Hi everyone
i ordered a lovely headband scarf and a couple of sleep caps from the Anna bandana website, my order came withing 2 dayS and they were really good quality and reasonably priced. I asked my Bcn why I would need sleep caps and apparently they serve a few of purposes. Some ladies feel the cold when they are in bed and the caps help them keep warm, I don’t think this will be my problem as I’m menopausal and suffer from night sweats!! she also suggested that I wear one when my hair started to fall out as the hair would stay inside the cap and it is not as distressing as seeing your hair on the pillow or your bed.
Kim x
Hi everyone, I will be having the 3rd chemo on Fri. The E CMF that is, no cold cap this time as head shaved now.
Lori you have really helped me, so thank you for that. Is anyone else on E CMF?
I am coping ok I think the Prozac is helping me.
i am dreading Fri but I guess that is one less to worry about. What happens to nails? Could someone explain.
I too have a dog a beautiful Cavalier called Louis.
debra xxx
Loius
nails can be affected by the chemo as they are constantly growing so you can get ridges in them showing every cycle of chemo from the nail bed. I don’t know what difference it makes but I was told very dark or black nail covering (varnish or gel) can reduces the impact on them…I have dark purple currently to see if i can lessen the impact…
kate
x
good morning girls
day 5 has not started well, the sicky feeling has now got the smell factor. everything is making me nauseas, soap! mouthwash! washing up liquid! whats that about?? even my lovely bayliss and harding alcohol rub! not good and i think my rather ambitious plan of getting a few days back at work might be put on hold.
i have discovered the properties of the pineapple after being told to stay off fruit for a while due to a bout of gassy burps ( so pleasant) , thank goodness ive got a ginger bic and this morning i now know that after eight mints are edible, smell nice and are refreshing to the bad tasty mouth effect. stocking up for the future!
so tell me girls, at day 5, how long may these delights of the senses continue? do they wear off soon?
hope you are are all as well as you can be,
happy sunday
angie xx
FEC CYCLE 1 -Day 7
Good morning! Actually ts afternoon and i am still on the sofa in my pyjamas. i feel fine, just cant be bothered to get dressed. Just watching all those amazing runners in the marathon on TV.
Primrosehill - I also have spots, like being a teenager again grrr.
Linda - what a rubbish time you’re having, hope you are better soon.
Shona - i am actually called Amber, but think I’ll stay as spudgirl (love of all things potato-y) -wish i had thesame flowing locks of your Amber though 
Re S/Es -
Pasta was the lunch i had in hosp when i had chemo . I was fine at the time but now i cant even think about it without heaving.
Tea with milk - I normally chain drink it , now i can’t bear it so on fruit tea, which smells delicious but tastes nothing like the smell.
Generally feel slightly nauseas all the time, however i stopped the anti-sickness tablets on Thurs because I still felt nauseas while on them, and you can’t drink wine with them , so wine won.
Angie i am with you on ginger biscuits and After Eights, also TicTacs extreme mint, and orangy chewy sweets .
SG xx
E-CMF day 3 cycle one
Hi all,
Louis , I’m on same drugs as you. There don’t seem to be many of us! I’m having 4 cycles of Epirubicin, followed by 4 cycles of CMF, with radiotherapy in the middle. you’re further on to me so any tips, re side effects appreciated.
After dreading 1st infusion it wasn’t as bad as expected. glad I had Picc line put in now. Started feeling sick about 2 hours after I got home and continued to feel dreadful all night. Didn’t sleep until I went to sit up downstairs, as I felt more sick lying down. got about an hour at 4am. Then started taking all the anti sickness tablets and steroids as instructed, felt MUCH better. Will ask if I can start them the night before next time! Although I did have some at hospital and 1 ondansetron before I went to bed. Still feeling nauseous, but much more manageable. The only things I’m managing to eat are plain boiled pasta or mashed potato everything else is a def no no.
Amber spudgirl : I usually am a complete tea addict but it’s disgusting at the moment with milk. Can’t face fruit teas. Think I’ll try just weak black tea. the other thing is tomatoes- just the smell makes me heave!
How long after treatment do people usually get sore mouths etc- fine at moment on day 3. chemo nurse told me to sip iced water while the drugs were going through because it reduces mouth probs- hadn’t heard this before, but I did it and no probs yet. Maybe it’s too soon?
Linda Hope you’re feeling better and back home soon. I sympathize with you about tablet. tried in bed last night, wrote long post and then lost it all! Can you get someone to bring you in more palatable food- even a more interesting sandwich might help!
realize I’m rambling on so have a great day all
Maisiecake /Mel ( I think there’s another Mel as well?)
Hi Angels,
Just a quick report to say the hospital has released me on bail. They wanted me to stay in another 24 hours without any antibiotics so they could monitor me in case the infection flares up. I promised to self-monitor, which is what we all do anyway, and was why I ended up there in the first place, not because i felt ill. They never did find the source of the infection, if indeed there ever was one, despite testing just about everything. So glad to be home, and so hoping I don’t end up back there.
TCH cycle 1 day 13.
Hugs, Linda xxx
FECT cycle 1 day 1-3.
Sorry for the delay in posting. I’ve had a bit of a rough time. The infusion went well at 9:45 and I felt great until 2:00pm about half an hour after eating. Despite taking anti sickness meds I couldn’t keep anything down after that and ended up being admitted on day two for an overnight stay in hospital for more anti- sickness meds and rehydration. Fortunately since I came home yesterday I have felt much better and I have more anti sickness pills to keep me going. Today I am noticing more differences in tastes and smells, which is interesting. Pineapple and orange squash seem to be the winners for me.
Linda it sounds like you’ve had a rough ride too. I’m glad they’ve let you out. Amongst everything it’s pretty boring being confined to a bed in hospital.
Amber I’ll keep using that name if it’s ok with you or I’ll end up getting very confused. I’ve git a 5 month old labradoodle pup, called Daisy. Shehas been a godsend in giving me something positive to focus on through this journey and is great company when I’m home alone. Your pup looks lovely and I hope she gives you as much pleasure.
Lori - well done for leafing the way with the hair. You’re an inspiration. I think I’m going to crop mine at the end of the week before shaving it too.
Fec-t cycle 1, day 11
Afternoon Angels - glad you’re home Linda. I went off tea but by day 9 it tasted great again, so hang in there! This is me with my new short hair. Head a bit tingly but hair not falling out yet. Had a couple of glasses of wine on day 8 and felt really ill so tried a half of cider on day 9 and again felt awful in the night and next morning, so may have to avoid the booze during treatment. Got a sore mouth starting yesterday - using alcohol free Listerine and chewing gum after food which helps. Inspired by the idea of the April 2012 forum members meeting up.
Take care everyone - I do feel it’s getting easier. diggywiggy.
Fec-T cycle 1 day 20
Hi girls,
Well Pixie Lott is now Jessie J! My head has been really sore the last two days, got up this morning and couldn’t bear to touch my hair and it had thinned a lot so I phoned my friend to come down and shave it. The soreness has gone and it feels really empowering, must remember to put a scarf on my head before I answer the door in case I scare the postie! Bought some Aloe Vera to sooth my scalp and it works.
Linda- so glad you’ve been freed at last, what a nightmare especially when you felt ok
Debra - you sound a lot better, stick in there and good luck for Fri
Spudgirl - another Amber, it’s a lovely name not that Iam biased or anything
Maisiecake - try Corsodyl mouthwash it works for ulcers etc
Pauline - Iam sure the hangover was worth it, good to enjoy normal time out
Mel A - sorry to hear you’ve had a rough few days but glad you’re out of hospital. Daisy sounds a real cutey, they bring us so much joy and defo help n this journey. Amber is a proper girls girl and so funny. Iam going to continue using Amber as my name on the forum.
Moira, Judy, Laura, Angie, Kim, Kate, Maisiecake, Mel A and anyone I have forgotten, hope your s/e are minimal
Bloods tomorrow and all going well Cycle 2 on Tues, can’t believe it’s come round so qquickly
take it easy Angels xxx
Thanks everyone for your kind wishes, and to add to the confusion, although most of you know I am Linda, my user name is Lola after my gorgeous boxer dog!
Amber - your beautiful goldendoodle is the same breed as my daughter’s dog, Colin. He is 4 now.
I hope my hospital experience is fair warning about your low immunity period. Day 10 for me and i was as bright as a button. Despite being on Tax I had very few side effects and was sailing through it feeling very guilty that others were having such problems. I was religious in taking my temp and thank goodness i was because on day 10 every reading was above 37 when I am nomally in the low to mid 36’s. When it spiked at 38 I rang in and was told to go in ASAP. I did not feel poorly at all, yet my neuts had dropped to 0.1 which is dangerously low, and I was put on immediate IV antibiotics.
So please everyone, be vigilant with your temps even if you feel well. I use an ear thermometer, which varies considerably between ears, so I always take both ears and use the highest reading.
Take care everyone, and Mel - I hope they sort you out with the sickness for your next cycle. What an awful time you had.
xxxxxxxxxxxxx
Fec-T clycle 1 day 13.
Started with a dry mouth friday night and now have a sore mouth. Is this what everyone is using the Corsodyl mouthwash for.
Got a call from hospital to say white cell count is low so not to party this weekend. Has anyone else had this yet? Fingers are now sore. Should I be painting them black and why havn’t heard of this yet. No sign of hair loss for now.
Linda great to hear your out and ok.
Diggy Will try chewing gum.
Lv n Hugs to all. Sandy
FEC T Cycle 1, day 14
Well AAAs woke up this morning to find my lady garden shedding so just took the razor to the rest lol! They say this usually goes first then the head hair follows so expecting to lose my mini mohican in the next couple of days 
Re mouth problems - i got them very quickly, day 3 I think. Cordasyl mouthwash 4 times a day and a baby soft toothbrush done the trick for me.
Re work - I have been ‘working from home’ since diagnosis however, some days that means doing nothing at all and others I’ll do a couple of hours. I am very fortunate to have really understanding bosses who are happy that I do what i can, when I can and work at my own pace - no deadlines or anything urgent. I find doing a little bit helps and is a welcome distraction. I wouldn’t however go into the office as too many bugs etc go round
Sorry I haven’t named those who were asking about the subjects above - I’ve not mastered the art of looking at previous page posts (to recall who said what and get names) in the middle of writing a new one - any tips?
Primrosehill - sounds like you are getting bloods taken between cycles? I don’t get this so wouldn’t know if counts are low. Guess I’ll need to rely on how I’m feeling which glad to say is very well
Sounds like a few people are having a rough time - hope you all feel a bit better very soon
Take care
Pauline xxx
Pauline - when I was admitted I was as bright as a button, and felt really well. The only symptom I had of neutropenia was a raised temp yet my neuts were down to 0.1, so you can’t rely on how you feel.
We don’t get mid cycle blood tests either. What a good idea they sound.
xxx
I am confused by this I only have one blood test the day before chemo I also have an injection 24 hours after chemo for white blood cells. Also no one has mentioned a port cath although it seems to be common on this forum how did this procedure evolve I am treated at Macclesfield hospital which is a satellite of christies in Manchester the onc is based in christies and I will go to christies for radiotherapy. Any info would be gratefully received.
Pammy - i think most people only get the blood test just before the chemo to check white cells have recovererd enough to go ahead with chemo. All of the hospitals seem to offer slightly different ‘services’ so think it is just a postcode lottery or maybe there is a specific reason some people get mid cycle bloods done i.e. other health concerns, I’m not sure to be honest. I don’t get the injections either so not sure what the criteria for thoses are, maybe to do with the chemo drugs we get?
Linda - thanks, I have to admit I am not great at remembering to take my temp as I feel ok (I can feel you cringing!!) - lesson learned!! (also not convinced about thermometre as it was out the £1 shop!!! think I’ll invest in a better one now…
Pauline xx
We have a blood test ten days after each cycle. We also have the injections to boost white cell in the tummy each day for seven days after chemo therapy (I say we because my friend is having exactly the same as me at the same hospital). It sounds like we are different maybe different drugs or because mine is chemo first then surgery or just different areas. I don’t know. What I do know is when the chemo suite rang to tell me the count was low they asked me to take my temperature over the phone. Like Linda I felt as bright as a button at the time so It looks like temperature is the key to how well you are. I take mine first thing in the morning and in the evening as a routine just in case.
Pammy I have canula in the back of my hand which works ok for the chemo but when i did have the blood test 10 days after my veins went awol. 15 mins the vampires were at it in both arms before they got it. I wasn’t offered port cath either and am now dreading next blood test.
Thanks Pauline now have corsodyl. Off to mouthwash (again). Sandy x
AC cycle 1 day 5
Hi All
Good to hear you are home Linda and I think your tales of 5 days in hospital is a good reminder to us all to keep on top of any bugs/temps we can!
I have again had another great day - think I’m being lulled into a false sense of something not too bad! I slept well until about 6.30am, got up about 8.30 and have been in the garden for most of the day! We had lunch on the patio - pepperoni pizza which I’m sure I shouldn’t be able to eat happily on day 5 without any nausea/sickness but I’m taking it while I can! I haven’t been tempted with a glass of wine yet though - even though I’d love one I’m thinking that might just tempt fate!
Tomorrow my OH is going to the office(rather than working from home) for the first time since my chemo last wed so I’m going to have a lazy day - perhaps even a PJ day!
Hope you have a good nights sleep tonight and the nausea/sickness abait soon
Kate
x
FEC-T cycle 1 day 3
hello ladies, I’ve just had a catch up on all your posts, my brain is a bit like mush today, so all the names are mingling into one, but it’s interesting to read how your all progressing. It gives me an idea of what to expect, which is good, its frightening not knowing what to expect but reading when the different s/e happen and how you are getting through this is a really big help.
crap night sleep again last night, woke at 1,2,3 and 4ish, that’s when I got up, had some tablets for heartburn, put my travel bands back on, had some ginger and lemon drink then some hot chocolate and Nytol and went back to bed, I slept for a good 3 hours then, so nytol and travel bands are gonna be coming to bed with me tonight.
Hope you all have a good night with minimal s/e, take care xxx judy
Dear Maisiecake,
i seem to have one good day and then the next day no energy. I tried the cold cap but it did not work. I have found juicing helps especially beet root apple and carrot with ginger. Also I make fresh smoothies Every day. For the first 3 days after the chemo I feel like I have a hangover with no enjoyment the night before. They have given me anti sickness tablets not sure about steroids though. Dreading Fri although it will be the 3rd one. I have been very depressed lately too I can’t bear to look in the mirror. what is the difference between this chemotherapy and FEC?
debra xxx