Hi all, I had my second cycle of Epi on Tuesday and it seems to be ok so far, after the first one had nasty mouth ulcers, but no sickness so fingers crossed no sickness this time! Very tired but can cope with that, lost most of my hair after 3 weeks so had rest shaved off, was a bit shock as it has only been a week so far and can’t get used to seeing myself in mirror, but got a good wig from hospital linked shop so getting used to that now, but my head is cold a lot so need more wooly hats!!Still got 2 more sets of Epi and then 8 lots of CMF so a long way to go yet,but fingers crossed, we are quite a crowd arn’t we all!!! Christmas will be interesting, good luck to everyone going through this horrible thing, who would have thought it, only a few weeks a go I was going along nicely minding my own business. Anyway, hope you are all coping. We won’t let it get us down too much will we?? Jo
Forgot to add that the staff at Patient Treatment Centre at City Hospital Birmingham are fantastic and really treat you well. Jo
Hi Jane
don’t panic about the hair - it might not fall out. I’m four weeks in to 6xFEC (10 days after no. 2) and I still have my hair. It has thinned quite a bit and I think it looks thin on top although everyone else says they can’t tell. It seemed to come out over two days, on about day 17 of the last cycle, and then stopped. I am wondering if it will do the same this cycle - it might happen next weekend. If I carry on losing it at the rate it did last time I will probably run out of hair in a few weeks, but I’ve already had it for four weeks of chemo - so using the cold cap has had some bonus. I have this dreadful feeling that I may go bald on top, like a monk, but still have hair all the way round. I suppose I’ll have to shave it off if that happens, although I could wear a hat for the next few months.
If the time comes for the hair to go I have decided to have a sponsored head shave to raise some money for my local cancer support charity who are providing me with free aromatherapy and reflexology. I hope this will make it into a more positive situation rather than the somewhat scary one I think it might be.
Loocie - I haven’t had to shave my armpits for a while now, and I am slowly going bald down below. I had great satisfaction individually pulling out the hairs on my legs - much better than waxing which is what I normally do. I just hope my eyebrows and eyelashes don’t go.
I might see if I can get some acupuncture to help with the sickness although I am not sure where to get this - do I ask my GP? My private health care will pay, just not sure where to start.
I am feeling a lot better now compared to last week - just a yukky mouth and very sore tongue left. I have bad headaches but I think that is dehydration - despite pouring liquids down me I think I am still dehydrated - my urine is quite yellow which is a good indicator. I think the drugs must extract all liquids from our body, or our kidneys are working overtime - I really must find ways to stuff even more liquids down.
Loocie - I know what you mean about feeling positive when you are feeling well. This time last week I was moaning and groaning and thinking I’d rather be dead and this week I’m feeling great - don’t we forget so quickly? I’m glad that’s the case - imagine what it’ll be like after our last sessions - we’ll be bouncing back incredibly quickly. Personally I’m grateful that my chemo brain has gone and my mind isn’t wandering around like a chicken. Although last night I went to pull the door of the dishwasher open to turn off the bleeping and spent at least 30 seconds staring into the cutlery drawer I’d opened instead wondering what I was actually supposed to be doing. Another ‘chemo brain moment’. We can but laugh at ourselves.
JC - tips for chemo day - drink stacks and stacks until you feel you are welded to the toilet - and keep this going for at least the next 10 days - it’s difficult but I think you need to. I find porridge and bananas are great breakfast before chemo. Bananas are the best things for sickness - easy to eat and digest and not too fattening. If you are taking ondenastron (sp) antisickness which causes constipation I really recommend getting in a stack of anti-constipation drugs and taking something the day you have your chemo - the drugs instantly stop my guts working and it’s very uncomfortable and can make you feel more sick. I find senna tablets good but give stomach cramps - my GP prescribed movicol sachets which seem to do the trick - ask the chemo nurses.
Good luck to anyone getting zapped this week or suffering side effects. Enjoy the reprive for those of you mid-cycle. I’m off today to meet a group of women on the forum here who live in my local area - should be interesting to put names to faces.
all the best
Helen.
Hi All,
Just a quick update and hopefully not too much moaning!! After seeing the gynaecologist on Thursday and accepting going down the route of putting back the mirena coil (for flooding periods) with a general anaesthetic and a bargain cost of £1800!! - I have had second thoughts and been stressing over the weekend. I have spoken to the reg this morning at the hospital and have suggested trying Zoladex to switch off my periods. She was staggered at the cost of the procedure and said yes we should try the Zoladex. It’s a monthly injection to try and get me through the chemo without having anything else to worry about. But WHY didn’t they suggest this in the first place - I am a nurse but not oncology trained. I suggested it because I knew about it but feel it should have come from them. It’s caused me so much unnecessary stress.
Reemiechick, Karen and Jane - (I think I have got that right) I will be joining you tomorrow, Tuesday for the 2nd FEC and I think first for Jane. May the side effects be minimal for all of us.
Hayz - hope I am going to be more like you second time round, well done, hope you are still feeling fine.
Helen - sounds like you are feeling much better, shame your side effects were worse/slightly longer second time round. Re the Acupuncture. I don’t know where you live but the Breast Haven Centre in London, Fulham give 6 hours of complimentary treatments to include acupuncture. I presume your local charity giving you aromatherapy and reflexology doesn’t do it? Don’t know about the GP’s - some are really into it and have lists of names etc that they could refer you privately and some won’t have because they are just not into complimentary medicine. You could also try the website to find a reputable one in your area acupuncture.org.uk
Loocie and Lynb - looks like I’m having the second lot of swamp juice tomorrow, will keep in touch for yours next week. Lynb - hope you had a good break in Cornwall.
Hair really falling out now - blocked the shower this morning lol!!
Lynn x
Hi ladies,
Thank you all so much for your kind comments and tips I have taken note of them all. I am feeling very positive now, I have been so far, through all of the 5 surgeries ending with a mx and it is not going to change now!!! I have decided that I have a bag of goodies for SE, got the wig, got my extra fluids, porridge, sweeties etc and I am not going to need any of them. I am going to breeze through this!!! Well maybe I shall need my lovely new hair but everything else is going to stay in the packets. I am going to be fine. I have a friend taking me tomorrow as OH can’t get away from work and she will have me laughing all the way there and all the way home. So, there you are, I’ll let you know in a few days if it works. What am I saying of course its going to work!!!
Take care ladies, keep positive and love to you all,
Jane
Good luck for tomorrow Karen hope you get the drugs you need! Fingers crossed it all goes ok and the sickness is not there.
Katie x
Just to let you all know I have got rid of sicky feeling with anti-reflux drug provided in the pack from hospital (advice from a friend who has ‘done’ chemo) the foggy head has lifted a bit too but still tired and not sleeping too well. Mouth is disgusting - ulcers coming up all over - do not bother with bonjela once - it made things worse!!!
Good luck to all of you having your chemo 1 or 2 this week. Another week for me - let us all know how you get on.
Had a great weekend and managed a few glasses of cava - hurrah, chinse takeaway, cornish pastie and big roast dinner - Never going to keep this weight off. lol!
We can do this - hoping se’s are as minimal as humanly possible for all of you.Love Lynb xxxxxx
Hi Lynb
just a tip for mouth ulcers - try adcortyl gel - it’s a steroid in a mucosal gel - you put it over the ulcers and it turns into a gunge a bit like wallpaper paste and covers the ulcer and stays there - it’s a bit odd and unpleasant and not nice having a mouth full of gunge but it really does take the pain away and makes the ulcers go. I put it on at night to zap them for a few hours and then when the pain gets too bad. You can get it off or on prescription. This time I haven’t had any ulcers although I have had loads of horrible spots on the tongue and painful mouth. I think I’ve avoided them by using the Difflam mouth wash as a prevention - using it religiously after cleaning my teeth morning and night and sometimes after lunch. It makes my mouth sore - don’t leave it in your mouth too long, but it seems to have helped this time round. The only thing that has been better this time round!
I’ve also heard rumours about eating ice cubes during the drug injection - a bit like the cold cap for your mouth. I may take a flask of ice in with me and sit there chewing on it - got to be better than the nasty hospital sandwiches I get otherwise.
Feeling great today, back at work and hoping I stay this way till the next zapping.
Lin, I think you are being treated really badly - they should really have given you all of the options from the outset. Too right you shouldn’t have to pay that much for something avoidable in the first place. I should complain although it’s just another stress on top of everything else that you don’t need at the moment - hope it all works out fine.
Hair not falling out at all at the moment - it’s a bit weird, I keep waking up expecting to be bald. If the last cycle is to be repeated a large amount will fall out this coming weekend - keeping my fingers crossed that it doesn’t all go. Got lots of scarves on standby just in case.
Good luck for those having the cocktail this week.
Helen.
I discovered the look good feel better workshops run by hospitals involving make up tips etc which are promoted a lot so I decided to ring today to my local hospital centre which promotes them, they have big name beauty houses which do make up hints and tips and give you a goody bag etc which sounds lovely. So I rang today as I am now bald and looking awful so need a boost and they are promoting this workshop. I got a very off hand woman who said, and I quote’ everyone is too busy, can you phone back NEXT YEAR ! That made me feel very good, as you can imagine, I just said I thought it might be a bit late next year.and she just laughed. Oh well back to the drawing board. Jo
Hi Jo
sorry to hear that. I was due to do the look good feel good workshop today but cancelled as I still have all my hair and it seemed a bit pointless! If you live near Southampton you can have my place! The woman said I could come anyway, as the next one which is the last for this year is full, but then she said that someone always cancels so she put my name down anyway. Why don’t you try ringing again and seeing if you speak to someone else a bit more friendly - they should try and fit you in if possible. Or try another hospital - I think the look good feel good website lists all the places - they might be able to find you somewhere else to go to. I really want to go to one of those places that helps with scarves, bandanas, wigs etc but I don’t think there is anywhere near me.
HOpe you find someone a bit more helpful
Helen.
Thanks for your message, I decided to try another hospital and got a much friendlier man who has booked me in for February and obviously if I don’t need it or are not well I can ring and cancel and give place to someone else. Sounds like they are very popular workshops, sorry you don’t have a scarf place, I think they are called Headstrong, have you tried them? just a thought. I bought a funny woolly hat yesterday, with little plaits hanging down thr sides, look like Heidi (if you know what I mean!) my head is cold due to baldness, but havn’t had the courage to go out wigless yet. Nice to speak to you, keep in touch. Jo
Hi to all
Been reading through this thread as due to start chemo next week and really do not know what to expect. Keep being told everyone is different so not sure what to do. Was thinking of going back to work but not so sure after reading stories of how others affected. I work in an office part time i.e. 2 and half days a week. Want to go back some of the time and feel happy that my employers will be supportive and flexible, but then again do not want to keep messing them about so not sure what to do for the best.
Jo - was good to read your comments as it seems we are on the same treatment. I am going to have 4 lots of Epirubicin, 1 every 3 weeks and then in the new year 8 lots of CMF, two weeks on, two weeks off etc. Really unsure of how I will feel, will I just feel sick for the 2-3 days after treatment or will it be longer? Worried about the hair loss as well, although consultant already mentioned cold cap which seems a good idea. Have you had this at all?
Head all over the place at the moment, just want to be ‘normal’. Really good to read about everyone though, really keeps the spirits up.
Annie
Hey to All!
Hope everyone is well!
Well after saying how how much better I felt this time round I’m on day five after FEC 2 & the nausea is still a pain! Not too bad, but still there…ice poles & jelly helping a lot, but I’m really not enjoying this!!
For the Ladies talking about the Look Good Feel Better…don’t cancel 'cause you’re not bald! I went to one last week & it was really good fun & you get a fab bag of goodies to take home with you. There was no talk of headwear or baldness, it was just showing you how best to put on makeup during chemo…we all had a good laugh for 2 1/2 hours (we over run!!). They give you all the products you need to follow the beauticians advice and it’s nice to be in a room full of people who are in the same or similar situation to you.
…Best scoot & get the kids from school…
…good luck to all with the gooey stuff this week! Hope the SE’s are short lived!
Hazel xx
Hi all,
I’ve been to the garden centre with mum today to kill some time rather than wait around the house.
We’ve been getting my things ready for chemo Thursday. Sugar free gum - check; plain crisps - check; instant mash - check; anything that will cheer me up when feeling rotten - check. I suppose I want to be as prepared as possible.
This is such a horrible thing we all have to do and i’m sure we’re all pretty anxious about the symptoms. My hair has started falling out :-(. I’m glad I shaved it - its not too long but seeing it is still a little upsetting. On the upside we don’t have to keep shaving our legs or under our arms!
Sending out good vibes to all today xx
R
Hi ladies,
Its about 24 hours since my first FEC and I have to say I’m doing OK at the moment. My chemo buddy and I laughed all the way to and from the hospital and her face was an absolute picture when they brought my bag of goodies. The Onc nurse was lovely and we managed a few giggles through it. I had a lovely heating pad to keep my arm warm and tea and coffee was on tap. She asked me about the cold cap but I said no thanks one torture was enough but she also said some ladies suck ice during the treatment for their mouth problems.
Well, I am slightly nauseous but if I tell it to go away it does!! I am taking the tablets and wearing travel sickness wristbands, don’t know if they are helping or not. I have a bit of a fuzzy head and am a bit headachey but was told by Onc no paracetamols so not sure what to do about that. Guess it will pass. A friend suggested tiger balm but the smell is a bit yeuch. Still, apart from that I’m not too bad, hope it lasts.
Nobody mentioned the tangerine wee wee!!! Couldn’t believe how quick that happened, before I left the hosp.
Still drinking as much water as poss, can’t face my usual black tea at the moment. Eating little and often as suggested. This is truly a great site. You just can’t get the help and encouragement anywhere else.
Take care, love to you all especially those back to hosp this week,
Jane
Hi Everyone,
Was zapped yesterday - 2nd FEC and feeling slightly better than 1st time, nauseuous but less, fluey, but less. Hope I am not speaking too soon …aaarrgghh! Just moping around today in and out of bed.
Helen - Yes I was cross about the mirena coil, one minute they said put it back in and then the next no way. So I cancelled my op yesterday and talked to the docs prior to 2nd zapping. I am going to risk one more period and if the chemo hasn’t switched off my ovaries I will try Zoladex (inj in the stomach). So yes I could have done without all the added stress.
Hayz - Hope the nausea goes soon, do you use omeprazole or lansoprazole? It sometimes helps with all the acid production and therefore helps nausea.
Karen - hope you have been better 2nd time round. Did you get the aprepitant?
Reemiechick - hope things were better for you too although I think you said you might be kept in overnight.
Lynb - to add to the mouth ulcers bit. I had a dreadful throat with white spots, could hardly swallow 1st time round. They weren’t really sure what it was, thought it might be ulcers further down. They have given me an elixir (in case it happens again this time), although I will be difflaming from day 1 this time, called Sucralfate. It is supposed to help sore mouths and ulcers - you swill 5mls around and then swallow it up to 4 times per day. Anyway thought it might add/help to all the other concoctions we are all on!!!
The first Look good feel better workshop I could get on was January - just when the chemo should have ended but thats ok as I will have something to look forward too.
Good luck to anyone else I haven’t mentioned…may the swamp juice be with us all in a good positive way!
Lynn x
Hi everyone,
Sorry not been on in a while. Went for 2nd lot on Monday, was really dreading it. Fortunately got the Emend drug before it started. Please anyone who was really sick last time, ask for this. It stops the vomiting,doesn’t relieve all the symptoms (i don’t feel amazing but an awful lot better than last time!). Just really tired so have to go now, but will be more detailed and hopefully entertaining next time!!
Hope everyone is doind ok! Everyday that passes is a day closer to this thing coming to an end!!
xx
Hi everyone
Hope you don’t mind me joining your thread…
just want to mirror what Trumpet suggests…
I had an awful experience and was *incredibly* sick after my first FEC in July. I’ve had the Emend antiprepitant since, and it has worked wonders… I’ve had no sickness at all. I still feel like a super-grot-bag and have all of the other usual chemo nasties, but I haven’t had to worry about the sickness.
I’l be having my 6th and final FEC-ing next week.
Good luck and best wishes to all…
Stay strong
AMxx
Hi all, sounds like you’re all doing ok?
So pleased you managed to get Emend Trumpet, sounds like it made a big difference to you. Did you ask the onc team or the nurses/pharmacist in the suite. Am going on Monday for bloods and onc so will ask then. Have to have a PICC line in on Tues so not having my infusion til then. Did you get to see Dr Miles?
I had some acupuncture today which by all accounts shoul help, but one thing she recommended is to wear the travel sickness bands (just reiterating your point JC). Apparently they are very effective - you have to wear them
orning, noon and night tho.
Keep perky lil ladies :0 sounds like you’re fighting the good fight - in style
xxx
Hi All,
I’m day 2 today - after 2nd lot of swamp juice and still feeling nauseous but slightly better than last time. I echo the use of Emend.
Loocie - Do you see the doc before going in to have your chemo, because that’s when I asked them for the Emend the first time round. It was then prescribed on my chart and the pharmacist dispensed it. You take the first tab 1 hour before your chemo, 1 the next day and the final one the following day. Also I am wearing the travel sickness bands this time - not sure if it is having a placebo effect this time but the nausea is slightly better. Good luck for Monday and Tuesday.
Keep strong everyone
Lynn xx