glad your 3rd epi went well jackie, and i hope your body is so used to it now that it doesnt effect you as much this time
love nettie xx
Just one more Jackie - hope you’re ok, glad they did it in the end. Sounds like the mouth suffers more with each treatment? Mine’s just starting getting sore.
Nettie - good to hear from you again - how are you doing?
And welcome mivvi - sorry brain’s gone to mush - have you just started e-cmf like me?
xx
Hi,
hope this finds you ok, but I am sure someone is under the weather as it goes like that. Mivi I just wondered whether you got arm 2 or 4 on the trial. I am on arm one of that and started in May. As Jackie said the CMF is a slow route but you might be on xeloda if you got arm 4. I hope your first epi wasn’t too bad, it is a sharp learning curve and not knowing what is going to hit you and when is tough. If you keep a note of how you were each day it helps you feel more in control and is easier to plan everything else you need to do in those 3 weeks. You do get into a pattern of when you do and don’t do things, which makes it easier over time. Well a little easier. Jackie - how did you get on with epi 3 ? I hope it went ok. I found my side effects lasted longer on epi 3 and I went into 4 not really better which was a big mistake. Anyway that part will be over before too long. When I finished epi, my onc said well you’ve done it just with that, so I was glad I persevered and saw it out on the full dose. Glad after I finished it of course! I have found CMF to be gentle as I feel myself again but my insides are dodgy on it, so have to have a high carb, bland diet. It is the length of it and the double doses that are the real challenge on day 1 and day 8 and so 2 blood tests too. You just need lots of encouragement and try not to think about it too much. Really surprised to find myself going in for number 10 or dose 7 part 2 in the morning. The last quarter has gone faster but had a low bit in the middle. Carol react quick to the mouth if you can. When mine is bad I used Difflam after every time I ate but also had to ask for other treatments, most of which were foul but worked. The other nicer thing is to keep bottled water in the fridge and squirt it in your mouth all through the day, just tiny bits. Eating cold lollies straight after chemo works on it too. Nettie when is your next, I have forgotten sorry.
Hugs to everyone and just keep chugging along and then before you know it, the finish flag will be in sight. Promise.
Lily x
Hi Lily
Good to hear from you - have been reading lots of the posts over the last few days and your advice is so appreciated - I’m on the case today! My world does seem to be full of “how do I feel today” … do they only give you 4 epi because the side effects just get worse and worse…
. Anyway I can do this … Good luck with your dose 7 part 2 - I’m so glad you have found CMF to be gentle after the epi… apart from the diet/insides. Has anything apart from white sliced been recommended for you? And you should be finished by the new year? Sorry - cotton wool brain I’ve forgotten , where are you in the uk? !
Hugs to everyone too xx
thanks lily, your experience is much appreciated, and my 2nd epi is on 30th
my mouth hasnt been too bad, just the tip of my tongue a tiny bit sore, will use difflam and hopefully, it wont get much worse.
carol, I dont know about you, but im secretly bricking it for dose 2, on dose 1 it was a fear of the unknown, but now its a fear of the known :o we will be OK wont we, *hugs*
and welcome mivi xx
love Nettie xx
Hi all just been reading all the posts trying to figure out whos who and on what.
Im on tact 2 arm 1 - 4 x 2wks epi then 4 x CMF, similar to jackie i think you are 3 wks ahead of me. I think i will b catching up to carol, netti and gabba quite soon.
Would be feelin good except for sore throat, penicillin kickin in now, should have taken out shares in lemsip!
I was told by my onc treatment and side effects vary from person to person, only thing certain is hair will go and i would put weight on!
Dont mind the hair but as im a big girl anyway cant afford to put weight on. Am trying to plan meals etc. Have started excercise cd but not last few days, felt too ill/hot with throat!
Hopefully going to make this a positive experience getting my health back into shape, just turned 50 was busy and stressed, going to start making time to look after myself.
Good to hear all other experiences some of you seem to have a bad time with veins / ports, not heard this before, children’s butterfly needle sounds good.
Im in southport, a team from clatterbridge, liverpool / wirrel come over to do chemo om mon am, saves alot of travel. All nurses during operation and other visits have been fantastic.
Look forward to hearing from you all take care x x x
Hi
Nettie - yes we’ll be ok - bloods on 29th, 2nd epi on the 30th. Hair coming out in handfuls today - feels weird even tho I was expecting it. Maybe it will be the clippers tomorrow… Just hope the cumulative epi effect isn’t too bad - evryone seems to say it is !!! Hope you’ve had a good day
Mivvi - hope the throat gets better soon
xx
Hi
Had my visit from the district nurse today for my GCSF injection, all good so far. I’m just keeping my fingers crossed that the Ranitidine works on the heartburn this time as I can cope with the rest. I can’t believe how quickly my first 3 doses have gone, you’ll be the same mivvi. The steroids were working overtime this morning, cleaned the kitchen, did some washing and ironing and then went out for a walk. I hope this effect lasts a couple more days so that I can finally clear the mound of ironing that has built up over the last few weeks. OH keeps saying he’ll do some but I’m still waiting. He’s still got his cold though, so I’m looking after him at the moment.
Good luck to both of you, Nettie and Carol on 30th. It’s good to be able to tick off the treatments.
I hope everything went OK for you Lily today. I got it wrong yesterday when I thought you were just waiting for your last two. Chemo brain strikes again.
Take care and keep in touch
Jackie xx
Hi,
well visit number 10 went really well and no problems at all with the port. Got stabbed first go and no pain at all thanks to the numbing cream I keep at home for the next one. Anyone with a port ask for it. Feeling very wide awake from the steroids and also because the piriton has made me snooze all day and I don’t need much sleepy anytime. I have to say to anyone on epi/cmf but mostly to those on arm one of the TACt2 trial, I felt like it was going on forever. Thanks to lovely people on this forum constantly encouraging me the end does suddenly appear after a long journey. It is a gentle route compared to some with lots of time to go and do things, so make sure you get out on the good weeks and eat lovely things and make memories for the long stretch. It is considered a very good trial so worth sticking with if your health allows. I have been constantly told that the big epi dose we take alone will do the trick and after that we are belt and braces moving up the percentages even more.
I found number 2 much better as I knew what to expect and felt more in control, but 3 and 4 accumulated abit more for me. This is mainly because I tried to tough it through the side effects and did not ask for help quick enough. Others sail through the same, so hope you are lucky. Nice to be half way through that bit. Carol I am in Essex, as you asked. The number of dose is fixed by evidence from thousands of brave people, over many years who have gone on trials so they can work out %s and doses. I finish chemo mid Nov, then need surgery to take my port out before 3 weeks of rads which will tip into the new year because of the surgery now. Then years of tablets as a safeguard. Glad to help in anyway, to return the help so may others have given me. It has kept me sane, well mostly! I had no diet advice, just found out the hard way, but my CMF tummy cannot tolerate fruit, veg, juices, sauces, anything for 2 weeks then I go mad when I think it is ok and eat too much and make myself ill again.LOL You would think I would learn! Pasta, meat, eggs and rice are good as are chips and bread and butter. You might be different of course. Also the Cyclophosphamide is given in different ways according to your unit. Some take tablets and only 30 mins treatment so very fasy out of there. My unit doi all 3 iv on day 1 and 8 but I react to C and have to have it diluted in a big bag through a drip over an hour. It is still a fast treatment though. The Methotrexate is tiny weeny and bright yellow. Nettie hope the tongue eases and good luck for the next dose. Don’t think about it until the night before, this is good time to enjoy. Jackie there are at least 2 levels of more effective heartburn/acid treatment than ranitidine although i like it myself, so mention it. When mine was really bad they told me to take 2 omeprazole a day for 2 weeks as they thought my stomach was inflammed from acid. It turned out to be thrush in the stomach and Difflucan killed it but I still get acid right through the weeks. I have to sleep propped up in bed or I am bad at night.
Lots of luck this week and try to keep smiling if you can
Lily x
Hi Lily
Same here - reading the posts on this site has helped me so much (and scared me too mind!) - but have found a huge number of answers to my questions. Glad your last visit was ok - hope you’re not feeling too rough now. Interesting what you say about diet - after my first epi I had to make myself eat, now there’s a bit of a honeymoon period where I’m hungry all the time - looking forward to the chip butties on cmf!!! Hair fell out today - 2 weeks exactly after first epi - but at least I was prepared. Just need the sun to come back to make me feel better!
Jackie - hope you cleared the ironing pile with minimal heartburn
xx
Hi,
Jackie so sory to hear your hair went today and hope you are ok. I found this one of the hardest parts to deal with myself, so used the cold cap. I presume you mean you had a really big loss and have quite a bit left still?
Thinking of you and hoping for some sunshine tomorrow for you
Lily x
Hi
Yes - it just came out in handfuls - I was upset yesterday when it started but ok today. I had my hair cut short as I was told it would def fall out on epi - and didn’t use the cold cap even tho it was offered. Fingers crossed for the sun
Carol (!) x
Hi everyone,
I’ve not been on for a while and it’s just taken me half an hour to catch up on the latest posts! Been recovering from 2nd cycle of CMF - 2 more cycles (4 more chemos) to go - so am now three quarters through whole chemo treatment. Lily my main side effects from CMF are feeling jittery and a poorly tum for 3/4 days - feels like I have constipation but have loose acidic motions. I’ve been much more tired after this second cycle too - stayed in bed for 2 days! I had a really cold body temp after every Epi - was wearing North Face base layer under clothes, even when it was sunny in August!
Sorry to hear your hair has all gone now Carol … but just think, no washing and drying it for a few months - just a quick splash and dry 
Mine is now growing back with avengence.
Lily I’m on normal ‘huge’ syringes full of CMF, not tablets, but they give it really fast now because the Hickman line goes into the top of my heart so they can put the saline drip on fastest speed. It does zap my head a bit as they do it, and the bottom tickle I used to get from the steroid injection now feels like someone is pressing needles in - but it only lasts for seconds so is very bearable. I guess I’m lucky not to have any allergic reactions like you.
Mivvie - I’m gutted about putting on weight on chemo too - thought I would lose some. I’ve tried hard not to overeat as I know how difficult it is to lose … but I reckon, like Lily, that ‘good’ food really does seem to stop the side effects being so bad. I found on Epi I was constantly hungry, so I ‘allowed’ myself to eat a small amount every three hours, sometimes even through the night - tubs of rice pudding are useful.
Hope you are all ok today? Epi really is the worst … especially those days when you feel like you can’t carry on with it … but it does end, and CMF is much more bearable.
Best wishes, Shelagh x
hi all, hope everyone is coping with their treatments, I’m feeling good atm although i have a man with manflu… he’s being really good though and keeping away from me.
sorry about your hair carol, We know its going to happen but it must still be quite a shock when it does *hugs*
love Nettie xx
Hi everyone
Enjoy the weekend!!
xxx
Hi,
well done Shelagh for getting to number 6 and you can look forward to a very happy feeling when you get to the next if you are like me. I can’t believe I can see the finish line. I never thought I would get to number 6 after epi, but as you say it is so very different, although I hate going the second week. November 18 is the final day. I am cold on CMF but was hot on epi but then it was the summer. How is your hair mine is growing fast now and sticking up in tufts all over like a dinosaur! Nettie keep away from those bugs if you can, I hope you don’t catch it too.Good luck and also for Carol for next week, I found epi 2 better so I hope you do too. At least you know what to expect, which makes it a little easier when you know after ? days it will be gone again. CMF is not so predictable for me. Mivvi how are you getting on, on that fast route? Hope the jabs are ok and no reaction.
Take care
Lily x
Hi
Thanks Lily - shaved the head today - cried, had a large glass of (medicinal) wine, then threw half away & made a chocolate cake. So pleased my scalp isn’t hurting so much now. Hope I find epi 2 better too… just hope my bloods will be ok and I can get on with the treatment. Never though I’d say that. CMF sounds interesting - & unpredictable - but as you say, with each one yo’re closer to the finish line
xx
Hi
Typical isn’t it, feel so much better on epi 3 than I did on 2 but now got nasty cold and cough. Drs put me on antibiotics so hope I don’t get any side effects from them. I can’t believe how fast these last few weeks have gone. It’s back for bloods again on Friday and then final epi next Monday all being well. Then back into the unknown with 4 cmf, anyway the sooner they are over the sooner we can get back to normality.
Nettie watch out for the man flu, I thought I’d managed to avoid it but it still got me even though we spent over a week avoiding each other.
Carol hope you are now coming to terms with the hair. I’ve found that it doesn’t bother me at all except when I have to go out somewhere new. At home I just go commando and hope that I don’t scare too many people when they come to visit. I told the receptionist at the hospital that I might go without the wig on Friday as I look a good candidate for Halloween, gave her a smile.
Lily just read on one of your other threads that you’re suffering with hives, I hope they’ve now calmed down a little as there is nothing worse than than that itchy feeling.
Love Jackie xx
Hi
Thanks for the hugs and nice comments - it’s great knowing you all understand. Much better today - just getting on with it. Jackie sorry to hear you’ve not been feeling good - hope the antibiotics do the trick. Is it a cumulative effect on lowered resistance too - or on the whole do you recover between each epi? Still trying to get the hang of this!!! Great idea about halloween - may try the same (tho prob not brave enough yet!!).
xx
Hi Carol
I’m on the accelerated epi which means chemo every two weeks and so far on the 1st dose I was only down for about two days and on the 2nd it was a little longer, three or four days. This time apart from the cold and cough I have only felt low for a couple of days again. No other noticeable se’s, the drugs seem to be working thank goodness. It is definitely do-able especially when you think of all the good the chemo is doing for us.
Jackie xx