I found that I was getting hot and cold all over and I had really restless legs. Not sure if that was from the FEC though, as it was listed as a potential side effect on one of the anti sickness drugs I had.
I had FEC the first time around, and ever since, I’ve had to put clothes on as quickly as possible after a bath/shower otherwise my legs itch a lot (I moisturise a lot too). And I have ti wear pyjamas in bed otherwise I itch then too. Definitely get hot in bed now, but I think it is the onset of menopause caused by the whole shebang (I was 36 when I had the chemo first time, I’m 45 now).
My 2nd dose of chemo was aborted today as I had an allergic reaction to it. Herceptin plus 30 min wait delivered OK, TICK! But when the line switched from saline to docetaxel, as soon as it worked its 30 mls down the line, I had a reaction. Hot, dizzy, short of breath, tummy ache, weird feeling all over. Luckily the nurse was right next to me administering to someone else, so I just sat up, threw my headphones off (along with a clump of hair! lol) and said “I feel weird!!” and she was straight on it to take the line out, and the other two nurses straight over to administer piriton and hydrocortisone steroids. You could see they knew the signs and knew exactly what to do. I was then under observation for another hour, but the chemo was aborted.
Back next Wednesday to talk to the oncologist, but the nurses indicated i’d probably be back next Friday to try again, but this time they’ll pre-pump me with more steroids and antihistamines.
I’m OK now. The steroids are fighting to keep me awake against the drowsiness caused by the piriton!
Celebrated still being alive by going to a lovely cafe in Abergavenny and having cheese and potato pie with bacon and beans. And a big slice of coconut and cream sponge. Talk about comfort food!
Oh crikey Flora I’m glad you’re ok - bit of an eventful day ! Fingers crossed for next week x
So I had 2nd cycle EC yesterday. All went fine except for the 4+ hrs wait ! They were one nurse down and issues with pharmacy plus 56 pts to get through compared to the usual 40ish - they were constantly apologising but still smiling. So a very long day - got there at midday and home at 7…ravenous ! Good sleep and just the usual bit of nausea and headache this morning - pills popped and hope for a lazy day with a gentle walk thrown in for good measure.
Have a good weekend ladies x
Hi all.
Flora, hope your OK and are recovering from your ordeal. I had FEC-T last time and definately found the T worse than the Fec but not sure if that was beacuse I had already had 3 sessions of chemo and my body was tired.
Have had a bad couple of days, after feeling fine, just tired and going to work on Tuesday and Wednesday (after the chemo on Monday), I started with severe stomach pains due to consitpation, took 48 hours to ‘move’ never felt so ill in my life, then stupidly had chilli con carne for me tea yesterday which my body obviously didnt like and ended up with sickness and diarhoea all night, not good, luckily feeling better today and have even managed a little walk with the dog |(and hubby) so things are looking up.
I agree about food, eat what and when you need, I have been nibbling since Monday, as I have felt queasy everyday but it has helped. Trying to ween myself of the anti sickness drugs today and seem to be doing ok, although not eating much as dont want to start my stomach off again, sticking with toast and plain food
I started on the Clarityn/Piriton today after a bad couple of days, seem to be helping with the aches and pains. Fingers crossed. Dont know if anyone esle is trying them but I was told last time to take them all the time, not just during the first week or so when the symptoms are worse, if you keep taking them it stays in your systems and it definately helped last time so gonna keep taking them this time.
Hope everyone is having a weekend, we can beat this crappy disease, keep strong everyone.
Julie x
Wow that sounds scary Flora - glad you are OK. Hope they manage to sort out next week.
That comfort food really does sound good ??
Day 3 of round 2 FEC for me - feel much better today - woke up after a good sleep and felt great - thought I’d make the most of the sunny day before this predicted cold snap arrives and pop to the local market - but by the time Id showered and breakfasted I felt the need to lie down agai- so another day on sofa for me. Ice pop to suck on for horrible mouth taste .
sadly have started to lose hair even though using cold cap - hoping it won’t be too much ?
Have a good weekend everyone.
Ice pops for mouth taste. Good idea, Bibi.
And thanks for the tip on taking the piriton all the time, Julie. I’ll definitely keep it up until I see the oncologist on Wednesday and see what she says. But I have a 40 mile each way work commute, so will have to see about having it all the time, as I’m too tired on it to drive.
Sorry you haven’t been so well. Keeping gut health seems to be the hardest thing to balance. Even without the chemo, I’m getting indigestion from the steroids.
Oh Jude, what a bummer of a wait. Let’s hope it’s better next time.
Shaving my hair off tomorrow. Tons of it has come out today. The wig will keep me warm for this cold snap!!
Hello everyone
sorry I haven’t posted but I have been reading your posts.
ladies on cycle 2 I wish you well . I too have had terrible heart burn and indigestion since 1st chemo on 12th feb. I contacted my gp who prescribed Lansoprazole 30mg this has helped and obviously avoiding spicy, citrus foods.
Have found frozen mango nice for my sore mouth any other ideas for sore mouth.
My 2nd cycle starts on 5th March so I’ll be joining you soon x hugs to you all x
Hi everyone,
Flora what a nightmare, I hope it all goes well next time. Sounds like the nurses were really on the ball, thank goodness. I have no idea how you manage to do a 40 mile each way commute while going through treatment. You must be made of steel! I did a commute like that for 18 months when I was completely healthy and was like a zombie most of the time!
Jujubee when I was getting constipated I ate as much fruit as I could manage and dried apricots but the thing that seemed to get me moving in the end was a bowl of sultana bran.
After nearly a week of sound sleeping at night I have now been awake since 04.30 and can’t get back to sleep. I have a dry throat and tickly cough so decided to get up and have a hot drink. Now sitting wrapped up cosy on the couch with the dog snoring by my side. At least he’s quieter than Mr Wee Burd whose snoring was a real barrier to me managing to nod off again!
I have started to get mouth ulcers, fortunately not painful but the inside of my mouth is definitely more sensitive and my extra soft toothbrush is now too harsh and I have had to get a softer toddler toothbrush. It’s a lovely pink one with a rubber sucker on the end so that I can stand it on the edge of the sink! Silver linings and all that!
Well my tea is finished so I will head back to bed and hope to drop off this time. Have a good Sunday everyone and good luck for the ones starting round 2 next week. I just have to keep well for another week before I jump on the merry go round again.
Hi all
Well I was hoping to go back to work tomorrow, had my Docetaxel last Monday and have been taking my Capecitabine daily since then, but I have been persuaded not to.
I still keep getting the dizzy spaced out episodes and and don’t even feel safe to drive. I try and go out for fresh air but need someone with me and afterwards I can sleep for England. Last time I had chemo, albeit 15 years ago, I was very sick but don’t remember feeling so out of sorts and so fatigued.
Don’t mind admitting I am feeling a little sorry for myself at only 1 week in and shouldn’t be as lots of you seem be to having a harder time of it.
Sending hugs to you all ?
T
X
Don’t beat yourself up Miss Green. Everyone is different. Don’t forget you are ingesting deadly poison and asking your body to absorb it and then recover from it so it’s no wonder that you feel wiped out. Getting better has got to be your priority so you need to give yourself a chance to do that. Work will go on whatever happens - you need your resources for yourself. Hugs to you brave lady x
Hi Everyone
New to the forum and had my 1st FEC on 15 Feb.
Good to read about all your experiences and side effects. I used the cold cap. I was spacey, agitated and anxious all over the weekend, couldn’t sleep. But no sickness mouth sores or constipation which was good. Just as i was feeling normal on Tuesday I picked up an infection and was taken into hospital on Wednesday with neutropenic sepsis and temp of 39.1!!
Am still in now and after 19 iv antibiotics my temp is finally “normal” and am hoping to go home tomorrow. Not sure yet if it will delay my 2nd cycle on 8 March.
In hindsight I should have gone in earlier as temp was low 37’s all Tuesday but thought I’d be ok. So please keep and eye on your temp as it really is life threatening and dont hesitate to get it checked out. Xxx
Hi all - Day 5 of round 2 FEC and still feeling a bit rubbish - nauseous and dizzy- felt better first round at this stage but hoping it will improve tomorrow. Keep trying to do little bits around house but don’t last long so have given in and am on sofa again .
I was given Emend for 3 days , Ondasetron and Dexamethasone for days 2-4, and Domperidone to take as needed for antisickness.
Welcome Miss H - sounds like you have been through the mill it’s the temp thing and being in hospital- hope you are recovering well.
Take care everyone and look after yourselves- I have generally been keeping very positive but did have a wobble last night when I was feeling rubbish and realised I’ve got to do it another 4 times yet. Sure I’ll be fine once I shake this nausea off.
Hi All
Gosh, Lady H, I thought my allergic reaction was scary, but sepsis is even more so. Glad you’re through it now, but do take care xxx
I have Metoclopramide antisickness to take home, plus another one they give me just before the chemo itself, plus the dexamethasone steroids. Haven’t had any nausea. Indigestion isn’t too bad, and seems to be caused by the steroids, sorted with occasional Gaviscon. Not having had the chemo this last time, but still have the steroids, I can tell that the steroids cause a bit of indigestion, and bloating/constipation. The piriton is making my head fuzzy and slow, and I’m not sleeping well.
I think we’re all allowed to feel a bit sorry for ourselves right now. I am getting my head around not being able to function very well, as I had been so confident I would sail through. Harrumph. I am lucky, as I only have 4 treatments (and a year of herceptin) to get through, so I am focusing on that. Should all be done by just after Easter, if we can get this 2nd round sorted this week!
Hugs to everyone. I had 8 treatments last time, and I got through it. We can do this! One day at a time xxx
PS. chopped my hair off yesterday:
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Hi All
Back at work today, I cant believe how well I feel, after 2 bad days on Thursday and Friday my energy levels have improved over the weekend and even managed a couple of short walks. I am still taking each day as it comes as I know from last time that how you feel can change in a few hours. I have a 50 mile round trip for work but luckily have a friend who meets me half way and we car share from there, normally take turns but she is driving the 2nd part for now so I dont have to drive all the way.
Bibi - I found it got harder the more sessions I had, just listen to your body. it will tell you want you can and cant do, I am on Ondansatron for 3 days and them metoclopramide for the sickness, had the same last time but it definately isnt working as well this time. I always feel queasy and am eating little and often to help.
Wee Burd, im on slimming world so eat loads of fruit and veg but unfortunatley it didnt help with the constipation, I see the nurse on Friday so am going to ask her for something for next time. not going through that again. (and when I say im on slimming world, I mean is loosely now, I was being good until I started this journey but am just going now so I dont fall off the wagon to badly, dont want to undo all the work I have done so far)
Lady H, you have been throught it. Hope you get sorted soon, I keep forgetting to take my temperature, will try and remember, last time I had chemo I had the injections for 7 days to help boost the immune system but havent been given them this time and definatley feel more vulnerable, im not isolating myself as such but take note of people around me and if anyone so much as looks like they are going to sneeze I run (well walk quickly) in the opposite direction.
Keep well everyone
Julie xx
Hi jude51
Hello to everyone keep strong.
You asked about medication on my 1st cycle I had emend 1 hr before chem then sure they gave cyclizine IV and dexametasone before chemo . I went home with reduced dose emend for 2 days dexamethazone 3 days and domperidone 3 times a day as required . Sickness and nausea lasted 4 days followed by indigestion on and off for days until I started lansoperazole. Lethargy lasted nearly 2 weeks . Week 3 I feel human again just sore mouthback ache and less tired.
Hugs to everyone x
Wrote a post and lost it. I’m on dexamethasone (steroids) and metclopramide for antisickness. They give me another one in clinic pre-chemo too.
Indigestion not too bad now, Gaviscon sorts it out. As I didn’t have my chemo, it appears that the steroids cause the indigestion, plus bloating and constipation. I’m taking Senokot for that. The piriton is making my head fuzzy and I’m moving about slowly, but managed a couple of miles with the dog this morning.
Shaved my head yesterday as the hair was getting painful. The last bit left will rub itself out. I’m in living room with a woolly hat on!!
Looking good Flora!
I think going out with a woolly hat would really suit you xx
Thanks ladies for your positive words earlier. These forums are so useful. I find more on here about the real side effects of chemo. It’s so reassuring to know you’re not alone with the weird and wonderful side effects that chemo throws at you.
Today I had a headache from hell and it made me so nauseous I couldn’t take my Capecitibane tablets. GP has also confirmed Oral Thrush on top of it all. The chemo unit has told me to not take it for a few days.
On the plus side the dizziness/disoriented feelings haven’t been as bad ?
Love , hugs n positve thoughts to you all
T
Xx
Thanks everyone, pleased to say my temp stayed down and I’ve been let home. Such a relief after 6 days in hospital. So good to hear everyone’s different journeys as they are so different. Wish I’d joined the group from the start but glad I have now.
Macneech and weeburd, sounds like were on the same track as my 2nd FEC is 8 March. Won’t know until bloods on the 5th if it will be delayed. My 4-6 cycles are T, herceptin and pertuzamab. I then need lumpectomy and lymphnode removal followed by radiotherapy. Are your latter cycles the same?
Flora - you’re looking good ? I used the cold cap but won’t be 2nd time as I’m not sure if that made my spacey head feeling worse. Was it you that lived in abergavenny? I’m going to Usk to sort my wig and wonder if you went there?
Well done to those of you going back to work. Don’t think I could contemplate that. But I do hope no one overdoes it, listen to your body.
Take care everyone xx