologist looked and said not sure, and another and another.  They try really hard to get definitive answers because chemo isn't always the first option for patients who are stage 4 - sometimes it is more important to stabilise bone etc,  but it isn't always possible to get a final answer and as it cant be biopsied I have to wait 12 months before they will scan me again to know.

I was obsessed with knowing exactly what stage I was but having had a few weeks of living with a stage 4 diagnosis I have now grown to enjoy the uncertainty more - I see it as my life line and have decided it doesn't matter so much to me now I just need to deal with what is in front of me and not down the line.  I think for all these reasons sometimes our medical professionals don't try and give us a fixed label that we then research endlessly.  I worked out my 5 year survival was 17% at one point, but it's not accurate because some bone drugs werent being used 5 years ago and also I am not scared of statistics as I accidentally got pregnant at 43 with my little bonus baby and apparently I only had 0.5% of that happening even if I had been trying!

All the scanning did result in them finding a different breast cancer in my other breast by the way so I now have the fancy pants title of 'synchronous, bilateral breast cancer' but apparently this doesn't have any bearing on my outcome!

[LainieG]

Hi Linzz. I have stubble so it's def grown but with lots of bald areas. I think the stubble is starting to fall out now tho as I seem to be developing more bald patches.

Julie I wasn't told what stage my cancer was but as far as I know stage 4 is when it's spread. I was told the grade ie how aggressive it is 1-3. Mine was grade 3 but luckily caught while still small so no spread.

Hope everyone has a week that isn't too difficult xx

[Junash]

Hello all and welcome to all the new ladies - sorry you've found yourselves here but looking forward to getting to know you.

I clipped my hair on day 14 i think but am now day 10 of 2nd FEC and still have my stubble - am assuming.that'll go at some point? In fact it feels like its grown? Eyebrow still intact as are eyelashes.

I've managed to get onto a LGFB session on monday, i rarely wear makeup so am looking forward to the session. A friend has bought me a gift voucher from Chelsea Brows - they do a kit - stencils and powder etc. For £35 - you can buy online or go to their outlets and they show you how to apply.

Reding about nails - will deffo be painting them dark - for someone that rarely wears makeup I'm getting into all of this malarkey.

Question: Cancer staging - when I was initially diagnosed i googled non stop in a very negative way, which was so bad for me, thankfully i have stopped all that. most people knew their staging? Eg Stage III or stage IV - which i learnt that this is BC that has spread. I've never asked the question and the info has never been offered? Did your onc or surgeon tell you? I was given my survival statistics by onc showing with or without treatment but not the staging?

[remel]

Had first chemo this morning.  All new and strange.  Have gone home with lots of different anti-sickness drugs, but currently feeling ok.  Even had a walk in the sunshine.  I am following all these posts about nails and had not realised that there was such an issue - does anyone know why painting them a dark colour helps?  I don't normally use nail polish and this is something that I had not thought about at all!

[Linzz]

Thanks Lainie, I’ve never heard of folliclitis so that’s really useful to know. If you have stubble now, it must still be growing? How does that work? My head is itchy, so getting a #1 or #2 should let me get at it with some moisturiser. Bettypoppitt my hair at that length will not only be shorter than my OHs but it will be greyer than his – I haven’t bothered with my roots for weeks now so all the colour will go. A truly scary prospect.

Welcome Robynv. I’m on 3 weekly, but on FEC right now as I think some others are. Sorry you’ve been so ill – some people are on the magical Emend – its usually something that has to be ordered specially, so if you want to ask them to let you have that next time you should get onto them well ahead of your next appointment.

[Robynv]

Hi lainie! So glad to know I am doing this right ! Couldn't tell if I was typing to the wind or if it was going somewhere !

[LainieG]

Welcome Robynv to our lovely group. You'll find lots of encouragement and advice and lots of new friends on here. Sorry you had such a hard time with your first cycle. Hopefully next time will be better. Like you and others on here I'm worried about my nails. I've painted them already and will be watching closely for any problems. Really, hair's bad enough without having to worry about nails too!! I'm on day 7 2nd FEC and the hair went around day 14-16 1st FEC. watching for eyebrows and eyelashes now 😕

[Robynv]

Anyone on the same time frame? I go every three weeks on the dot!?

[Robynv]

I just started on the 20th of October! Taxotere and cytoxan! Better this week but first week was a killer!

[Robynv]

Hi I am new to the board but I also read that and mine are getting painted as dark as I can find every time! I don't want to lose my nails! I have been told not to put your feet into the pedi bows at the spa but to only let them do a basic pedi during chemo due to germs stagnantly lying I. Wait to attach your chemo smelly feet! Haha
Robynv

[Robynv]

I just started on October 20! First two days were awesome! Went downhill quickly! By the following mon I was getting two bags of fluid and a big shot of adavan for dehydration, had lost ten pounds and could hardly hold my head up. Feeling sooo much better now. A nurse whispered to me and said just make a standing appt on day four to come in and do this again! You won't have to be so sick for a week next time! By golly that is exactly what I am going to do too!

[bettypoppit]

Hi Linzz and welcome Anx56 to our fabulous group 🙂
I'm on day 4, second cycle as Jingo-x. ..so day 25 i think. I had my shortish hair cut short a month before chemo started and then shaved to probably #1 (shorter than hubsters at any rate ;)) at about day 10, so early but time to get used to the new me! Today my scalp is shedding stubble...not the best look but i could not face handfuls coming out when i washed it, so for me it was the right decision. Lots of lovely ladies have gone down a different route mind..It's such a personal and difficult and somewhat distressing thing, but, i felt heaps better once decision taken...after a bit of a cry mind!
Feeling ok'ish...last of the ondansetron AS meds last night so now relying on the Domperidone and a jab from the DN...hopefully will then feel ok for some porridge :)....heading in the right direction I'm sure now. Oh and yes to headaches these first few days after treatment 😞
Take care all xxxx

[LainieG]

Hi Linzz. I was told only to use clippers on the head as to take it down to the skin can encourage or worsen folliclitis . I found this out AFTER taking mine down to the skin however! I've been fine so far tho and now have some stubble. Also told to gently exfoliate the head every day and use a moisturiser because faster renewal of cells on the scalp with chemo can cause thickening and drying of the skin. Hope this is helpful xxx

[Linzz]

Thanks for your quick response AMDriver - black spots on 2nd FEC huh? That makes me doubly worried now! Sigh

Anx56 - some of the ladies on here who are ahead of me have said day 14-18 for hair starting to come out and here I am on day 18 and yes its starting to come out good style now. Mine is thick to start with so I think I'll get a couple days more (including night out with the girls tonight - yay) but will prob be shaving it off at the weekend rather than watch it go bit by bit.  I do intend to lighten the mood by having my OH shave a Mohican into it before he takes the lot off. 

Ladies who already had shaving parties, did you take it down to skin, or did you take it down to a number 1 or 2? I'm not sure I trust my other half (or myself even) to take it down to the skin with no guard on the trimmer. Ouch.

[jingo_x]

Hi anx56 and welcome to the group, glad to hear round one is going ok.  I am on day 4 of my second FEC and was under the assumption that each cycle would get worse but have to say I have been slightly better than round 1 - although my sleep is rubbish this time around so I am missing that!

I still seem to have most of my hair, losing some every day but quite evenly so even if it does come out I feel I have givenmyself a few weeks to get used to the idea.

AMdriver no problems with nails but I was advised to keep roomy shoes on to avoid pressure on the nails so I have been living in trainers and walking shoes.  Toenails are a bit tender, but I am moisturing feet and nails every day too (and everywhere else really) with Boots dermacare cream - comes in a pot like E45 but has almond oil and lanolin in so a bit thicker.

take care all xx

[anx56]

Hi everyone!  I began my chemo last friday so Im day 7 today! Been meaning to hop on thread all week, but better late than never I suppose!  I hope you are all managing and we can share experieces, have found the forums to be a life saver!  Been okay had a few wobbles and some low days but cos feeling little better I'm trying to put it behind me!  Has anyone experienced bad headaches?  Also do the side affects get worse with every cycle?

With the nail situationI heard that a drip of tea tree oil under the nail tip every night helps, I also heard wearing the cotton gloves helps but be careful as they can harbour any infections.  As you say Linzz its worth trying anything in the hope it might work?

Can anyone tell me what day you start to experience the hair loss?  

Love and hugs to you all Xx

[AMDriver]

HI Linzz,

No I'm on the second lot of FEC, don't get to Doxataxel until Decemter. It wierd both the spots are in identical places on the tonenails. My daughter bought me some Sally Hansen Vitamin £E nail and cuticle oil which I used on my hands so have now started to put it on my toes - may be too late. I hadn't heard about cold mitts/boots so wil take at look at that.

Betty I will definitely take my meds as they worked for me last time and it was drummed into me - take them whether you are feeling ill or not. Hope you are feeling better.

[Linzz]

Hi AMDriver

Is it doxataxel you're getting at the mo? My nails are OK but I'm on FEC still, and I thought the taxane is the one that can mess with them most. I am really freaked out by the prospect of nail problems or loss and am going to enquire about cold mitts/boots at my unit. They apparently work like the cold cap, but for your fingers and toes. They are used a lot in France and Canada I believe but not so much in the UK.  If my unit doesn't do them I think I am going to create some DIY versions. Will look REALLY daft but I don't care

Also, I have been using Boots nail and cuticle oil since chemo started but have now bought some OnicoLife drops off the internet (some people seem to swear by them) which I will switch to before I start on the doxataxel. Might not make the blindest bit of difference but I figure it won't harm so is worth the try.

[Junash]

Morning all

Betty - think I've read somewhere that painting nails dark / black protects them? I'm going to google now and see if I've imagined that?

Snapper so sorry chemo has been deferred - can't imagine how frustrating this is 😞

Hope everyone bearing up x

[bettypoppit]

Hi AMdriver, glad your treatment went ahead and you are feeling ok...please don't make the mistake i made...take the AS meds as instructed even if you don't feel sick or nauseous. No change to my nails.. as yet! My breast nurse did mention getting them 'done' to help save them but i don't remember what it was? Anyone know?
Also, am i the only one amazed at how 'they' worked out that this poisonous cocktail of drugs works? I can't imagine trialing this regime!
Anyway good luck to all those still to have treatments this week...thinking of you all, hugs xxx

[AMDriver]

Hi snapper58, so sorry that it is so up in the air for you. I dreaded them saying I couldn't have my second chemo yesterday because I was hospitalized last week, but fortunately that didn't happen.

Had a terrible nights sleep but doing ok on the sickness and nausea front so far - fingers crossed it stays that way. My hair is still coming out but if you met me for the first time you wouldn't know, but I have developed black spots on the toenails of both my big toes....anyone else have that? 

I hope everyone is feeling better today and good luck to those who have a session today, thinking of you all. X

[bettypoppit]

Hi Snapper58, oh that is I'm sure very very hard to bare...but we are here to help you through this..there have been ups and downs for all of us, but we are getting through it. You certainly do need some answers and i hope you get them. Thinking of you and BIG hugs xxx

[jingo_x]

Hi snapper58 if you go to www.lookgoodfeelbetter.co.uk you will be able to see all the locations. Worth booking a session soon as I understand they don't often run inDecember as the cosmetics companies are buy with Christmas etc (or that just might be the case at my hospital)
Sorry to hear about your delay xx

[snapper58]

Thanks for the support Guys, I had a call this afternoon to cancel chemo again and need to see oncologist on the 6th Nov and if she thinks I'm ok then I will have chemo same day. I kept asking if my chemo would be ok and they said yes it'll be fine, I wished they'd speak to each other and I also want to know where the clot came from; ie mastectomy or chemo.

When I see the onc I'm ready with my questions but I know they're the specialists, I can se you are thinking of leaving the last chemo out but I am taking it all when they make their minds up.

Where do you book this feel good thing that you are all talking about, I need some therapy at the moment to keep me chin up. Sorry for those who's CC hasn't worked but plenty of other options to go for, I have also had people say you'll be fine and it'll soon be over. They ain't gotta a clue what it's like with all the appointments and the wondering we go through, they seem to think everyone is the same and until you are in this situation they won't understand. As you can tell hospital have got my back up with their call, sorry for the moan but hope everyone is doing well. Snapper58 xx

[Murphy1963]

Oh snapper, so scary, glad you are now home and hope everything goes ok for you on Friday. At least you left your hair at hospital - saved you running around with the Hoover at home for days on end whilst you shedded xx

Hi debtex, I also read that thread somewhere. I've also spoken to a lady in the august thread who has has 4 fec, that was all she was prescribed, and she had a similar diagnosis to us. I have also heard from another lady who was told the first 4 are the good ones and the other two are for back up. Who knows though!!! I was going to ask next week when I go but I think I'm going to go the full hog. The 7 January is etched on my brain as being the LAST ONE - can't wait!!!!!

Hi everyone else, hope you are all doing as good as can be expected. Been to see the oncology psychologist today re my vomiting phobia but I'm feeling pretty positive at the moment, so the appointment wasn't too traumatic. This time next week will be a different issue though, #3 is looming 😞

Love to all xxxxx

[bettypoppit]

Oh snapper58, thats pants but well done for coping so well with it all - really scary but well done for spotting the problem and getting help.

I'm having both AS meds & jab daily now so I've managed some porridge and chopped tons on a slice of toast - wooo hoo :). Mouth is disgusting but the lemon & ginger Tea is just about working.

Take care lovely ladies xxxxx

[Debtex]

... Vital .... !!!!!!

[Debtex]

Hope ur on the mend now snapper58 x . I read somewhere on this forum about a lady who didn't want her last chemo and was told my her onc that it didn't matter that much as it was the first ones that were viral . I'm very tempted to call it a day at 5 . Has anyone discussed this with their onc or any experience of missing the last one ?

[Linzz]

Oh my goodness snapper58 that must have been terrifying. So glad you're OK.

It's so useful to hear how people are affected by these treatments - hearing everyone's stories really focusses your attention on that dry list of "might happen" things in a booklet. Makes it real, even for me who am still feeling like this isn't really happening.

Lainie - how did I forget that only the Bru will Do !? I will be getting a supply in now

[Junash]

Snapper - sounds bloody grim but happy that you're home and on top of it.

Hope everyone else is feeling better.

Cold, wet and windy here - am talking about the weather but this could also apply to me at the mo! gurgly tummy from stuffing carbs in the last couple of days, can't stop eating bread for some reason.

[jingo_x]

Oh snapper58 what a nightmare, well done for spotting the signs and getting treated quickly though, scary times for you I bet.  

Now your treatment schedule has all changed as well so that must be frustrating.  

i hope you are managing to keep your chin up - not easy I know.

Bettypoppit hope you are feleing better today too x

[snapper58]

Forgot to say that I left the rest of my hair at the hospital, that includes the lady flower garden and all the hair except my legs  and eyes have gone. Snapper

[LainieG]

Hi snapper58. Sorry you've had such a hard time. That sounds really scary. Hope you're feeling a bit better now. Injecting yourself for all that time sounds awful too. Thinking about you and wishing you luck for Friday 💖💖💖

[snapper58]

Hi Everyone, Sorry I haven't been in touch but I was rushed into hospital last Wednesday with a blood clot in my lung, little bit scarey but I am back home know and on top of everything else I have to inject myself each day for six months. I missed my chemo and are due to have this on Friday, I'll have to read through all the other coments to see what's been happening with all of you. I hope you are all doing well and any newcomers that have joined this thread, with all the medication at the moment my appetite is going downhill and have been given somthing to help build me up before Friday. Love and best wishes to all. Snapper58

[Epicureankitten]

The best thing to do with the moonshine is to add the honey to your own taste. I don't like mine too sweet - I prefer it a little sharp - the pressed apple juice you can get in Sainsburys or Tesco in the chilled juice counter - it's just cloudy and not as sweet as clear apple juice x
It reminds me of the non-alcoholic mulled apple juice you get at Christmas markets - it's really lovely hot or cold x

I will get mum to let me have the ginger cordial recipe to share a bit later - hope you all have a good day xx

[LainieG]

Thanks for the recipe Kitten. I'll definitely try that out. 😊
Finally slept last night so feeling a bit better this morning. Drinking, of all things, irn bru this morning??? It's the only drink I can taste properly lol. Everything else is horrible.
Hope yesterday went well and you're feeling ok today dianexx1962.
Nice, bright day today. Might try to get out for a wee walk later.
Keep well everyone xxx

[Dianexx1962]

Morning lovely ladies x
First FEC yesterday all went to plan and ok it's doable !!
Fuzzy head last night but I've had a good night sleep with the odd wake up throughout the night x
I down 5 to go !!!! Can't believe the amount of meds I have to take , how's everyone been with the self injecting on day three for five days ???? Hope I can do this sure I will !!!
Hope all ok with everyone x x

[bettypoppit]

Hi Kitten, thanks for the moonshine recipe - it sounds good and i will give it a go...I'm definitely struggling to keep my liquids up this cycle.
i slept well over night - waking for just a moment every couple of hours. Still taking both A-S meds but sorry to say still feeling 'off side' so i will be asking the DN to give me the jab as well when she is here...who would have thought i off all people would be asking for another jab!!!
Hope everybody has a good day and it's great to hear that some are feeling better after their treatment. Xxxx

[Epicureankitten]

Nicnac - that sounds just like my week! Very similar - today was my first day I felt relatively ok and was out most of the day. Fingers crossed for round 2..... X x

[nicnac15]

Hi epicureankitten yes i had my first chemo on 20th upto now has feeling of sickness fist 4 days and was tired on sat sun felt fine this week managed a full day out with my 2 kids today. I think ive got away lightly with s effects god help me on round 2. Hope your feeling as good as can be. Xx

[Epicureankitten]

Ok lovelies - this is the Moonshine recipe....
(Cordial recipe to follow tomorrow) x x

Chemo Moonshine ( taken from an American recipe)

2 litres Cold pressed Apple juice
1 jar of natural honey
1 cinnamon stick
1 tbs whole cloves
1 cm piece of root ginger peeled and finely chopped
2 tsps ground ginger
1-2 star anise

Pour apple juice into a large saucepan or preserving pan. Add all the spices and chopped ginger.
Bring to the boil over a medium heat, then reduce heat and simmer gently for 10 minutes.
Reduce heat again and allow liquid to steep over a very low heat for 1 hour.
Add honey to taste. I found that 4 tbs was ok but depends how your taste has been affected by chemo.
Stir until honey has melted into the liquid. Turn off the heat and allow liquid to cool.
Strain through a very fine sieve or muslin, bottle ( I pour mine back into the apple juice carton ) and refrigerate.
Can be drunk warm or cold at any time.

[Debtex]

Hi all . I would love recipe for chemo moonshine plse . I can't face tea and coffee and bored with plain water . I drank tons of vimto last week but concerned I will damage my teeth if I keep doing that . This is my 2 nd wk after fec 2 and I feel good but only have a thin thatch of patchy hair despite Cc . I find I am getting sleep problems something I have never had before . Next wk will be my riding week although I will have to find something to wear under my hat now my hair has gone . Maybe a head scarf in the 'royal way '!! Hope everyone having treatment this week stay safe and sane ! Love to you all Deb x

[bettypoppit]

LainieG, i had terrible time sleeping 1st cycle, but oncologist told me to ensure i took 2nd daily steroid NO LATER than 2pm and that should help..just in case that helps xxx

[jingo_x]

Hi AMDriver still not losing much hair and sore scalp has disappeared.  Did the cold cap again yesterday and the nurse did it differently so my head was much wetter and colder plus I ended up wearing it for a total of 5 hours so my head was completely numb.  Had a sore eyebrow for a couple of days too so waiting for that to fall off now!

re the drinks thing I am drinking pints of Rocks Elderflower squash mixed with fizzy water, also Fanta Orange zero and loads of cups of tea.  Also have Pukka Lemongrass and Ginger Tea when I am feeling queasy.  Can't face much water 

I am doing LGFB at The Rose Centre St George's next Tues 4th Nov - anyone else happen to be signed up for that?

I hope everyone who has had a bad start to the week is feeling better.  Day 2 of my second FEC has been good, but from my chemo diary I can see that day 3 might be more of a challenge!

Take care ladies xx

[Junash]

Kitten - yes please to both recipes

Hope all have a peaceful night and get some decent sleep xx.