ElliesMum, did you phone the chemo line? I'm so sorry to hear the first cycle hasn't gone well for you and I hope you start to feel better soon. Make sure you tell your oncologist everything you're experiencing. It sounds to me as if, like Isa, your body doesn't like the levels of drugs. You are having a rough time, aren't you, with all of this. I wish I could give you a hug in person but here's the next best thing 🤗
Try to drink plenty of fluids but most importantly phone your chemo helpline, they know better than anybody what to do.
Have you got any sea sickness bands? I'm going to be using them, and I know someone else had said she'd used them too, and they'd helped.
Take care and sending you love and best wishes 💪💪💪
💜 Fiona xxx
Hello readers I am new to this forum. Yesterday I received my second round of FEC 32 days after my first infusion. I was anxious and apprehensive as my first round had proved so traumatic. In the last round I felt nauseous from day 1. Side effects increased and I thought that day 6 was my worst with nausea, acid reflux, lethargy, low mood, feeling tearful, negative self thought, and an imagery where I was trying to find the end of a piece of string but couldn’t. That night I kept waking in a cold sweat with the negative thought and trying, unsuccessfully, to find the end of string. Day 9 I was admitted to hospital with Sepsis and neutropenia, my neutrophils were down to 0.1. I had a barrage of tests, daily bloods, drips etc. I lost my voice, struggled with breathing, and developed a rash. On day 18 I was discharged only to be readmitted on day 21 until day 25.
Day 30 I say my oncology consultant who reduced the Epirubicin and Cyclophosphamide by 30% and the Fluorouracil by 40% as she felt this was responsible for the skin rash. My oncologist has also added extra meds to deal with other side effects.
My nurse yesterday was very thorough. She took a long history and made some sound recommendations. I had nausea yesterday which seems to have settled. The one new side effect seems to be rather embarrassing as I have a vaginal itch, I’ll have to try yoghurt!
I want to echo my fellow Junebug @Kip on using the chemo hotline. Our lovely community champion Shi, from the October 2017 chemo starters, said early and often that we should call our chemo hotline whenever we had concerns -- and it was invaluable advice. I called for serious stuff (spiking a fever, swelling and pain in my arm, severe diarrhea) and confusing stuff (can I take an antihistamine for hayfever? should I be worried about unusual-for-me acid reflux?), and the nurses on the other end have always been terrific -- supportive, helpful, informative, reassuring when that made sense; concerned and sending me to the A&E when that was called for. Do not hesitate to lean on them.
[That one of the nurses recognizes my voice is only *mildly* alarming, as I've got a very obvious American accent. ]
Hello October ladies,
I'm from the June Chemo thread and have just finished my 3 x Fec and 3 x T chemo sessions so can fully relate to all your worries. I have to say the thought of chemo was definately a lot worse than the actual chemo itself, although of course I didn't escape side effect free. I found the FEC affects usually begain about day 4-5 and felt a bit like morning sickness when pregnant, I even got strange cravings... beetroot and salt n vinegar crisps! Take the anti-sickness tablets you are given, even if you don't feel sick, after a cycle you will find that you know when and how often you require them. I used the travel bands too for FEC, almost got too scared to take them off as wasn't sure if they were working or not. After about day 7 I found I felt a lot better and pretty much normal for the next 2 weeks so make the most of the good days, plan nice things to do. I did, however, lose my hair by day 12 of first FEC, I braved the shave on day 15 and although that was distressting at the time, once it had gone you quickly adapt and its quite liberating. There are lots of cheap scarves and hats on line, and remember to get your prescription for help with a wig if you want one, my hospital gave me one and I had to pay £70 for my wig, its very nice and nobody can tell, but its not for everyone and I must confess I like to be wig free a lot of the time. Also by 2nd T my hair had started to grow back and now I have a full covering, albeit fluffy and white and very very short but it is definately coming back! The T part of the chemo was different set of side effects, more mouth issues and the tiredness does build up so rest when you can and don't be afraid to just go to bed if you need to!
I found keeping a chemo diary helped, I wrote in when I took my medication as you can end up with quite a few to take, and also you get to recognise a pattern in th cycles and can plan for it.
Please don't be afraid to call the chemo hotline if you have any questions, or your nurses, thats what they are there for, the hotline is great for offering advise and they want to keep you safe.
Be strong, you will do it and keep on talking on here, it really does help.
I'm glad to hear that you're feeling okay - tired I can cope with too! There's nothing better than being snuggled up on the sofa in the front of the fire with a good book or a good film!
I don't start until 26th - it feels ages away yet. I've just booked my MRI scan for next Sunday 21st, blood test on Monday (does anyone else feel like a pin cushion?). Life has become a series of hospital or Dr's surgery appointments.
Take care, keep warm (it's raining here in Derbyshire) and keep napping
Evening Sarah, I'm so pleased to hear you're ok. That's one down, well done 💪
No, I'm not really taking time off before treatment but I'm in a bit of a privileged position. I work for my husband in his business and I'm part time anyway, I just float in about 9.30 most days, do anywhere between 2 and 7 hours, for 4 days a week 😜 Once a month, I do a Friday morning too. And I should be able to work from home on those days I can't be bothered to go in, or if I'm not up to driving.
Hope you have a good rest tonight.
💜 Fiona xx
I'm so glad to hear that you're feeling reasonably well, fingers crossed I react in a similar way when the time comes.
Take care, have a good day. (I've not long come out of a 3 hour finance meeting, followed by typing up the minutes , work as normal for me for a couple more weeks.)
Hello Fiona, I'm from the Oct '17 chemo thread. Just wanted to say that I used the sea sickness bands during chemo and they worked for me as I wasn't sick once, (just felt a bit queasy a couple of times, but fine once I'd had a ginger biscuit and taken the sea sickness pills I was given in my goody bag from hospital) so hoping they'll help you too. I put them on before I had the chemo drugs and then kept them on for a few days afterwards. (I was a bit apprehensive to take them off, so probably kept them on longer than I needed to!)
Hope everything goes well for you and the other ladies on here as you start your chemo xx
Lou, have you got the sea sickness bands? I've heard that these help so I've got them ready in my "chemo" bag. Anything's worth a try!
i think I prefer the name Humphrey as opposed to cancer. It makes it more acceptable to me. I don't have a problem telling people I have BC but I struggle to say the word cancer itself or tumour or growth. Weird, isn't it?
Good night, and hope you have a good night's sleep.
Take care too 💜 Fiona xxx
I'm pleased to hear you're progressing and I'd love to hear how you get on, as I'm on the same as you, FEC-T. I'm getting a bit jealous that I'm going to be 2 weeks behind you all 😜
Ive been spending loads on headwear too, although I've only done it online so far. I did get a nice combo cap scarf from Cancer Research online though. I always used to get a scarf for Christmas pretty much every year and I always put them out for charity but I wish I'd kept some now 😉 At least there'll be a saving on electricity with no hairdryer or straighteners every day 😀
Good luck with braving the shave! I'm not looking forward to that, but maybe it's a chance for my husband to get even with me. I shave his hair each month and the first time I did it, I kept laughing so much the neckline wasn't very straight, to say the least. He might just return the favour 😕
Take care of yourself and good luck for the rest of the week.
💜 Fiona xx
Hi Lou, how are you? How was your first session and what are you on? I just want to get started on chemo so that I can get back to normal, even though I know it will be a different normal. This waiting is so painful. But Humphrey is now tagged and the nurse let me see it on the mammogram picture, the clip is so small compared to Humphrey. My stepmum joked that I could now be tracked!
Take care of yourself Lou, be 💪💪
💜 Fiona xx
I'm off to have my clip fitted to Humphrey this morning, and I've just received a letter from the hospital wanting me to book in for an MRI when I get my period, which should be today! Does anyone else dread getting their post now?
Love to you all and have a good day 💜 Xxx
That's what I thought about the wig too, so we'll see if the next one is suitable!
I'm on TCH -which is Docetaxel, Carboplatin and Trastuzumab along with Pertuzumab -if I've read the info correctly!
I was in a bit of a tiz on Friday but it's perfectly understandable... We've no idea what to expect have we!
Thankyou Fiona... I hope all goes well for you too x 💗
Yes, I've got a voucher too from the oncologist, I'm just having trouble getting hold of the wig lady, but as my treatment doesn't start until the end of the month I'm not too concerned at the moment. I just feel I ought to have some sort of wig for those occasions I don't want to frighten anyone 😜
What treatment are you on, Aneeebel? I'll be on FEC-T. I'm "interested" to hear how we're all going to get on, bizarre as that sounds. I'm pleased to hear you don't feel too bad after your first cycle, that gives me a little bit of encouragement. It's the fear of the unknown, isn't it, that's the worst thing about our situation.
Good luck to you, Aneeebel, and I hope each cycle goes well. 💪 and keep us updated.
💜 Fiona xx