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September 2019 Chemo Starters

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Re: September 2019 Chemo Starters

Hi AnnaGabanna, I don't know how old you are, but I think if you are post menopausal then you can have Zoldronic Acid. I had it alongside chemo and on it's own since I've finished chemo. It is a bone strengthener and my onc said it helps to prevent bc going into the bones and with a recurrence.

I hope your next session of chemo goes well x

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Re: September 2019 Chemo Starters

Naomi40, just wanted to reassure you about the PICC line, I couldn't feel it being done and had no problems with it. The downside could be that you have it flushed every 7-10 days, but I didn't mind that, I found it quite reassuring to go back to the unit in between chemo's x

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Re: September 2019 Chemo Starters

Hi Naomi40,

 

think its me you wanted to message re picc line.... i know what you mean re ' chemo fog/head ' 😆😆

 

the picc line is inserted into a good vein which they find via a scan.  It goes along the vein  under arm pit and ends up above the heart.  Sounds a bit daunting and believe me i was sooo worried,  but its not to bad.

i found the local anaesthetic jabs were more painful than the procedure itself.  But they dont take long then its numb...

with a picc  you have your chemo drugs and blood taken thru this, and also any meds you may need.  No more cannulas 👍👍

picc line just needs flushing through and dressing changed once a week,  its so easy.

hope this helps you decide.. mini mad xx 💖💖

 

 

 

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Re: September 2019 Chemo Starters

I probably didn’t even reply to the right person then. I find with my 2nd chemotherapy under way I feel so much more disoriented and forgetful 

Member

Re: September 2019 Chemo Starters

Hi Bonnieb 

 

Thank you for replying. 

 

How do they insert a picc line, was it painful at all and how do you manage with it?

 

Naomi 

Member

Re: September 2019 Chemo Starters

Hi Bonnieb,

 

i had a PICC line fitted,  my veins where awful so if you want to ask anything please do so.

mini mad Xx 💖💖

Member

Re: September 2019 Chemo Starters

Hi Shi, hope you are well.

 

I’m hoping it’s because I didn’t drink enough water yesterday and that’s why it was like that. I really don’t want a picc line if I can avoid it.

 

 I have been advised to stay clear of anyone with a sore throat or a cold so I am back at my own house now 

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Re: September 2019 Chemo Starters

Naomi, sorry your 2nd fec not gone smoothly today. I’d speak to your unit about your mum having a cold and get their guidance and also use the ask the nurse facility on here if there is anything you can do to minimise any risks, please keep safe 👍Shi 

Member

Re: September 2019 Chemo Starters

Round 2 of fec chemotherapy today and it was a nightmare. Right from the start the treatment stung and my arm hurt, and then it was going a lot slower than 3 weeks ago and in the end before the red one was done I needed a new cannula in another arm as the pain was getting worse and even then that wasn’t much better than the other arm ☹️☹️

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Re: September 2019 Chemo Starters

@minimad and @jencat sorry for replying really late. Yea zolendronic acids are biphosponates so it will not be offered to me and it is for the bones and not oral chemo. It is disheartening being diagnosed with something that can't be treated with hormone or protein therapy but like what SusieB said the advantage is TN responds really well to chemo❤️ 

@Beryperyl glad you're feeling better❤️ I am dreading my next cycle of carbo and pacli as the chemo nurse said I took it like a trooper the first time that I might have worse SEs this time around.

 

Member

Re: September 2019 Chemo Starters

Morning everyone 

 

I have a question. I’ve been staying with my mum for abit and I’m about to have my 2nd lot of fec chemotherapy today. My mum has just come down with a sore throat and a cold and even though I know I probably should stay away, I’m guessing I just want to be 100% sure that I should stay away until she’s better 

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Re: September 2019 Chemo Starters

Bonnieb ❤️Glad you are having better day. Don’t try and battle through do always ring your unit if your antisickness meds don’t work. Yes once you get your diagnosis it all move quickly and it seems like you have a season ticket to your trust. Try and look at it like the grand national and every fence you leap over is closer to 🛎🛎🛎🛎time. I’m sure someone will be along to offer advice on the pic line. Also please use the ask the nurse or someone like me options on here too. Your team has seen and done it all before 👭👭 it’s easy to be 😳but please trust and speak to your team, they will care and support you through the journey ❤️💕💕✨✨Shi xx

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Re: September 2019 Chemo Starters

Berylperil 👍👍over 1 that’s great news on the neutrophils 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻Bit extra for the bloods dance (May17 threads special magic trick) for getting bloods up 😁it always works 👍hope you get home tomorrow ❤️💕💕✨✨Shi xx

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Re: September 2019 Chemo Starters

Clare, try not to worry about the PICC line. I started my chemo in Oct'17 and had to have a line fitted, which I was really nervous about. It was fine though and I didn't feel it being fitted and couldn't see anything either as I was covered up with a blanket x

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Re: September 2019 Chemo Starters

Hi

Thank you for your lovely posts. Really appreciating the friendship and support of this forum.

 

By way of an update I am now on the oncology ward.  It's much quieter than the hectic medical admission unit I was on. My neutrophils have made it over 1, and my temperature has settled down. Looking good for getting home tomorrow. 

 

Sam, you are sooo cool, how I  wish for your confidence and to be able to walk down the street with my thinning  spiky hair,  a  defiant chin held up!  We'd look the pair! 

 

Anyway, ward light's have just gone out. Looking forward to a new week, being at home and getting better. 

 

 

 

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Re: September 2019 Chemo Starters

Hi 

I had my first treatment of fec on Wednesday last week , I have to admit I was scared. Diagnosed in May and it’s just been a bit of a whirlwind finding out all the things that have to happen . First treatment I didn’t think was too bad until in the evening , overwhelming nausea . Have had a couple of really bad days but feeling much better today . Have to have a picc line fitted before my next treatment as veins too difficult to access and I have to admit I am a little worried about this .  Really pleased to be able to ask any of you for advice . 

Clare 

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Re: September 2019 Chemo Starters

Sam I used the beauty despite cancer scalp care kit. I’m a girl but I passed it onto a gentleman who was starting chemo as I was finishing because he was having trouble with his scalp. Any scalp issues any of you get your units to have a look ring rapid response, during chemo you have to be vigilant of everything please keep safe ❤️💕💕✨✨Shi xx

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Re: September 2019 Chemo Starters

And it was tomorrow on cycle 1 when ended up in hospital so, although feeling great today somewhat apprehensive re hospital "anniversary" tomorrow....

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Re: September 2019 Chemo Starters

Beryl

Soory to hear you're in hospital and its not good in there....
Look I know you're my cosmic twin and all but you really didn't need to follow my lead and end up in hospital with a high temp! Am really surprised you're on a ward as when I was in the same predicament as you had neutropenic sepsis and needed to be kept in protective isolation ( so private en suite room), not sure why you'd be any less risk of getting infection & sounds like your counts are lower than mine were. I would bl00dy hate to be on a ward.
Demand an explanation!

 

Very impressed, a conference presentation, good luck!

 

Am really happy with hair post a sorting out by the barber, I quite enjoy sashaying away with my new "hairstyle", also am enjoying staring out those who stare or waving or saying hello...I love embarrassing people SO MUCH!
Barbers are sad places though, no chat like in ladies hairdressers and seem to be run my miserable g1ts who don't take pity on poor (able to be pathetic on cue) cancer sufferers going through chemo...won't be going there again! No chance of a freebie.
It is however, even in the balmy south quite chilly, do bald men get slowly acclimatised as they lose their hair slowly I wonder? Also needing to get top tips from my (bald from 20) father as to scalp maintenance- who'd have thought eh?

 

Go for the wig, as a tight northener who gets a thrill from shocking others wig never an option, am sure with my clumsiness it would end up cock eyed or back to front or rolling down a street in front of me. Given it will most likely start growing back when move on to paclitaxel in Nov happy to save £s and wait for my 4th hairstyle in one year! How exciting...

 

I've had no side effects from injections and very few from EC this time, and let's face it round 1 wasn't too bad either (as had a much better hospital experience than sounds like you're having) so consider myself very lucky indeed...and long may it last. Really annoying aren't I..sorry!

 

Weird craving too..how odd the effects we get. Am eating much healthier than before as its just what I fancy, I have however totally gone of alcohol (was quite a lush previously) and my favourite bad food, pizza which is quite sad all round, but also very good for me I guess. Nothing quite as odd as yours however.

 

Hope you get out soon (I was in Monday night till Sat pm until finished cycle of IV antibiotics and they were happy temp had stabilised).

 

Sam X

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Re: September 2019 Chemo Starters

Berylperil 💪💪💪Hang on in there it’s frustrating when your neutrophils are still low after they do your bloods every day, but they will suddenly whoosh up 👍👍 have you been having the jabs to help boost you? What day are you in in your 21 day cycle? It does send you 🤪🤪🤪see if there is a side room available it will at least help you get some sleep ❤️❤️After my op I had a side room it was lovely and quiet and when I was in for my 6 day stint after chemo 1 I again luckily had a side room 👍worth asking if ones available 😘 Hope you’ve a good trust on the food front 👍mine was blooming fantastic, again very lucky 😘😘 now mission for tonight/tomorrow is do the macerena as you go to the loo, extra points if you can get any others to join in 😁😁😁😁😁 update required please 😘😘💕💕✨✨Shi xx

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Re: September 2019 Chemo Starters

Still in hospital. Feeling sleep deprived and emotional. Ward is so busy and noisy. The nurses are lovely, but run ragged.  My temperature won't stay down and my neutrophils are still very low.  Sorry to be so negative, but round 2 is proving a tough one, and I have to admit to feeling scared and vulnerable. Hope tomorrow will see me turn the corner. 

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Re: September 2019 Chemo Starters

I think they are giving me the Zoledronic acid as i am older (69) and because this is my second TN bc in 2 years.

how long is your pac and carbo going to be for ?

i had pac every week for 12 weeks and carbo every 3 weeks for 12 weeks.

mini mad xx 💖💖

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Re: September 2019 Chemo Starters

Silly girl me. Spoke too soon. Spiked a high temperature overnight and  now in hospital and  on iv antibiotics. Count so low lab machine can't calculate. Bl00dy fed up now. Apparently this is the carboplatin doing it's worst. 

Keep you posted. 

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Re: September 2019 Chemo Starters

Hi Anna,

I'm from the Oct'17 group and TN like you and Mini Mad. I had Zoldronic Acid alongside my chemo-every other one and then 6 monthly for 3 years. (my last one will be next August) I think how long you have them for seems to differ, I'm sure I read on a thread someone having them for 5 years, but maybe she didn't have them during chemo as well x

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Re: September 2019 Chemo Starters

Hi Naomi,

 

i had the markers and they didn’t hurt a bit - just a sharp scratch for the local. 

 

Also had the shin shin and rib pain - was at its worst whilst I was doing tummy injections and not so bad now. Round 2 on Wednesday 😜

 

xx

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Re: September 2019 Chemo Starters

Hi Kattz 

 

Aw bless you hun x My one fear was lots of my hair falling out as it was long and thick so I took the decision for the Sinead o Connor look before my treatment started as I was hoping to find it less distressing for me and my children. 

 

I decided against a wig but I picked up some hats to wear. I find myself wearing hats around the kids now so that they don’t see the patchy parts where my hair is falling out.

 

 I too have my 2nd treatment on Monday, I have to have breast markers put into my tumours first and am not looking forward to that, I’m afraid it will hurt. 

 

And I get panicky because I keep experiencing discomfort in my ribs and my shin and I imagine the worst when it’s probably just aches and pains.

 

Sending you hugs for your treatment on Monday 

 

Take care 

 

Naomi xxx

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Re: September 2019 Chemo Starters

Hi Mini MAd,

 

TN myself and only started paclitaxel and carboplatin second dose of taxol yesterday 😊  I know I still have a long way to go but just curious wether they do offer zolendroic acid for post active treatments? 

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Re: September 2019 Chemo Starters

Hi Louise,

 

ive jumped in from the June 2019 Chemo posts.

 

i am also Triple negative and had my last Paclitaxel and Carboplatin 5 weeks ago.

yes, i know what you mean when there isnt any further treatment,  its scarey...

i am having Zoladronic acid iv infusions every 6 months for 2 years.  My next dose is in January 2020.  It strengthens the bones and hopefully prevents any recurrence.

hope you are coping with all this....  take care.    Mini mad xx 💖💖

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Re: September 2019 Chemo Starters

Hello Ladies, 

 

Sorry gone quiet, but am ok, energy levels sunk, and just doing very little with this cancer gig is a full time job! 

 

Sorry to hear you've been in hospital Katy, hope things are  on the up. 

 

Sam, cosmic twin, got your second round in with your new line, good woman! The horrible GCSF injections I think are the saving grace for  the white cell count,  worked  for me last time. Beware the bone pain and headaches. I also think the injections have an effect on my bowel too as I have swung from constipated to diarrhoea, oh joy! 

 

The hair thing is mean, my sinead  O'Connor is now distinctly patchy...  I am going to revisit the wig.  There are moments when I want to  have some hair to not look like the woman with cancer such as open days visits at  new schools with my teen.  I am going to do a conference presentation and a bit hair might give some confidence to make up for my  dodgy chemo brain worries.

 

How's the taste situation going, mine is foul. Became obsessed that my family were sugaring my tea, now my world is just bitter. Have had odd cravings, including for the slice of gherkin in a McDonald's. Fortunately I live in the sticks so no Deliveroo options to meet my weird fantasy cravings!!

 

 The mood thing, I have gone from  feeling  really ok to tearful to raging. My family can't keep up!  They are praying for normal service to return! 

 

Stay well ladies x

 

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Re: September 2019 Chemo Starters

Hi Naomi,

I’ve got my 2nd EC on Monday and my hair started to fall out on Tuesday. Embarrassingly I was sitting in the dentist with the kids and my 10 year told told me I had all hair down my back! I quickly stuck a hat on! It seemed to happen very quickly from then so I decided it was time for it to go last night. I was more concerned about how the kids would feel although I think the wig seems weirder to them than my  Sinead O’connor.

 

Have you got a wig or scarves sorted Naomi?

just keep telling yourself it will grow back. Also, with it coming into autumn and winter we’ll be able to wear all winter hats and just look part of the crowd.

k xxx

 

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Re: September 2019 Chemo Starters

Due to have my 2nd fec chemotherapy on Monday and today I found a little bald patch on the side of my head. And all I could do is cry even though I knew it was going to happen 

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Re: September 2019 Chemo Starters

Thank you Shi

Louise

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Re: September 2019 Chemo Starters

Hi Louise, I was tn 2017, nothing else given after finishing rads. Now 2019 and all ok 🙏🙏thank God. I know there are some other tns who have had zelondic acid I think and also there are some trials for tn people finishing their treatments, so check cancer research website and also ask your onc if you can go on any. Hope this helps 💕💕✨✨Shi xx

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Re: September 2019 Chemo Starters

Anyone here with Triple Neg and about to have their final session of Docetaxol?

 

Have you been told if you will go on tablets afterwards - if so which ones?

 

I've been told Triple Neg patients dont get given tablets.  Seems a bit scarey having nothing else.

 

Many thanks

Louise

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Re: September 2019 Chemo Starters

Kate from Leeds (my lovely old stomping ground!)
Nice to read you sound like a similar "trying to be organised" person, I too take notes as to what's going on so I can keep up with news, my way of being in control with this whole cancer lark, I have a book for ailments, diet, temp, sleep, side effects...sad thing is that I actually struggle to read my rubbish writing! But I do know what to expect...

A lot better on the 2nd EC vs the first still ta, think the pre-emptive dulcoease is proving a jolly good idea as not really doing anything else differently, or could be due to the FSG (or whatever the blummin letters are) injections to increase white blood cells? The operation was to install a port (port-a-cath) to make the taking of bloods, delivery of chemo etc easier as my veins were not playing ball and at the last chemo were collapsing all over the place. It will mean I also don't look like I've been self harming hands & arms that were covered in bruises, am such a delicate little flower (I jest).

Your journey sounds like you're following me, I was in for neut sepsis following 1st EC, suspect they may send you home ,as they did with me, with syringes to (very easily) inject yourself, I am hoping they will prevent a visit to the lovely ladies at Epsom general next week when have low immunity again...fingers crossed for both of us. Mind you, apart from wanderers in the wee hours you may be enjoying some peace & quiet away from your kids?
Unlike you I don't seem to have any mouth issues, other than being off alcohol (the smell of white wine makes my stomach turn) and not being able to eat my favourite stinky blue cheeses my taste is broadly same as pre chemo, luckily though have a hankering for all things healthy! (Quite worried that some ice cream I have in the freezer will run out of use by date...as a tight northener I abhor waste!).

 

Naomi
I applaud your honesty, and its quite difficult to snap at people on here - so give it your best shot! No-one (especially me) will take offence even if you succeed..
You should, if you can, use this medium as an opportunity to vent. We're here to listen, support & tell you you're wrong if need be!
And no need to apologise, not everyone can have verbal diarrhoea like I often do. You join in when you want. Do know what you mean re memory, I am getting to the stage where I am taking notes on everything (see above) and it's getting to the stage that if am downstairs and need something from upstairs need to say it over & over again on the way upstairs so don't forget why I've gone to the top of the stairs. Post it notes are rapidly becoming my best friend.
Hope you're doing better with them injections, I didn't fancy doing it but just get on with it now, helps having a large spare tyre to aim for.

 

Beryl
Hope you're doing well twin!
See below re hair, am more hoping to chanel Charline Theron re mad max fury road, just without the grime on my face. My boyfriend has however told me I'm more Brian Glover.
Can't be ar5ed with wigs, caps will be my pal, plus au natural when needing money/sympathy of course.

 

All,
Following lots of moulting got the boyfriend to bring round clippers last night and now resemble a day old baby bird, apparently my hair was not suitable for the clippers (of course)!! So off to the barbers for a bit of a tidy up later...lets see how much sympathy I can garner, bets on a freebie anyone??
(Tam tam - tried cold cap & it didn't work for me but I'm a big believer in nothing ventured nothing gained)

So does anyone have anything planned at the weekend? All being well am seeing some northern pals who are visiting the smoke, if am good (which I WILL be) doing afternoon tea (the lushes I am with will have the champagne option, Cinderella here will do with mere tea...boo!).
Hope its a good one for all.

Sam X

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Re: September 2019 Chemo Starters

Hi all,

 

 I have to apologise for not replying to any replies to my posts. I plan to and then I forget what I was going to do.

 

 I hope everyone is doing okay.

 I find myself being slightly irritable about nothing in general just I have to remind myself to be silent so that I don’t snap at anyone 

Member

Re: September 2019 Chemo Starters

Hello

 

Day 8 and just waiting for  pac dose as of the moment, bloody pharmacy is taking ages! I had my first dose of carboplatin + pac last week and was ok apart from day 3-5 where I was having severe joint pains 😩 but co-codamol eased it off went back to normal by day 6-7.

Hope everyone’s doing well ❤️

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Re: September 2019 Chemo Starters

Hi Naomi, 

I’m Day 13 so pretty similar time line. Second week has been a lot better food wise. Eating ok, still enjoying odd treats like cake/ chocolate but the crisps have disappeared😭😭Jeez they wreck my mouth! 

Hospital food is ok and portions small so eating them and snacking in between x

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Re: September 2019 Chemo Starters

Evenin’ All!

 

Ive been so rubbish at keeping in contact with you lovely lot but I do read regularly and now I’ve had to make notes to keep up with what’s  going on so forgive me if I miss you. Things change so bloody quickly on hear! It’s only because I’m writing from the luxury of a hospital bed that I can catch up, I’m normally bushed at home once I've got the kids to bed 😴They drain me on a good day! 

Beril Peril

i hope your 2nd round was a breeze on Thursday. Did you decide about a wig? I’ve gone for one , yet to collect, and after the amount I’ve paid I’m going to bloody wear it. 

Pink Flamingo

How are you doing? Temperature down? I would get clarity from your oncology nurse as to what you are to do. You’re an oncology pt going through active treatment for goodness sake! 

 

Sharon

hope you’re doing ok xxx check in with us if you’re up to it.

Mimbles

Hope you’ve had a good week  and are feeling ok with minimal s/e🤞

Sam

hope you’re doing ok after 2 EC , I think we might be the only EC ladies?

what op, are you having ? Have I totally missed something in my crazy note taking? 

 

Maybe its EC but similar to you I am now enjoying the delights of the nhs . I have my own room and en-suite too. I’ve brought all my pamper toiletries, room sprays and ear plugs(absolute necessity)!

 

I rang up Thursday with pelvic pain ( from which I’ve had a previous admission so I New exactly what was brewing) and they reluctantly booked me in for assessment even though I presented with obvious painful cramping but no temp! Gynae weren’t interested as I was now oncology and as I had no temp after 6 hours of waiting to see the consultant they were going to send me home. Although they didn’t retake my temp to chec in those 6 hours. I, yes me, asked them to as they were about to send me home. 38! Things changed within minutes, that was Thursday and I’ll be here until at least Monday 🙁

Im now classed as neutropenic and still got this pelvic pain which I think has started the whole bloody thing . Got U/S on Monday. Jeez, I’ve only just started on this chemo crazy joy ride, just hoping this is a blip 🤞🙏🤞🙏

 Sleep well tonight ladies.... I had an old dear wandering into my room at 3 am, she was very confused bless her. 3 nurses then followed with phone torches trying to be quiet , but failing miserably , looking for spillages?? 

 

Top tip.... ear plugs if admitted to hospital xxxxx

 

Katy xxxxxx

 

 

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Re: September 2019 Chemo Starters

Good morning everyone or probably afternoon really 🙂 How is everyone today?

 

I’m day 11 into my 1st chemotherapy treatment and I find myself eating more than what I normally would. I eat the normal breakfast lunch dinner etc but find myself occasionally needing a sweet or savoury snack in between my meals. It’s like feeling a bit lightheaded and then a little snack helps, does anyone else find they experience this?

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Re: September 2019 Chemo Starters


Had 2nd EC last week so on many, many pills now..organisation of my daily timetable takes so long(will put it down to chemo brain rather just being generally disorganised of course).

 

Went for PORT fitting pre assessment also last week, veins are generally quite rubbish resulting in multiple attempts to remove blood and give IV, chemo etc. PORT seems like a much better option than PICC having spoken to many people so in one way looking forward to it. The downside is that as am an MSSA carrier need to wash hair and shower in some delightful red gunk and shove stuff up my nose three times a day...joy!
Oh and the op next Tuesday is a little disconcerting, having never had an operation before this will another one for the cancer adventure bank...


Had a northern pal staying last week so managed a couple of v enjoyable nights out as well as a chemo pal, funnily enough she refused my offer of her trying some, you know, just for fun, most disappointing indeed.

 

Actually feeling much better than post no 1 EC, am putting that mainly down to the fact that chose not to have a takeaway pizza following this EC...showing I can be sensible after all!

Out for lunch tomorrow hopefully with another couple, back up plan if am feeling pants is the boyfriend provides a picnic in front room ( rubbish weather forecast tomorrow) so fingers crossed still feeling good.


Based on no 1 EC next week will however be a different kettle of fish re SEs so will make the most of this weekend.

 

Hope many of you also having a good weekend

 

Sam X

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Re: September 2019 Chemo Starters

Firstly replies to those posting last week, been vv busy, it's a real time consumer this cancer shinanegan isn't it??

 

Beryl
Again cosmic twin have been losing hair at similar stage, not coming out in clumps but severe moulting for past few days with one bald patch that am able to disguise so far...so don't think am far behind you...
Funny didn't have any scalp tenderness/tingling like many here..will put it down to my 'pain free superhuman powers' that could be my downfall at this rate!

 

Mermaid
Am joining you on the GCSF injections, another step on the cancer adventure, but probably better than ending up in hospital again I guess (despite it being quite fun). God luck!

 

Hazel
Am on different treatment than you but also had a very much up & down 2nd week, take it easy!

 

Hope everyone else is doing well

 

Sam X

Member

Re: September 2019 Chemo Starters

Hi I’m Hazel and I started chemo in 4th September after an oncotype test came back suggesting chemo would be beneficial. I had grade 3 invasive ductal, lumpectomy in July no nodes affected. First chemo was daunting and took 5 1:2 hours due to staff shortages. No sickness yet as have been taking tablets regularly. Very tired into second week which even though I read about it didn’t expect to be so bad. Worse thing is my hair it’s shedding quite a lot after just two weeks and although I’ve cut it shorter now I think I need to get it shorter as I can’t  cope with the constant falling out. Due next chemo next week as having 6 rounds of fec-t. No other major side affects as yet do fingers crossed but am prepared. Hazel 

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Re: September 2019 Chemo Starters

Hi

Stepping out for 2nd round chemo today.  Feeling really well at the moment which while giving me confidence to go and do battle again, there is also is ughh in that I am going to have all the sick and grotty symptoms back. But I have said to myself, it's a positive thing to getting treatment, get cycle 2 in the bag and you are a third of the way through. 

 

On the scalp conversation, I reached scalp tenderness peak at day 14 and this was the start of the big fall out. Day 15 was a cry in the shower as the handfuls of hair are distressing, and even though you know this is  coming it's still a hard kick. I honestly felt better when I had it gently taken off, it relieved the scalp tenderness significantly and yes I too felt that I had taken some control. Its  these small moments  that feel  pretty powerful. I have also started taking a bit of time to select and do different things with scarves and with some some success and nice compliments. I even dared to put my girl guide knots to the test with a ride out to the coast in my mx5 with the roof down, hurrah!  I might relook at the wig option having not bonded with first effort, but I will see how I feel at the back end of this 2nd cycle. The weird thing about this wig vs. scarf is the one thing that has engendered the most opinion in my friends with polar views on what I should and shouldn't wear!  Funny old business this sometimes! 

Over and out. 

 

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Re: September 2019 Chemo Starters

Hi Pink flamingo

 

My hair has just started falling out and I have an area of my scalp that is a bit sore, at hospital tomorrow for pre chemo tests so am going to ask about that. Have decided tomorrow is the day that my hair gets shaved off, think it’s going to hit hard but it’s not nice getting a handful of hair when you run your fingers through it! Get the feeling my husband and son aren’t really in agreement with me as my hair still looks ok but I’m taking control 💪💪. This is 16 days after first FEC

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Re: September 2019 Chemo Starters

Evening everyone,

 

currently day 12 since first cycle of FEC: interesting weekend - woke up on Saturday feeling ready to take on the world almost to the point of mania/ hyperactivity 🥳🥳 Sunday back down to earth with a bump feeling dreadful and pretty certain I had urine infection brewing but no temp - all fitted parameters to make an urgent call to my unit only to be told “probably a touch of cystitis- ring 111”. Surprised I did as instructed only to have the lovely 111 lady check twice that this was what unit had told me to do. Anyway saw out of hours doc later that afternoon who confirmed I had rip-roaring infection; prescribed antibiotics and packed me off. 

Yesterday evening, my unit rang to see how I was (good) I reported that my temp was 37.4, still had burning sensation and now also throbbing ear. She told me to ring my GP if it didn’t improve in 24hrs. Fortunately it has improved but the whole episode has left me wondering why they bother giving the initial written advice about when to make an urgent call. 

Anyhow - today, my scalp feels as though I’ve left bleach on too long!! I haven’t bleached it at all but that’s what it feels like 🔥🔥 - should I expect to wake up to a hairy pillow? Is this how it starts? 

Hope you are all getting along ok- keep on keeping on xxx

Member

Re: September 2019 Chemo Starters

Sending you hugs, Sharon. Which bits in particular are confusing you? Is there anything we can help with?

 

With love

Mimbles

Member

Re: September 2019 Chemo Starters

Hi I am just about to have my 3rd lot of Chemo I am feeling very anxious overwhelmed and confessed by it all there is so much to take in 

Member

Re: September 2019 Chemo Starters

Hi all,

 

Just adding myself to this thread. I started the EC chemo last wednesday.

 

Still feeling pretty rubbish and today not managing to get out of bed much.

 

I'm sending you all love, and hope this time passes as quickly as possible for us all. 

 

Mimbles xx

Member

Re: September 2019 Chemo Starters

Hi

Naomi, tingly scalp is something I have been having too. I was warned about peripheral neuropathy (some loss of sensation in your fingers and extremities). Might be worth tomorrow giving your named chemo nurse a quick call to talk about your symptoms  just for reassurance.

 

Sam, so glad to see your post, I was starting to feel a bit worried!  The tablet sorted my herpes (thrush) too! What a grim business this is! Loving the hospital  as a spa comment, you do make me smile.

 

Well adjusting to my new Sinead O'Connor look quite well. You tube has offered lots of scarf tying options. Going to become quite the scarf aficionado!