HI LIly thinking of you today let us all know how it goes Love Bobbiexxx
Hi Lily
Whilst I’m on a different arm of the TACT 2 trial and further ahead, we have talked on other threads. Just wanted to wish you well and hope that your first chemo has been as okay as possible for you!
Take care
Gill x
hi everyone
i think im having my chemo on similar dates to some of you. had first one of six fec on may 8th, next one on may 29th. i had similar reaction as Nicki, was sick and weak for about 5 days then i picked up and havnt looked back since. Not really looking forward to feeling like that again, but needs must.
and i have to remember each time is probably different, i am going to ask them to reveiw my anti nausea medicines. i was taking Domperidone, Ondansetron, and Dexamethasone, any one else prescribed these? How did they work for you?
I am getting about ok, now and enjoying my 10 days of freedom, before next cycle
. take care everyone.
Lily,
How did it go hun??
Hope ur ok…Feel very sick n weak but otherwise ok!!!
Sending lots of love.xx.x.
Hi everyone
and wow I am touched by so many caring comments, thank you to all of you. What a family we are together.
(Special message for Lolly, glad your first one is done and you sound like you coped mentally really well. I hope you feel brighter in a day or two.) Hooray one is done. Try ginger cake and ginger biscuits for the nausea.
I spent 6 hours in hospital today and kept the cold cap on for just over 3 hours thanks to a lovely 73 year old sitting next to me, bless you Beryl, who said well its not bad at all after the first 10 minutes and encouraged me not to give up in the first 2 minutes. She was right and it wasn’t that bad at all. They could not access the port ( I had put in especially for it) and wanted to send me home to try again another day. I felt really strongly that psychologically this would leave me in a bad place, building up stress for the next one and I had arranged family, dog, life, etc for today. So I said no I want to have it today, my research nurse fought my corner again and after all and sundry discussing it privately in the office without my input, they said no to the port but agreed to using a vein (which I had been told were unusable as cannulas too big) if I could cope with it. Nurse said theirs are smaller (what!!!) and got it in in 3 seconds with no pain at all and treatment done in a flash. All thanks to a bucket of really hot water. Then sat for 2 hours in the ice cube hat but had free reflexology during this, which was amazing. It is now 11.45 so 9 hours after treatment and no side effects at all, feel exactly the same but following their tablet regime just in case that is masking things going on. So I am feeling really fortunate after a crappy start to the day but one chemo down. I am only on one massive dose of epirubicin so I only get side effects from one drug, which probably explains the calm. Will see how I wake up tomorrow.
Thanks everyone, how was your day
Hugs
Lily x
Good for you Lily - glad you are doing okay, hope you wake up the same tomorrow and you were right to stand your ground - nothing worse I would have thought after the build up to be sent home.
Heres to not many side effects for you
Lisa
xxx
Well done Lily
As Lisa, says good for you to have insisted they went ahead, at least you’re one down now. Lucky you having reflexology at the same time, that must have been bliss! Take it easy and listen to what your body tells you to do over the next few days and hope you don’t feel too bad. It’s worth trying the cold cap as you did and see how it goes. I also felt it wasn’t too bad in hospital then thought I couldn’t stand to do it again next time, although this was more in my 5 cr*p days. I’m now waiting to see whether it’s worked before my next treatment and then decide if I use it again. I did get really cold overall with it on and had to ask for a blanket! I’ll also wear socks next time if I use it so won’t I look lovely?
Hi everydaymatters - we did start on the same day on FEC and yes, I’m on the same anti sickness tablets as you (just checked my chemo record book as I have no idea what they were!) They worked OK and I’ll see how they do next time to see if they need ‘tweaking’ ie stop my nausea completely as I’m such a wuss!
Lisa - good luck today, hope it goes well and the hospital part isn’t as horrible as you think.
Take care all of you
Nicky x
Hi everyone
I am on lucky devil. Still feel fine, slept much longer than usual but woke a few times and moved from my bed to the sofa (made up ready ) and back again. Had to take one anti reflux tablet at 2.30, so I need to think when to take my last tablet tonight and not go to bed straight away. I fell asleep and it had gone when I woke. Mild feeling around the head, from the cold cap as I had it on for hours and it was a very hot day. I had the air con on low in the car home to try to stop it heating up too quickly, which worked quite well. Have been hoovering and doing washing today, not what I was expecting. I had cleared the week so nothing to do. My research nurse phoned to see how I was this morning and said they are already planning my return and the new ports that I was unlucky to get, to see how to deal with it next time, which is reassuring.
Everyday matters - I have the same regime, ondansetron (4mg) iv before the treatment and then twice a day, domperidone as needed, dexamethasone iv and 3 times a day and ranitidine for reflux. I had 7 prescriptions and was surprised that they were free, I guess because I am on a trial and delivered to me in the chemo suite. I had already bought a pre paid prescription to save money!!
Lolly - please swear at me for being ok, sorry, hope you pick up in a day or two. I will not be so lucky when I change to the CFM I know already.
Nicky - I went in jeans, socks, short boots and layers of clothes and did not feel cold at all but it was in an air con room. It might be the warm feet that did the trick as I hate clod feet. The top clothes were tricky as unless you wear plunging necklines they cannot access the port. I wore a soft winter scarf round my neck and did not use the jumpers, fleeces and blankets I had in the car just in case. I would try it again if I was you, but the first 5 - 10 minutes is hell. they took mine off in the muddle so I had to go through that bit twice.
Corsa, Lisa , Gillian and anyone I forgot, (sorry but if I turn back my message will delete) thanks and how are things with you
Lily X
Hi lily,
so pleased it wasnt too unpleasant, i dont know if the reason i felt so crap, was because they said i was on a high dose. im wondering if to try different medication for the nausea or not,because what if the others dont bring any relief.
i am such a baby when im sick, and hubby is useless (dont mean to be unkind he just doesnt know how to deal with it) so the next time i am going to stay with sister for first four days after, hubby is at work anyway, so it will save people feeling the need to come to me,. and i think i will feel reasured more.
i havnt been having cold cap, so hair will be coming out shortly, they dont use it where i am.
nicky we have just over a week to go before next one (just think only 4 to go then (well i hope, cause they did say i might need more)
i am a wuss like you, but my sisters now how to cope with me, and im ok after the first 4 days (well i was last time) at one time i would never have thought what was best for me and would have made sure i stayed with hubby, but we need to do whatever it takes to make this an easier ride.
everyone keep up the good work, just think one day it will be over. and we can look back and think WE DID IT!
everyday matters,
My friend is on FEC and still feels sick for the second week each time. We think it is because the sick part comes out at different ponts, eg epi starts after just a couple of hours and finishes after one day and the others start later and finish later.
Try to build yourself up a bit because I am sure that must help if you start on as high a point as possible. I am still fine and feel like coming to look after you all.
Lily x
Hi Lily and everyday…
Lily
I’m so glad you are feeling good particularly after the ops you had to put up with before hand.
Everyday…
I woke up and thought ‘a week from today’ but, as you said, we’ll have done 2 which is a third through and being wusses or not we’ll get through it. I think it’s a good idea to be with someone you’re comfortable with the first few days after treatment. I wanted the 1st treatment done so I could judge how I felt and see if I wanted people around etc. My hubby has been great, as have my 2 girls, and not fussed too much and realised if I didn’t want to talk etc. However he was banished to the spare room for the 1st 3 nights so I could get a good night sleep. Now we’ve done one treatment we will have an idea of what to expect, which is good because you and I know we should feel fine after the 1st 5 days - fingers crossed!
Have a great day everyone and hope Lisa is feeling OK after her treatment yesterday - take it easy.
Nicky xx
Hi everyone
Lisa and Lolly, how are you today? Hope things are starting to ease a bit. Let us know how you are.
Woolly how did your first FEC go? Hope you are ok too.
Weetricia what news from the onc? Hope that went well
Everyday and Nicky go out and have fun until the 29th, you desrve it.
Hope everyone else who has posted here is ok and that we have some nice weather to enjoy. Anyone brave enough to go away at all? I have had a bright red face all day, what is that about? More people asked me how I am than any other day I can remember. Reflux is creeping up so i am taking the tablets in advance and that seems to be working so far. I started it off by eating a bar of chocolate! Won’t try that one again for a while. Also been tired today so took it easy on the sofa.
Speak soon
lily x
geeling a bit like an imposter suggesting this (yes another week gone by and no word on my chemo start date) but you might all like to know that you can get little tubs of pineapple and tropical fruits (pineapple and papaya) at the supermarket. think they’re made by dole and it’s just fruit with juice in a plastic pot.
I’ve been starting the day with one of those followed by a crumpet/muffin/toast topped with a teaspoon of good honey (manuka/local honey) since my op. I stopped doing this about 2 weeks ago nd my sking became tired looking and my lips got fracked again.
I restarted the whole pineapple + manuka thing again 4 days ago and my skin has perked up.
I mention this because some think manuka is of bebefint to the white cell count and that pineapple has enzymes that help your mouth heal and prevent ulcers.
Ask an onc near you today
Mine says it’s fine, sees no reason to recommed it but no reason not too.
HTH (Hope this helps)
Angie
Hiya All
Thanks for messages - doing not too bad just shattered, weepy and sicky and god my face is bright red!
Hope everyone can try and have a nice weekend
xxxx
Hi everyone, hope you had a nice day today in the sun.
Lisa, I am relieved to hear that someone else is red. My nurse said you amy look flushed but I look like I have been left oput in the sun and even my arms look suntanned, are you on epi? That is the only drug I am having but it is a really hefty dose apparently. I cannot stay awake, so tired but feel ok so that helps
thinking of you, hang in there it must be on its way out soon
Vertangie, some great tips, thanks. I think you need to get argumentative to get a date. Are you going on a trial because they have set time limits and you suddenl;y become a vip.
Lily x
As far as i know you have to start trial before 9 weeks after op mines is 5 weeks so push for it. Lily another good tip a friend of mine gave me when she had lymphoma was mushrooms and nuts good for white cell count i love both so eat them with everything lol
hi girls
still feeling great, enjoying not feeling sick, but eating everything in sight. i too have heard about pineapple, but i prefer the fresh one already cut up into sticks in asda. when i was really sick, the only thing i could manage was dry bread, and i just kept a roll at my side and picked at it. it really helped.
Nicky i like you am not thinking too far ahead, one day at a time is all i can manage. and who knows maybe we wont be sick.( i wish) anyway we will get through it just like we did before and we know there is an end to it.
take care everyone be good to yourselves
mushrooms and nuts… thanks for that one.
Just been down the pub and the barman there does a mean cocktail and have just been inventing vodka and ginger based drinks so sorry if I’m hammered a bit they sound too good to not try
When I was sick from stress for about 4 months dry bread saved me, just squidged it up into a pellet and nibbled it, sounds gross but when you don’t want food it works, I then moved up to farleys rusks. I then got the hell out of the city, solved the stress and found a better life
OH nicely pointed out that at least I know how long the chemo will last and when to expect to feel hideous. When I was sick from stress I’d walk into a restaurant for a meeting and literally have to run home, never knew when it would get to me, that wasn’t fun. Glad that phase of my life is well and truly over. So if you ever think I’m unbearably happy it’s because I’ve had worse… well so far , I expect I’ll have had first FEC next week.
I still can’t say fec without laughing, it was F.E.C to me but then I met the onc and he called it fec in his think irish voice and I was done for having seen so much father ted. A subconcsious voice now has to follow the word FEC with Drink and Gurls. At least I’m laughing right
Lots of love and have a fun bank holiday if you can. If you can’t then happy dreaming about what you’lll do on the next one.
Angie
Hi all
Have a good weekend and enjoy it if you can either getting over treatments or waiting for the next!
I read somewhere on here that a couple were with the nurse and had been told the lady needed FEC and again it was the Irish accent that set them off. They said they’d watched too much Father Ted. It makes me smile as well - something has to!
Well done, Lisa, one down. Hope you get better over the next few days and that the whole bit in hospital wasn’t too bad.
Nicky x
Hi everyone!!
Hope all is well - have now had my first FEC treatment yesterday after a huge hiccup on Weds where the hospital I was at lost my prescription for my chemo drugs??!!! Had already been cannulated at 12.30 and it was 2.30 before this news was got to me. Naturally was very distressed after gearing myself up for everything and thought OH was going to bop someone. Unfortunately, the chemo clinic at my hospital is only a sattelite clinic so no more drugs so the choice was wait till next week or endure a lovely 50 mile round trip to the Christie yesterday - opted for the latter as couldn’t face waiting another week.
Anyway, feeling nauseous and headachey, sore wrist and not sleeping too well along with patience tested to the limit but otherwise ok and at least that is one down 7 to go and counting!!! Hope the course of things will run a little more smoothly next time - and to think I was so optimistic at the beginning of the week!!
Love to all - Nic xxx