January chemo starters ?

[Crazytimes2017]

Day 5. (TCH)... sore mouth starting. Got cordosyl from hospital as well as something called benzydamine. mainly seems to be effecting my tounge at the mo.. everything tastes ick and it's gone a funny colour..nice. Any of you lovely lot been through this bit yet? Any advice?

[Aliand]

Hey girls,

sounds like you are all turning the corner and heading towards better days. It does happen I promise, I cant beleieve that week of fog now and its weird to think that in 5 more days I'll have dose 2 and be back in it. Have more of an idea what to expect now though so am prepared. I'll let you know how my new antisikness meds go this time, got the prune juice in hoping it helps too (never drunk it hope it doesnt make me wretch) 

I'm going out tonight, its dd 16th birthday so I've book a personal shopping slot in Top Shop, figured it limits the amount of people that I have to meet, will be going in with scarf up and gloves on - thankfully that wont look strange as its flippin freezing ! DH is so worried that I'll catchg flu as even though I'm vaccuinated it turns out the vaccine doesnt cover us for flu B which is rampant so be careful out there everyone.

I'm day 16 and still got hair, really suprised its not fallen out, bits are if I tug it I'll get some out but not big clumps as yet. Its sore particularly in one part of my head so I'm expecting the fall to just suddenly happen but for now it's there. Good job really as theyve messed up the ordering of my wig. Imight cancel and go elsewhere other people had suggested I ask for a voucher and do that but I wasnt offered one and didnt know about it until I had ordered one.

Tracey good luck with avoiding germs in your house !

Rosie I'd have probably done the same, in fact I offered someone a lift the other day and asked if they were free of coughs and colds before they got in the car - I think they thought I was mad as they didnt know I was having chemo until I told them.

Shocked, PICC lines not for everyone, it's bespoke treatment I keep being told and I got that feeling at scan too, followed by urticaria as It turns out I'm allergic to the dye - oh great.

Jamesy photos is on the little picture icon where we type a reply in the box and if the photo is downloaded onto your computer its easy to load it up. Dont know if it works the same by phone as I tend to access this forum on my computer - my eyes just cant read itoff my phone - I'm in denial that Im at that age  !

Keep going girls, yopu are all doing great, next week when I'm feeling crap you will all be great - or much better at least xxx

[Shocked]

Dealdoh - thanks for the reply will have to watch out for feeling like I'd wet myself then - the joys of cancer hey 😄

The one thing I got completely freaked out by was the PICC line (I know it should make things easier its just a stupid phobia I don't like the cannula but at least that will be taken out before I come home) so the doctor has checked my veins and he thinks I should be OK without the line and the nurse has said she has made a note of my concerns (she must have thought I was mad).

Rosie - don't blame you for asking the chemist, I'm sure he'll understand - I think I may hibernate until summer to avoid germs (except I'd go crazy plus we are renovating a house so I can't)

Tracey - its so hard to avoid germs if your little one is ill (he will want mum as well) I hope your little one recovers quickly, its just typical that your husband has caught something (I always end up with a cold when I fly - for some reason I seem to always be put next to someone who spend the flight coughing and spluttering)

[RosieH]

So embarrassed..I went to the Chemist to get some supplies and the lad behind the counter spoke with this crazy husky flu like voice, yours truly jumped back like a freak saying oh no have you got a cold. Oh no he said I have a damaged windpipe this is how I speak!!!

At which point a played the Cancer chemo card saying that I wouldnt normally ask a complete stranger blah blah blah!!

Fec..there is an old forum with pages of advice on T which suggests that its a bit different in the fact the 2nd and 3rd arent as bad as the first. That could however be a bit of a mindset thing and also when you get to the 2nd you are able to manage things as they come a bit better.

Tracey Im trying to think of a solution for poorly babies and low imunity Mums...i suggest maybe for them, gloves gowns and facemasks!!!!

[Tracy12059]

Hi RosieH
I’m exactly the same as you and the same combination of drugs too! Today is day 7 and I’ve woken up feeling great! I’ve had very similar side effects although I haven’t had diarrhoea I’ve been rather loose and need to go at some unearthly hour of the morning!!! My biggest concern now is that when i went to collect my little boy from school this afternoon he came out full of the cold 😡! It’s sods law isn’t it! The day our white blood cells drop is the day he gets a cold!!! My husband has also just arrived back from Hong Kong where he works and he’s got a sore throat 😳! I’m thinking of locking them both in a different room!
FEC in hell - I’m so sorry you are still suffering - I really hope they can get you sorted before round 1 😢.

[Jamesy46]

Ladies I think your superstars ! All of you xx
I fetched my wigs today , I ended up having my free one and I bought another one too , I don’t know how to put photos on here else I would x
I thought I was going to get upset but I didn’t I was quite surprised , line flush tomorrow and hopefully stitches out of my neck x
Got my difflam on prescription today , I’m ready now and getting impatient to start , soonest started soonest ended xx
You fabulous lot x

[Starfire9]

Hi RosieH, Day 9;

I made it downstairs for the afternoon but am now back in bed. Still feeling sick but nothing like as bad as previously so started to turn it around Yayyyy! Things have got to be done differently before cycle 2 as I can’t have that happen again. I cannot believe you are working again...I can’t hold a decent conversation yet and would be useless! Well Done for you x I haven’t checked out the T forum... is it on here? I’ve always been told that chemo is accumalative. I also had Carboplatin straight after the T so maybe that had something to do with it?

[RosieH]

Hi all I’m Day 7 of T (having the T first) side effects bone pain, tummy pain++ constipation then diarrhoea like I couldn’t believe, mouth like I’d been drinking acid and general blah...but that didnt start till day 3 and today I went back to work!! It was bloody fantastic. 

So T is tough ladies but the worst was really 2 days, the T forum says that the first dose is the worst. You absolutely need pain killers for it, I stupidly tried to manage just because of the shear amount of pills we are taking but next cycle will be taking them straight away.

Fec I really hope you get a break soon...

Shocked...at last you know what’s happening 

About to try a cheeky little workout...should be interesting xx

[Dealdoh]

Doh my memory is rubbish (and you will know there is a lot of needle sticking) but I am pretty sure it was into a vein in the arm.  It really wasn’t a problem at all.  If I am getting my scans correct, this is the one that the scan technician said that I would feel that I had wet myself but she could categorically state that I wouldn’t have.  She was right but goodness it was the strangest sensation and I wasn’t convinced until I had checked my knickers!! (Is that too much information?). It was really nothing to worry about. 

[Shocked]

Thanks Dealdoh = I phoned the unit and they have asked that I try to keep the appointment and have a chat on Tueasday about it - the hospital has signs up all over the place saying there is a flu outbreak in the hospital so if I can avoid hanging around I will. Stupid question if yo udon't mind but where did the put the dye in? 

[Dealdoh]

Hi Shocked,  I don’t think you need to worry yourself about the staff getting fed up with you; they will appreciate the amount of information which will have been thrown at you and will quite understand that some of it just won’t stick.  I had a bone scan prior to my surgery and chemo and, while I know your situation is slightly different, once I was given the dye, I was allowed to go home for a couple of hours, so didn’t need to hang round the hospital unduly.  It’s always worth a call, I am absolutely sure they won’t mind.  Good luck x

[Shocked]

Thanks Crazytimes will take a look - iI just want to be prepared - not sure if a wig will drive me nuts amd it looks like a cold cap isn't available although I have to admit I never asked seemed to have so much information coming at me yesterday and forgotten most of it already - have already rung the unit twice with stupid questions I forgot to ask (like can I drive afterwards) they will be getting fed up with me.

[Crazytimes2017]

Hi Shocked,
I bought a couple of pre-tied scarves that are attached to a nice head band from bohemia, and a chemo hat with a flower on it from Anna Bandanna when I might just need to bung something on quick! Happy with quality of both. Hoping I won't need them but always best to be prepped I think x

[Shocked]

Hello Ladies,

So after a short delay I will be joining you lovely ladies - my Oncotype result came back high at 35 so I am starting FEC-T on Tuesday and it looks like I need Radiotherapy afterwards now as well on my lymph node area - well at least I know 100% i need the chemo.

Just a quick question I am having FEC Tuesday and the hospital have just rand to say I need a bone scan done which will be done on the Wednesday which will involve sitting around the hospital for 4 hours - for thse ladies who have just started FEC do you think you would be up to the bone scan the following day - just wondering if I should try and delay the scan slightly as they cannot fit me in before the treatment???

Will also need to sort a wig after Tuesday, have any of you purchased and ready tied scarves - I am so bad at tieing the scarves 

Sooo nervous now its weird like I've just realised I have cancer

[Dealdoh]

Hi All.  Day 7 here following first FEC.  I have to say that it really hasn’t been anywhere near as bad as expected.  I suffered very mild nausea and headache for the first couple of days and was tired but other than that nothing and even managed to go out furniture shopping.  I started the GCSF injections on day 5 and I have to say I felt wiped out the morning of day 6 but found if I rest when I get tired, it sorts itself out.  Constipation has hit but using good old senna for that.  The other thing I have noticed are spots/lumps under the skin along my jaw line that are mildly tender to touch.  They are not bothering me unduly and I was wondering whether it was because I am still using  my usual facial cleansing wipes.  My hair still seems to be intact but just looks slightly thinner and more wayward that usual. 

X

[Crazytimes2017]

Hey ladies. Day 4, not feeling too bad, other than being really Tired, plus my head is really sore when I comb my hair...using really wide tooth comb very gently - wondering this is a sign of possible hair loss starting, or some other random side effect! Taking so many meds it's hard to know what's what!!!!

[Aliand]

It's day 15 in the chemo house...

I'm feeling normal, funny how you realy appreciate feeling normal isnt it when before we just took it for granted. The hair is starting to fall out, not a lot but if I pull gently it comes away easily. Hoping enough stays there to make me look respectable on Friday as its dd 16th birthday and we are going to personal shopping in top shop and then to pizza express for dinner, not sure how I'll pull off the full Jessie J if it does fall out. No wig yet as I think man forgot to order it - very annoying as I saw him on Dec 27th. He now says the one I wanted (my 3rd choice) is no longer available !

FEC you really do sound like youve had it bad by day 8 I've written in my diary best day so far, nausea left me by day 5 though it was another day til my bowels were open and that was horrid. Sounds like you might be on the up now - heres hoping for you x

Saw my oncology nurse today and they are ading a new anti sickness this time so heres hoping it works. Difflam is a miracle if you get a sore mouth mines healed in 3 days. They've told me to use the gel sachets I've got once a day throughout treatment to protect it. Just thought I'd pass that on.

This time next week I will have had my 2nd chemo. (I'm having 😎

Sleep well everyone, tomorrow is another day closer to cure x

[marie78]

It was the day after Chemo, sick every half hour all day until I was given an anti sickness injection. The meds were just not staying down! Since that day I have regularly felt queasy but managed with tablet under the lip and regularly eating small amounts. I didn’t sleep for three nights, I assume due to the steroids but I didn’t feel too bad considering, heart burn has also been a constant nuisance so far, I just take rennie for this. Oh and a sore throat and mouth yesterday but seems better today, I have defflon (or sounds like that) for this, everyday I am expecting to feel worse/different, all very new experiences for us aren’t they? 😳 xx

[Starfire9]

Thanks Marie78. That’s really interesting and brilliant news that you feel normal on Day 7, what has been your worst symptom and day so far? x

[marie78]

Hi FEC, sorry you are still having such a rough time. Big hugs 🤗 xx

[marie78]

Hi. Today is the first day (day 7) that I feel ‘normal’, hopefully it lasts a while. No hair loss from anywhere yet but I’m guessing it’s still a bit early. Xx

[Starfire9]

Evening, Day 8;  I’m still nauseous and wretching and still stayed in bed all day. My head however is a bit clearer. Hopefully will go downstairs tomorrow? Husband taken time off work... thank the lord! Got some small blister type spots appearing on my hands??

Aliand great calendar. I have one by the bed. The last time I had one of those WISH YOUR LIFE AWAY CALENDERS was at boarding school when I used to cross off the days until the holidays. As for pubic hair loss there is nothing happening to me... typical isn’t it.... I wouldn’t mind loosing that kind of hair. My scalp is falling off as well as my hair... horrible. 

Hope everyone else is doing well?

when we post I think it would be a good idea to start with what Day we are on per cycle so we know each other’s side effects and timings and can compare? Compare the chemo.com xxxxxxxx

[Jamesy46]

Hi ladies justa quick One sorry , I got 20+ manukahoney today 500g from Holland and Barrett 48.0o but get another for 1p , bargain xx keep
Me going for a while x

[RosieH]

Nice calendar...😁

Today I’m going for diarrhoea and to just add to that my period!!! Otherwise not bad. 

I know what you mean by pubic hair was dying to ask if anyone else had the problem!! 

I think counting downs a brilliant idea xxx

[Aliand]

I've bought myself a calendar it's not really to use as a calendar of things to do, its for me to tick off the days of treatment. For me doing 8 cycles that is a total of 148 days of treatment so I've 134 days to go. Well that doesnt include delays because my bloods are out but its all about me seeing my progress. I've stickered chemo, bloods, outpatients, invasive treatment such as PICC line and most importantly treats so I can make sure I get at least 1 treat every chemo treatment. 

Hair has started falling out today, dont laugh but I noticed because when I went to the loo pubic hair came out 

So I guess I've got about 3 days left (including today) before I have to get the hairdresser round with his clippers. Annoyingly I've just rang the wig man and he hasnt got my wig in yet ! Looks like I'm going to be on you tube watching those headscarf tying tutorials and trying to get it right or rocking it like Jessie Jay with big earings, bold make up and a bald head !

Also seen oncology nurse today and she is going to add some other antisickness to my  meds it means another 45 min to an hour each chemo as I have to wait for it to work first but if it helps then I'm sure I wont mind.

How is everyone else doing today ?

[Jamesy46]

Thanks Jay , thought they had forgotten me ! One big round of appts isn’t it ,
Rosie glad your feeling better and back home , n
Going to sort Wendy wig Thursday , don’t know if I’ll wear it but going to pick a nice one xx

[Jay68]

Jamesy46 - you get an echogram heart scan before the Docetaxol/herceptin and pertuzumab treatments and then every 3/4 months until herceptin injections finish. So you won't get one for a little while!

They are painless and nothing at all to worry about - I'm going for my 3rd one at the end of this month!

[RosieH]

Fec that’s an a awesome video...

how are you doing now ?

Im feeling so much better today, slept for 12 hours which was amazing.

Working from home today and currently having a break with a cheeky pot of choc ice cream ( helps the mouth) 

Got a bouquet from Work today which was lovely...so good to have a better day, every little thing that I can do today but couldn’t yesterday feels so good...x

[Crazytimes2017]

Hey Jamesy46! I think heart scan is fairly standard with herceptin, by I might be wrong. You have been waiting a while for your chemo start Hey! At least you have chance to get used to your line before they start to fiddle with It!! I only had mine in Thursday.. chemo yesterday!! Doh ☺

[Jamesy46]

Morning ladies , Theresa I had. My Hickman fitted last Thursday , I’m just getting used to it , was very sore and weird heart palps too , feels and looks ok too . Bruising has come out now , still can only lie on my back but getting used to it now , I think all areas work different , I was diagnosed October 6 th , I’ve had my surgery but no chemo till 1 feb , seems to have taken ages to get started . Do I have a heart scan before fec-t ? I haven’t had any appts yet just my pre assessment on the 29 jan ? Wonder if it will be then x

[WhyteFawn]

Hi January ladies. Just popping over from the Oct thread keeping an eye and making sure you're all doing ok.
I can't offer advice on lines but as I don't have one it can take 4 attempts to get a cannula in sometimes. Which is a real pain. I have learnt to drink loads the day before chemo and go to app all bundled up in warm clothes and it helps veins to stick out. Last 3 have gone in without too much issue.
Tracy, you can get prescribed difflam mouth wash for sore mouth. I've had mouth issues on every cycle. I alternate difflam and corsodyl.
More of the Oct ladies are approaching their last chemo this month. So don't worry you can definately all get through this just take one step at a time. I have my last chemo on Friday. I'm very much looking forward to it.
Keep smiling xx

[Tracy12059]

Hi Theresea
I had a portacath fitted last Monday (8th January) . The first couple of days were uncomfortable but not sore. I had my first chemo on the Thursday through the port and what a dream! When they put the port in it took them five attempts to cannulate me to sedate me so imagine how over the moon I was when I realised how quick the bloods and chemo process was through the port. The whole thing took a little over 3 hours and that was my first session. I had the one neck stitch out yesterday and the other 7 are to come out at my next chemo appointment on the 1st February. Where the port is placed is very bruised looking but again it’s not painful. I’ve found getting used to seeing it under the skin and feeling the lump harder to deal with! I’m slowly becoming used to it and moving around in bed more freely.

Like you, I’m also having chemo first pre surgery. I had my first docetaxel on Thursday and I have to say it was a far better experience than I expected! Whilst I haven’t felt like partying, I certainly haven’t been floored. I’ve managed to get out each day even if it’s just to walk my little boy to school. I’ve taken all the drugs the hospital gave me and will continue to do so. I’ve got a bit of a sore mouth today so I’m going to call oncology this morning to see what they advise. All in all it’s been doable.
Good luck and hope the port settles - let us all know how you get on.
💖

[Crazytimes2017]

Hey Theresa47,
No portacath but my Hickman line was really sore for a good 3 or 4 days after insertion. Could lay down or sit up unaided and got some weird heart palps. I did paracetamol and sneaked in a tramadol once.
I found using a V shaped pillow on top of my normal pillows really helpful in bed for the first few days.
It will settle, but call in if the pain is too much. On chemo day it was so easy with my line - no faffing finding veins and no needle pains - defo benefits to standard cannulation.
Sending hugs x

[Aliand]

Hi Theresa I’m sorry about your diagnosis but welcome to the group.
Sorry I’ve not had a port cath so can’t help with that. I’m having the same chemo drugs as you. Hoping all goes well for you today. Take it easy over the next few days, drink plenty today and tomorrow to flush it all out. And take all the anti sickness meds even if you don’t feel sick. Let us know how you get on x

[Theresa47]

Hi ladies I hope you don’t mind me joining you! I was diagnosed on Dec 28th, I was originally scheduled to have a lumpectomy and axillary node clearance but more pre cancerous cell were found so they’ve opted to do EC-T before my op. My first session is tomorrow 17/01/18.

I had a port cath fitted yesterday and it’s hurting like hell. I can’t  get comfortable in bed and paracetamol hasn’t  worked. 

Has anyone else been in pain after the port cath fitting? 

Xxx

[Aliand]

I'm seriously impressed. Never done a festival, theres always an excuse/reason why not to. Maybe 2019 will be the year for me. DH is taking no 1 son to Silverstone (camping) this year - 18th birthday treat. Must make sure we get a tent big enough for all of us for the next adventure.

[Starfire9]

Love the pic Aliand. Cute. We have taken my daughter to Glasto every year since she was born. It’s a fallow year of rest this year so thank goodness we won’t miss it!

[Aliand]

wow fec did you go to Glasto !

Crazytimes, you go girl that's 1 treatment down, you will probably get some side effects, just remember dont suffer, ring your unit for advice and treat it early. Some people dont get many though and you might be one !

Fec you've got me playing now - this is me, a couple of years ago...

Mouthwash is whats getting me through today and darymile icecream.

[Starfire9]

Well Done,

[Crazytimes2017]

Hi all. So today wants loads better than I expected!! Herceptin injection was fine, cold cap was FREEZING and for the first 10 minutes I didn't know if I would bear it. But put my headphones in and set goals of getting through the next song...did the trick! Managed whole 2 hours!!! After first 15 mins it just felt numb - no pain!
T and C was fine. No reactions.
Just a bit concerned that this is the calm before the side effects storm...but gotta ride that one out I guess!!

[Starfire9]

Posted a clip on YouTube then copied the link x sneaky

[Jamesy46]

Ooh how do you do that !!!

[Starfire9]

What’s keeping you going today?

This is mine....https://youtu.be/l8ZfJN6bXaI

[Starfire9]

hello all. 

Ive been on the day ward of the oncology unit today due to feeling rubbish. My bloods were okay just low on magnesium and calcium?No temp or anything sinister. They think it may be a reaction to the injections why I am so bad. Got to go back again on Friday for a check up.

How are those of you with hair still doing? I had my hair cut short for the occasion and it’s starting falling out today! Day 6 xxx

[Jamesy46]

I’ve got an appt with doc fit sick note on Thursday I’m going in with a list of prescriptions lol , difflam is on it also movelat ( think ) ibuprofen cream , picked up such a lot on these forums lol , I want it all in the cupboard ready , bought loads loratidine ready for T as on forums it says good for aching legs

[Aliand]

Rang the unit - got to pick up a prescription for difflam spray. Ay least its a trip out dh can't tell me off for !

[RosieH]

Hi ladies

Jamesy I did feel rough with it yesterday but it was also my first no steroid day so could have been that. I’ve got till tea time and if no temp then home. Mouth has turned into shredded hell though, think they are writing me some mouthwash up to take home. 

One positive though is although it really hurts it’s great knowing that the pain in my breast is the tumours reaction. Guess it means something’s working!

Fec how are you now?  

Keep going ladies only 120 something days left 😱x

[Aliand]

Hi Jamesy,

I'm day 13 - hopefully not an unlucky for some one. Totally feeling normal, was barking orders at everyone yesterday then guess what - got my period ! I'm assuming its my bodies last attempt as its not a normal period, v light yesterday and really heavy today with big clots in, I'm usually a regular person with a regular flow so it's a bit weird. 

I've also noticed today that I've a bit crack down the centre of my tounge, becasue of my tooth issues I've been swigging corsadyl. and had to stop because my tounge was burning. I'm not sure if its the corsadyl, the chemo, an iron deficiency or thrush though I've no white patches. Not sure if I should ring the unit to ask advice. It's abit like having a paper cut. Hope it heals before next weeks chemo.

Oh RosieH, how horrid to spike a temp, mine was 37.3 yeatserday and I was panicking it would go up - thankfuly it went down quick ! I hope they sort you out soon. I'm dreading any A&E visits myself as my DH works in A&E so I'm well known. I totally get why you dont want to face them all when you are feeling vulnerable and out of control. Hope the ward sort you out asap. My boobs have not reacted as much as yours but they have been tender, if I grab a load of hard things to go upstairs its uncomfortable, a bit like those breastfeeding days !

Crazytimes, hope today went well and the cold cap was bearable (I'm not bothering you are braver than me)

FEC, any improvment today ? Hoping so you deserve a break and I think you said you were on your own today 

Keep going girls, we can do this

[Jamesy46]

Hi Rosie , hope your feeling better , did you feel ill with temp spiking ?
Marie fec and phinou hope you are all feeling better today and as each day goes onxx
What day are you now ailand ?