I just wanted to put something more positive on here as I have been so bloody moany so far and full of woe!
I am day 7 after first EC cycle and am for the first time feeling like myself. I literally feel as if I have come back into my body. I hadn’t realised how badly my brain was also fogged on top of all the nasty physical stuff! I haven’t even had the psychological energy to watch tv! But today I feel, dare I say it, almost normal. I ate breakfast for the first time without fear of the consequences and just feel way way more ‘in the room’.
I hope this gives hope to anyone out there really suffering in the throws of that first week!! I have no idea if I was unlucky or if everything I experienced is normal, or if I am particularly wimpy, but it was grim.
Hopefully a few days of normal now before starting again next Monday!
Is anyone else feeling anxious to go out in busy environments for fear of catching anything?
I’m so sorry. The cramps are awful. Mine felt like early labour pains! I’m not on pacitaxel yet, but assume same pain! I think mine was result of constipation. I rang the hotline in the end and they told me to get a different laxative (Laxido) to take in combination with the Senna and I could get over counter. The easing of that has been huge!
I’m a bit ahead of you, I had my first EC on the 7th Nov!! I’ve had some little side effects but nothing major, no nausea at all……… I’ve felt 99% fine these past few days and then il have my next one on Friday!!
I was a bit apprehensive about going out but because I felt fine, I have gone out a little some days…… but not far. I’ve been on the bus twice but with a mask on and again it wasn’t busy and not far away just to the shops. I haven’t been anywhere that’s super busy…… I’ve been on a few park walks and to a few shops but because I don’t drive I’ve had to catch bus. Going for my routine blood test before chemo tomorrow and then going to my sisters for a bit for a change of scenery!!
I’ve had visitors at home but no hugs or kisses and kept my distance……
It’s been nice to have a little normality some days as I’m starting to get really really fed up and bored!! ;-( saw my teen niece yesterday and we went to the park and for a walk which was so nice and well needed!!
@stevie86 it’s evil isn’t it ! Honestly my insides just feel like they are being carved up coupled with me blasting the covers off the bed with nuclear farts ! Husband said he had a nightmare last night he was caught in an earthquake ! (It was just my chemo bowels going haywire )
I can’t take over the counter antacids as they react with my blood thinners but I can take omeprazole and I’ll ask for that if it gets really bad …
@rfg oh my god … honestly last night I thought I was going to give birth … to what I’ve no idea . Probably a huge toxic gas ball ! I’m not constipated as laxido addressed that … probably a bit too violently which didn’t help … but the trapped wind as well is awful … I remember the awful irregular contractions and dragging pains of my induced labours and it felt like that …
Temp fine this morning … rash still there but it seems it’s common with taxels and as long as not itchy is t a problem … My ankles … knees in fact all my joints really hurt but the suns out so I’m masking up and going for a gentle walk x
@flojo I’m doomed as have a 14 year old Petri dish who brings everything home … I’m going out for a walk and will pop a mask on …
It’s worth pointing out that whilst our white cells will drop … we still have our T cells and b cells … these are the memory cells that help us fight off things that we’ve had before … so whilst we are vulnerable to infections …it’s quite complex … it’s actually our own naturally occurring gut, nose and mouth bacteria etc that can pose more of a risk hence having dental work done before hand … and being fastidious about hygeine … and trying to look after ourselves as well as we can .
I think it’s wise to avoid crowds … especially during the nadir phase … and certainly if you work public facing … to be signed off work … but we do still need to have things to look forward to and enjoy otherwise life will be very dull on chemo .
My mum was a bit of a hermit but we visited while she had chemo … always covid testing first etc and I couldn’t hug her or anything but considering she’s still on rituximub which affects her memory cells to immunity … she never gets ill ! She’s been abroad several times while on this treatment and remains well … and she’s 75 ! Oh and she never even got a temperature while on chemo and she was on a strong concoction
Hi xx new here xx I’m about a week post first ec !! First 5 days was pretty grim really struggling with the smell and taste change think this is what’s causing the sick feeling xx thankfully yesterday felt pretty normal but i have a really sore tongue and inside cheeks any advice would be greatly appreciated don’t necessarily want medication for everything xxx
Hi @kd48 welcome to the November group x
I’m four days past my first nab paclitaxel fusion and starting to get a sore mouth too , I’ve noticed my favourite things just taste of nothing , which is disappointing!
I called the triage line today about my chemo rash which they aren’t concerned about but they did ask about mouth soreness etc , I was advised that if it’s easier than getting a prescription from the hospital to try an over the counter NON ALCOHOL based mouth wash x
Thanks for the reply xx yeh most things I enjoy eating I’m not now xx haribos have become my best friend to take away that horrible taste on the plus side I’m craving lots of fruit
Yeh I have been using a non alcohol mouthwash but it’s getting worse by the day still manageable though xxx
Hope your rash clears up soon xx[
@kd48 don’t hesitate to ring the triage line if you need to , they don’t want you suffering in silence x
I’ve been chomping my way through mini twister ice creams … absolute bliss !!
@flower5 I hadn’t but have just ordered some suzzipad ones as I have the faint strains of neuropathy starting
@naughty_boob my mouth is ok at the moment … it’s the hideous abdo cramps I need rid of
My rash is spreading everywhere … rang the triage line and she said get some piriton and try that first because if they bring me in that’s all they’ll do
For abdominal cramps on Paclitaxel I had Buscopan. It really helped. After 2 cycles I stopped having cramps.
I hope your rash isn’t anything contagious just a reaction to the medication. Fingers crossed Piriton will work. I was given piriton before each infusion but if I remember rightly you weren’t given any. I was also given ceterizine to take at home before and after the infusion.
@naughty_boob I’ve currently got a heat pack on my back and a hot water bottle on my stomach … it’s literally like Labour pains !!
No I didn’t have pre meds as they said they aren’t required for nab paclitaxel , I did have to have treatment though when I reacted to the herceptin. They didn’t send me home with any anti histamines.
I hope it isn’t something contagious ! Although tbh … I’ve been no where and I’ve had all the usual child hood rash inducing illnesses
I’m going to argue for pre meds before the next infusion, I will be reacting to it … I react to so much these days . I recently developed an allergy to doxycycline after taking it for thirty years , woke up one morning looking like I’d rolled in stinging nettles !
I’ve swallowed some piriton so fingers crossed !
4 weeks in now, and it’s starting to kick in. Have on friday and by sunday i feel shocking in a way i cannot really describe other than the worst hangover you could have, plus some more . Had Constipation all way through and i get rib ache quite a lot . Still managing to work monday to Thursday but have more aches than usual. Noticed yesterday… my birthday that im starting to loose some hair. Not chunks but strands falling out. My ponytail feels thinner and a little scalp soreness. Sleeping after treatment is a joke. Ive had my steroids reduced to half but made no difference. Having a can of trip drink on a night to try help relax . Have you begun yet ? X
Hi, I had my first EC on Friday. I’ve been feeling pretty yuck. I’ve had nausea since then but I called helpline to ask for extra anti sickness medication. I’m feeling fed up as I am worried about going too many places or round too many people. Feeling crap too and not up to shops etc so it feels a bit lonely I guess and this is only the start
xx
I’m going out for a walk and will pop a mask on …
x