Hi … another question - depending what time you have your chemo - how on earth do you get 3 doses of steroids in ? Nurse suggested getting them all in before 6pm - does it matter how close you take them on this first day?
If so … 8 minutes before the next one!!!
Hi Carolj,
I’m a teacher too! I had to leave school at the end of April and was told not to plan going back until at least Easter 2009. Couldn’t even go back in to say goodbye to my Y6 class, which was very sad for me. I started Epi-CMF in June and agree with Lily about the side effects - though everyone does seem to have different experiences. For me the vein pain with Epi has been the worst, alongside having a fuzzy brain for 10 days, needing to eat immediately and sometimes constantly, and heartburn (probably because of eating constantly :-). I’ve had two CMF’s now and definitely find them much easier.
I only had steroid tablets once after my 3rd Epi (2mg Dexamethazone twice a day for two days) - to see if it would stop the constant hunger (it didn’t). I was told not to take them later in the day as they keep you awake, so took them early in morning then early afternoon. I wouldn’t have thought 8 mins apart was good!
Hope that helps,
Shelagh x
Hi Shelagh
I was the same - left work Friday 13th Sept - great timing , just started with a lovely new set of 6 year olds then op on 15th Sept. Think I’m planning about 9 months off but as you know it’s hard to plan anything at the mo. Had a good night’s sleep after the first epi - once the vile nausea wore off so must have done the Dex right!! I just think well - that’s one down … Where are you being treated?
Keep in touch!!
Carol x
mine went OK (I’m being treated in Barnsley until rads, then Sheffield 
how about you?
I only have 2 doses of steroids a day to take and she told me no later than lunchtime for second dose, I am feeling rather sick when the anti-sickies wear off so I know I need em. I think I just feel really fuzzy like a bad hangover without the booze lol. OH yeah and I didn’t sleep too well, woke up a few times and was wiiiide awake!
thats one down 3 to go on the epi’s!!
hope you’re all well and that time is flying by for you until the chemo ends.
hi ladies, iv just registered and found this thread as it fits where im at now. Hoping you don’t mind one more buddy, as iv just had my first Epi a week ago and have three more followed by 4 lots of capecitabine tablet treatment (im on the tact2 trial too) , radio and reconstruction to get through in the months ahead. Its really interesting to read about others experiences and iv found mumsnet useful in the past so Im looking forward to tapping into this in the coming months. Iv resisted genning up to much till now because i didn’t want to overwhelm myself but im ready to meet others in a similar position now… I feel like iv turned a corner today and yesterday but day four and five were horrendous. The nausea was vile. Im just tired now which i can totally cope with!!!
Hi,
just wanted to wish you all well as you climb back out the nuclear bunker. I am going back down the dark hole on Tuesday and then again on the following Tuesday. I have to say i am glad to be off epi but it is one of the big bad boys that is recommended as it kicks C up the … When I saw my onc after the 4th epi and rI was really struggling so had to have another week off, he said that has done it on its own, from now on you are just pushing your % up with CMF even higher. So do battle on if you can because the side effects go eventually but you only get one chance to try to complete the whole thing. I laid for 3 days wishing I could be unconcious but I am glad now that I pushed myself to that point and completed it. I was told to have alll my steroids before 7 pm but did not have 3 on the dose day as I had it iv then. On CMF you ahve to take 4 together in the morning and that is it. It still keeps me up that night. Try starting a very big jigsaw it works for me to focus the brain on something.
Lily x
hi carmel and welcome! hope you find lots of help and support on here xxx dont know how much help i can be but i’ll try my best.
lily, did your steroids make you go bright red? i look like a lobster!!! :0 OH says he thinks it might be the steroids, his mum went red when she was taking steroids.
had a much better nights sleep last night.
Carol, hope you are doing OK !
Hi ladies
Internet now fixed so hopefully no maore gaps from me!! First epi on Thurs - feels like longer ago!! Hangover headache and felt vile the first evening - v sick, but didn’t throw up! I’m being traeted in Basingstoke, then to Southampton for rads. As I was having my first treatment met a nurse who was having her last - and I thought, that will be me in however many months!! As you say - 1 down, 3 to go…
Welcome Carmel - great to hear from you! I tried not to read too much stuff as it made me too scared!!
Lily - if the epi is going to kick the C up the … that’s all I want to hear!! Good luck to you too
xx
Hi,
just lost my post. Grrrrrrrrr. I do have a tropical tan but it lasted much longer on epi as the dose of steroids is spread out. On CMF I have to take 4 first thing in the morning, all together. It makes me a bit manic and excitable, my posts sound like I am a bit high! Then I flop back down to earth as they are only for 2 days. Unfortunately they are giving me the steroid face, which I hate, but it goes a bit in the last 2 weeks each time. Just squeak loudly to the doc and nurse if you feel nauseous as there are tons of other drugs to try, don’t suffer in silence. I realised that I was suffering from acid in the tum rather than nausea, so needed different tablets for that. Anti sick tablets give dire constipation, so keep an eye on that and don’t go over 2 days before taking something or you will regret it, spealing form experience here. CMF gives me the runs so now cannot eat any fruit or veg. I get 2 weeks of solid carbs or griping pains. Heading back to my carbs on Tuesday - woopey. By the way that weird carb diet does not work, I am living proof!
Take care and if the weekend is not too good, I promise Monday will be a different kettle of fish.
Lily x
Thanks for the welcome ladies, I didn’t know about steroid face etc but everyone keeps telling me i don’t look ill enough so i can only presume the chemical tan is one of the ‘perks’ My mantra last week was I might not look like shit but believe me I feel like… . Im on my second week now and I feel so much better. The tiredness is strange tho, a little unsettling. Im lolling around today… iv had a walk this morning so iv earnt it. Im going to try and do a bit in the mornings and then kick back in the afternoons and see how that suits me. Im so not used to being ‘ill’ so this whole experience is really new to me in so many ways. The thing im most disappointed about is not being able to swim. Since my mastectomy and node clearance i found it really helpful for getting mobility and flexibility back. Now iv just got to do my physio instead which i find really dull… Apparently there are just too many dirty bugs in the pool!!! have a nice day all.
Hi all
havent been on for so long. just finnished epi and had 1st cmf wednesday. felt ok till today now I’m flagging, but nothing too bad just snoozed a while. Got real bad heartburn, but have had to have anitbiotics for throat infection and when I read lable it said do not have milk with these and i’d just had a lovely milky tea. Oh hum.
Hope all is well with everyone and the effects arent too long lasting. Keep yours chin up as high as they can go and smile.
Love and hugs to all
Bridie
Hi Carol and all,
I’m in Newcastle-u-Lyme, next to Stoke-on-Trent not the one really up north. Glad to hear the steroids went ok Carol. I have an injection of Dexamethasone and another of Ordansetron just before the chemo treatment - not tablets. Then Ordansetron tabs for 3/5 days which give me severe constipation - but I found I only needed them for 2 days after the CMF. My consultant has given me Lansoprazole to combat acid stomach - which works really well. Strange how the treatment differs so much around the country init.
Like you Lily I’m back down the CMF chemo tunnel on Tuesday 14th, then again on 21st. I had a Hickman line fitted on Tuesday cos my veins have been playing up - a bit eeky as was done with a local anaethestic, but beginning to be less sore now. It gets used for the first time for bloods next Mon - even more eeky, but I’m sure will be less hassle than I’ve been experiencing.
Love to all,
Shelagh x
Did any of you epi first timers try the cold cap? Id heard such terrible stories about it that i nearly didn’t. I did in the end and managed it fine, in fact it wasn’t as bad for me as i had anticipated. Heavy more than anything… correct me those who know, but i understand that the hair starts to come out after two weeks if its going to so I suppose Ill know soon enough ( Im on day 10). I think im ok with the hair loss, but don’t like the idea of losing eye brows and lashes. Bridie, hope your antibiotics do the trick and you feel a bit better. Nettie has the lobster effect subsided ( if you read this tomorrow) Im getting treatment in sheffield so I noted you are barnsley way so we are in same neck of woods. Iv found the sheffield services to be fantastic so far. Everyone has been just great with me, especially through the breaking lots of bad news phase during the summer.
Iv learnt here that watery eyes is a symptom, seem to have that and now iv got the hear burn so even though i feel loads better these are all odd things to contend with aren’t they.
hope you are all doing ok .
xxx
Hi,
I used the cold cap for the epi but stopped now on CMF as not needed. I have kept hair but lost the top, looked like a monk.LOL That happened on dose 2 and they think it was not on tight enough so after that they nearly snapped my head pushing it down. My hair was growing while on epi and I also kept most of my eyebrows and lashes. I am glad I stuck with the cold cap, despite wanting to throw it across the room several times on the later doses. I have not worn a wig at all justa large stretchy hairband to cover the thinned top. it looks scruffy but each one that stayed with me is precious!!! LOL. It is filling in really quick now and over an inch long but very fluffy like baby hair.
Shelagh I will be thinking of you on Tuesday, being in the same boat, so to speak. I have a big cooked breakfast before CMF as it gives me stomach trouble. How are you getting on with CMF and the stinging nose? I have to have minediluted in a bag on the slowestspeed and have piriton, as I have a reaction at the very end. So now I sleep right through it,time passes very quickly though.
I have a port which was put in under a general but it is probably in the way for rads so might need another op soon. They will take it out under a local . Was it terrible as I am very jumpy about having it pulled out while I am awake. One tube is right in the top of my heart and the other tube I can feel up the side of my neck. The port itself is in the BC side and too close to the tumour site. Great planning eh! I have only had blood out of it once and terrified the canteen staff as I had to wander around with tubing full of blood. I did not feel anything but every other time I have to have it out of my inner elbow. I had a port put in before my first chemo dose as they said my veins were too narrow and they kept hiding! Once I got over the initial discomfort and the chemo staff managed to stab the port rather than me, I was really pleased. No vein trouble or aches at all. Carmel I miss swimming too and can’t face anything energetic at all.
Thinking of you all and take care
Lily x
Hi
I miss swimming too !! It used to be such a good way of de-stressing - not that I have the energy to do anything but walk and put the kettle on at the mo.
Lily - I didn’t really understand about the port - but sounds as if you’ve not had a good time. How long till the end of your CMF? Thanks for the encouragement about Monday… have felt rubbish this weekend & of course as it is my first Epi I don’t know if it will get worse, better or just different each time!! But I’m still counting off the days!!
Nettiespaghetti - how are you doing?
Take care ladies
Carol x
carmel, are you under weston park care then? (dr bridgewater?) I’m under dr Bridgewater but recieving treatment in Barnsley, and I have also had fantasic care throughout everything! and no, I’m still red raw lol, just one more day on steroids, maybe then it will go
lily, that port thing sounds a biy scary, hop i wont need one!
carole, heres hoping that this is the worse one and the rest of the epis will be O.K *crossed fingers*
Felt rubbish yesterday, really weak and sickly (wasnt sick just felt sick) most of the day on the settee with my daughters spongebob squarepants fleece blanket over me, every time I had to move anywhere, I got stomach pain and burping :o cant really tell if it was bad wind/ acid or feeling sick, going to get O.H to check out side effects on all the tablets the gave me see if it might be any of those.
keep strong and smiling
love Nettie.
Hi,
I have 2 more doses of CMF to go, but they are doubles so 4 trips in to the unit and 4 blood tests! My next one is this Tuesday and the second on the Tuesday after that. I hate the second week. I finish chemo mid November, it is a 28 week treatment. Feel like I have been trudging down this road forever sometimes. LOL . Still I feel sort of safe while on chemo, if you know what I mean, so will probably panic when I stop it. Then off to get fried with rads after that and surgery to take the port out. The port might sound yuk but once it is in the chemo is very simple with no looking for veins. You have one if your veins can’t take the chemo and they said mine were too thin from the start. Epi hardens the inside of the veins making them even narrower. As epi/cmf means 12 visits they said I would definitely need one in the middle so might as well have one beforehand to save arm pain, etc. Some people have their blood taken out them but in my area only the unit staff can touch the ports. Carol my reaction to epi lasted 4 days and then felt average. Just watch the constipation, particularly on later doses with epi. Hope this next wek is much better for you and the one after will be brill so start planning some nice things to do. Your immune system will be down soon so avoid bugs as a cold will be horrible at this point. Nettie hope you start to feel much better soon too. I found my reaction to epi varied, but when I felt a bit better I got really emotional instead!! If you keep a diary of your bad days you will find it follows a pattern and you will feel more in control next time.
If it cheers you up, out of the people I chat to, those who found epi tough had a breeze in comparison on CMF and you get more of them. Hope you can look forward to easier days too. One down, three to go.
Lily x
Nettie, Im under Prof Coleman at Western park… but i know barnsley well. A couple who have been mega supportive to me and my family live in Wombwell, so we get out there for us sunday dinner quite often!!
Im feeling normal now… not normal go out for a run or anything but bloody normal after all those dodgey days. You are right Lily, Im planning plenty for the coming week and hoping to make the most of feeling well. The thought of getting zapped again is not a pleasant one…
Its good to hear about your experience of the coldcap lily and that it worked for you. I will def give it another go and hope they put it on right. When will i lose eyebrows/lashes/bodyhair if im going to?
x
Hi
I’m also having my treatment at Weston Park but with Dr Hatton. I’m on the TACT2 trial arm 2 so am on accelerated epi and then cmf. I had my 2nd epi last Monday and am due back for blood tests on Friday to make sure I can have my 3rd next Monday. I felt reasonably well with my 1st dose but this one has been worse. I had nausea and heartburn from Friday until yesterday. It’s so long since I was pregnant but can still remember feeling like this. I’m going to ask for something for the heartburn when I go this week, hopefully that will make me feel better Anyway enough of moaning, I’d much rather get it out of the way in a shorter time!!
On a lighter note I’ve got tickets for the Abba concert at the Sheffield Arena tomorrow night, so really looking forward to it. Hope there aren’t too many folks with colds about though, don’t want a delay at this point.
I didn’t opt for the cold cap, didn’t fancy the extra time in the unit. I’m now on day 23 from the start of treatment and my hair is falling out quite fast. I had it cut into a short layered style the first week and it’s now a lot shorter and thinner but still covering. I’ve got my wig ready.
Anyway girls take care
Jackie
Hi
I think I’m the only one in the south ladies!! Jackie - enjoy every second of the concert - lucky you. I’ve only just managed to see Mamma Mia!! I’m on day 6 after first epi - and it’s as if the nausea/headache fog has lifted… we shall see if it lasts. Good luck to you all if you were having more treatment today, I’m thinking of you - hope you’re ok
Carol xx