Hi,
glad to hear you are all getting on ok, but sorry to hear about the colds. Have you asked about the flu jab, I was told to get it at the end of a cycle but have not been yet. I have hives/urticaria virtually everywhere and it is driving me mad itching. I had it last night and it is back again tonight. Grrrrrrr. Will have to report in to my research nurse in the morning and will see if I have to go in. I nearly always get called in just in case, had loads of little blips. They always want to check my blood which is always high and then I get sent home. I forgot a whole day of steroids so not sure if that caused it but I am having a reaction to something.
Take care
Lily
Hi everyone,
Good to read all your experiences, lily you seem to be having a particularly bad time, what are hives? can you catch them? Hopefully the doctors will give you some medication to sort you out soon.
I’ve had my 2nd epi today, no problems with veins etc. Hair started to fall out yesterday day 13, have been calculating with jackie and carol to see how long i might have before i need to shave, hopefully will last until wed when my friend comes back from hol. bought champagne now for champagne and shave party for a few close friends who have supported me through all this with txts, phone calls etc…
My son has clippers so he is going to do the deed, hes going to canada for the ski season end of november, working over there until april next year, so when he gets back hopefully hair will be back. (wont be able to visit him out there as originally planned, have to keep in touch by skype)
Can already taste that taste coming back in my mouth 6 hrs after epi, very dry. Bought some calippos after reading tips from you, my sons have been warned off! They’re all mine!
Hope your colds etc clear up soon, take care x x x
Hi all,
Just beginning to surface after CMF last Tuesday. I did escape for a curry with workmates on Friday evening 
… but had to rest all day Saturday to make up for it 
Lily it is a really good feeling to be closer to the end; my last CMF is due on 16th Dec which isn’t far away now - yea! I can’t imagine having Epi every two weeks Jackie. I found it affected me really badly for at least 10 days each time, so would have only had a couple of days of near normality before the next one … ugg it must be awful for you. Sorry to hear the hair stories. My hair is growing back fast now. It’s sticking up around my 5 crowns already, so I reckon the wig will be needed for a while yet. My tip of the moment is Roses Lime Cordial with lots of ice - seems to soothe the chemo thirst really well.
Hope you’ve all managed to avoid the lurgies and that your hives has settled now Lily.
Shelagh xx
Hi all
Lily - hope they managed to give you something for the hives - they’re not nice… good luck with that one. You sound as though you’ve had a rough time - let’s hope it starts getting better soon.
Mivvi - what a great excuse for drinking champagne!! Skype is so good - our eldest (of 3) son lives in Oz so it’s such a good (cheap) way of keeping in touch. Shame you won’t be able to visit your son while he does a season . How old is he? (hope he’s stayed away from the calippos - must buy some now that you’ve reminded me about THAT taste!!)
Shelagh - glad you managed a curry - does your taste change on CMF too? Lucky you having the end in sight…
Keep smiling ladies
xx
Hi everyone,
Mivi hives are also called urticaria or nettle rash, sort of big blobs of fluid like from nettle but huge. No you can’t catch them, they are an allergic reaction to something. Well done for getting number 2 done and hope you are a little better this time. Hope the shave party goes well but watch the alcohol that close to epi, take it easy and you will be fine. That sounds like a great experience for you son, but sure you will miss him. I am fine, just waiting for the stomach troubles to settle, it takes a bit longer every time. Shelagh, you sound like me, oh to hell with it I am going to eat that, and then payback later !! Done that more times than I like to remember. The worst was eating cucumber from a chinese take away and violent trots hitting 20 minutes later and all night. Apparently salads eaten out can be very dangerous as man handled rather than cooked. I have never eaten cucumber from there since but fine on the cooked dishes. Well done and cograts for getting so much nearer. I bet you will be really excited like me after number 7 no matter what it throws at you and brilliant to finish before Christmas and a little recovery time before it too. You better get the shopping done early and then rest up. Glad to hear your hair is on its way back, it just suddenly rushes in doesn’t it? Mine has a mind of its own and shows no sign of growing in any sensible pattern and no parting! Carol I am with you thinking about calippos, yum.
I declined an invitation to see a doc todaym, as nothing to see anyway now. They are puzzled as reactions tend to stay and not disappear, so they wonder if it is heat related. This fits in with my temperature roaring up and down too. Then I mentioned forgetting my steroids and they would have been the medicine to cure it! So now wondering whether I would have had this every time on CMF. I have to have piriton iv on the day and have the cyclophosphamide diluted and given via a drip over the maximum time of an hour and it still bothers me a bit. So back to being good and taking the tablets, hope I remember. I got caught out this time when someone (no-one has owned up yet) moved my pill boxes. My memory is such that unless it is written down or infront of me, I can’t always remember it. Good old 5FU brain destroyer to thank for that. It is the one that was in the paper a while ago for causing chemo brain. It got me!
take care
Lily x
hi ladies, Iv not been on for a few weeks but found this thread again(not learnt how to bookmark yet) so am keen to make contact again. I had a great final week before my second epi…got loads done, felt normal, socialised (Abba concert was great wasn’t it ?) and generally forgot about all this stuff. Then back to earth with a bang… Hair loss just before second epi and then a thoroughy rotten time over the last week. I seem to follow a pattern. Both times my days five and six have been unbearable. Iv read elsewhere about the bulldozer effect so maybe that is what i had. Really grim. Even thought my nausea was under control this time with better meds I still felt awful. I’m full of cold today but I know I’m out of it because the cold symptoms feel familiar rather than otherworldly, as the Chemo SEs seem to me. I Also had a bad time giving blood. Bruised all over and a few attempts. It made me very nervous about the treatment but in the end the nurse had little problem getting a vein fortunately. The whole thing gives me the heebie geebies!! I think im very squeamish… and hate feeling like a patient!
On the subject of hair loss i still have a thin covering but its all over the house… I don’t find the look of it so distressing as the process of loosing it and seeing it everywhere. It just seems so scuzzy sickening… Not sure why i’m feeling so bad about it. Iv shed a few tears certainly.
As I said I feel a lot better today despite my cold and i just hope im going in the right direction.
Two more epi’s -how will i cope?
My kids have been away with my brother as it is half term… so missing them too but so glad they are having a nice time.
sorry to post all this but i would welcome some moral support.
Thinking about all of you and thanks for all your helpful and informative posts xxx
Hi Carmel
Glad you enjoyed Abba, it was good wasn’t it? I was like you on epi 2, felt bad from Friday right through to Tuesday but epi 3 has been totally different. I’ve had a bad cold and chesty cough with antibiotics from the Dr but only felt a bit tired and out of it on Saturday and Sunday. So hope your third one goes as well for you. It’s back for bloods tomorrow and then my 4th and final epi on Monday all being well. I just hope the cold doesn’t mean that my wbc is too low. I must remember to ask for the butterfly needle for the bloods that they use for children as they had a terrible time getting any from me last time. They even resorted to using my bad arm.
Jackie xx
Hi ladies
Suffering from 2nd epi - I’ll be back soon - thinking of you all too
xx
hi all
had 2nd epi yesterday, i mentioned the sickness last time, so they gave me more anti-sickness stuff as well as the other stuff. i just have a little numbness in my arms and legs, i must find out if thats normal…
the hair has been shaved back to a number 3, it was thinning out and looking like a bad haircut so out came the clippers, now i can see the little patches where the hair has come out, i hate it but its really good to not have hair everywhere clogging up the hoover, and i am wearing a beanie at all times now
hey we’ve all crossed another one off the calendar, so well done us!
*group hug* love nettie xxx
Hi epi sufferers,
I think you need a cheer up so I will do my best. Epi is one of the 2 big bad boys that kick C up the backside. They are now considered critical for any regime after tons of data and trials. I went close to hell on one of the epis and considered asking to be put down by the vet at one point. Be vigilant with the SE and especially don’t let the quick drying cement seize up your bowels. If you get bad constipation you also get terrible acid, wind, bloat, etc as everything has to come up through your mouth - even wind, lovely!! Act fast and take a laxative. For sickness and nausea get on to the unit as they have tons of more expensive drugs they hide away, so you know you will be better next time at least. Glue yourself to the sofa or bed as much as you can on the worst few days and hand over everything you can. MY totally undomesticated OH soon got into the swing of me not cooking tea or loading the dishwasher but I did have to just wait for this to happen by just leaving everything. I know just how long and tough epi can be but solsiered through the full dose for a better long term prospect. You see your onc when you change drugs and after epi he said, 'well I can tell you, you have already done it. That size dose of epi (on epi/CMF) is enougn to do it alone and from now on th CMF is just pushing your figures higher and higher. It made me really glad I had stuck with it and also was such a great and positive payback for the days of misery and discomfort and hair!!
So keep jogging or struggling down that long path and get ready for the great view at the other end. I never thought I would last the course and vowed to stop after dose 6 but 7 is done and I am going to embrace number 8 the final and no doubt worst one. 178 days on chemo done and 18 to go. it does end.
Big hugs
Lily x
thank you lily, this si just the kind of thing I need to hear, it makes all the crappiness worth going through really big hugs to you
love Nettie xx
What an inspiring post lilly… I hope i can do that for others in the future!!. Its good to think about the positive aspects of the epi regime!!! . I still have stinking cold but def on the mend and looking forward to taking a few walks next week. Good luck with the bloods Jackie, I hope its not too traumatic this time. I hope i follow you in having a better time with number three…On the the tablets for the second half of my trial so thank goodness for that. Sorry that you are in it Carol, its against my nature to just right off a week of my life but that seems to be the only thing to do… sending lots of solidarity… Nettie thanks for group hugs and I am very intrigued about the number 3. I’m very tempted. One of my pals does a roaring trade in clippering her husband and his friends hair so she’d be the one to ask. My only concern is loosing the bits of hair around my ears and forehead that make my hats look more normal. But the relief not to see hair EVERYWHERE would be something… Any thoughts?
sending lots of good vibes to all
xxxxxcarmel
Lily - you’re a star - really needed to read that post tonight. Don’t feel so sick now just can’t stop crying - you reminded me why I’m doing this! Just feel the rest of the world is carrying on without me (for the nth time!). Good advice just to ride it out by vegging. I’m glad I’ve got 3 weeks between each epi - well done any of you doing it 2 weekly (is that one of the trials?!)
Thanks too everyone for the hugs, much needed. Local friends are supportive but somehow just don’t understand quite how it feels - it’s so good to know you’re there for me. Nettie - as you say 2 down only 10 to go including cmf.
I’m happier now my hair has gone - just wearing hats/buffs/and assorted items from headcovers.com - they are brilliant. The wig is itchy so only wear it when I think I need to… the anticipatrion was almost worst, but since I knew it would happen it was ok - ish. Yes Carmel - it’s rapidly going everywhere!
Jackie - hope the bloods were ok - lucky you, you’re nearly to the end of the epi
Hugs to everyone
xx
a little update on the number 3 haircut, the little hairs that come out in my hat feels like little needles in the hat, so i have to keep changing hats, its all coming out really quickly now so it wont be long until theres none there at all. so if you dont want to cut your hair so short, maybe keep your hat on at all times to catch the hair thats coming out, rather than it getting everywhere, cos a number 3 still falls out, just in shorter bits.
*more hugs* hey i have an endless supply!
love Nettie xxx
Hi,
well very glad if I helped in any way, just repaying the many friends on here who have done the same for me. I know how important it is to have people to talk to who really understand, they have seen me through to visit 10 by cheering me along or suffering in sympathy with me. There is just one friend left still having chemo on the same day as me, thanks Julia. I think with the 12 visits it is even more important to have a buddy than on the 6 regimes, as everyone else finishes so much more quickly. The second half has different challenges but I have felt normal again with side effects. Epi made me feel like I was in a bubble for days, which I hated.
Glad to hear you are climbing back out of the dark hole. Buffs and hats are going to be in this year, so great timing for all of us. Big hugs about the hair. I would definitely hang on to whatever you can to stick out of hats, etc. If it all goes you can buy stick on fringes. It does make a difference to how you look, if this is upsetting you.
take care and enjoy the weekend if you can, if not roll on Monday for a better week
Lily x
Hi everyone, great to see so many supportive people, im beginning to love and relate to some of the terms used ‘sofa slug’ is one im goning to keep after this!
2nd epi last mon, (every 2 weeks on trial)with steroids and anti sickness drugs have been ok but a bit hyper waking in the night for a few hours.
Had champagne and shave party on thus night my friend insisted a no 3 would be less traumatic. She was probably right but with all the short hairs coming out they are so difficult to get rid of so the razor is coming out this morning. Went out in the wig for the first time yesterday, quite scary but everyone was getting on with there own lives not noticing me as i was expecting, so wasn’t too bad.
Ive discovered peppermint liquid gaviscon for the heartburt, available in sachets to take out but quite expensive, it does the trick instantly!
Jackie can’t believe you’ve nearly finished the epi,s, well done.
Carmel im sure you will feel better when your sons come back from your brothers, kids seem to have a way of taking your mind off things.
Carol hope things are getting better for you you seem to be having a particular bad time.
Thanks to lily (hope the hives have all gone now) and everyone for all messages. I think i’m coping quite well but reading these when you start to feel low really do help. Great to hear what the onc said about the strong epi drugs, after all that’s why we are doing this!
Thanks sending big hugs to you all, enjoy the weekend. x x x
Hi again, feel really rude coz once you start writing you can’t always get back to check names of people writing, i went back a page and lost all my writng. So i missed saying to netti, my hair is the same as you at the moment, i got some fleece beanies from headcovers, quite good value even with the postage, arrived within the week. Hoover doesnt know whats hit it i really can’t cope with the small hairs (which are my own grey, had convinced myself was still blond really!).
Shelagh, its good to hear the end is in sight for you, counting down really works. Can also relate to the lime cordial, as im hooked on the lime calippos now.
Take care everyone x x x
Hi ladies
Just climbing out of the black hole - how are you all?
xx
Hi,
glad to hear most of you are starting to feel like you are climbing back up out of the hole. Just go out and have a great time in your good weeks, it helps me to be positive and feel that there were actually a lot of nice things happening in my life too. It is easy to let it take over everything you do. Even on a bad week I try to do little things just for me. Easier said than done I know, as my 4 are grown up now, not so easy with littles around. I have been buying a few things for Christmas,and just think how far you will be in your treatment by then. I have a good week now although this last CMF has played havoc with my digestive system for longer than usual. Big hugs about everyone’s hair. I just couldn’t manage no hair and used the cold cap for the 4 epi. It started growing before the 4th epi and is growing steadily through CMF wihtout the cold cap. It is now about 1 1/2 inches all over and a very short pixie cut in badger grey and black. I have bought an organic copper dye from Sainsbury and plan to see a hairdresser very soon. So I should be back in commando short hair before the last CMF. Hope that cheers you. By the way it is thin and fluffy and is totally out of control, not thick and curly as some idiot told me to expect!!! But it is hair and I love it
Enjoy the next week if you can
Lily x
Hi everyone
Bloods were fine on Friday, so I’ve had 4th and final epi this morning. They remembered (with a little persuasion from me) to use the butterfly needle for the bloods and managed to get all the blood they needed first time thank goodness. Chemo went smoothly as well so hope that the se’s are no worse than last time, just a little heartburn and a couple of days of fatigue round day 5 and 6. We enjoyed a good weekend with younger daughter, son-in-law and 2 3/4 yr granddaughter. Didn’t see as much of them as usual as granddaughter had three parties to go to over the weekend. Two Halloween (where she went as a Fire Fairy, with fiery horns and fork, which she decided were tiara and wand as she loves fairies) ones and a birthday party.
Mivvi hope you’ve continued to feel fine on epi2. It won’t be long before you’re joining me at the end of it. Can’t remember are you going on to cmf or xeloda once you’ve finished epi?
Carol sorry you suffered on epi2 as well. At least for me epi3 was a bit of a doddle especially after they sorted out my heartburn remedy.
Nettie you don’t seem to have been on since epi2 hope you’ve not fallen down on this one as well. At least you can take heart that I found epi3 much better.
Lily you are a star. I’ve been following your posts, both on this thread and others since I was diagnosed in August and have taken great comfort in your words of encouragement. Each time a different se appears I think back to what I’ve read on your posts and taken heart that it is doable and will eventually come to an end.
Carmel not heard from you for a while, hope it’s because you are now feeling better and enjoying a few days of enjoying yourself before your next treatment.
Sorry if I’ve forgotten anyone.
Hugs to you all
Jackie xxx