I have had my information session - and I have the wig voucher, going on Friday and then hair cut, I thought?
Anyone got any advice for this one? I have read the Top Tips and will be going with my ice lollies and drinking as much as I can.
One problem I know I will have is vein access. My left hand is now getting fed up of providing veins for bloods and etc. So anyone had the PICC line in the arm?
I would love to hear from anyone who is doing this one. How long does the red wee last?
When will the hair go and how quickly?
yours in terror.
hi gill it is scary when you first go iv had 2 epis now the red wee does not last long i am having a line put in because my veins are no good i really cant give you much advice but there are some great people on this forum who will give you the advice you need i would like to say good luck take care luv sue xxx
I start my epis next wednesday but have been told i have good viens, just hope they stay that way.
All the best
Bridie
thought I’d just say Hi and come along for the ride?
I start epis next friday i think. Somehow don’t feel too worried, I know it’ll be rough…so what’s to worry about?..
suspect I will feel very differently come next Wednesday!
Getting wig this Friday and have had my hair cut short a few weeks ago to make washing it easier after op anyway. Hate it sooooooooooo much I ma almost looking forward to it falling out.
Love to all
Gillian
Thanks everyone. - we call it Epis, do we? ok I had trouble with the long word anyway. I liked the rubi bit related to the red wee, I told my huband ite red was from the rubies they use - it took 2 seconds for him to realise I was joking!
Bridie - if I am good on tuesday i’ll let you know how I feel - see if you go the same.
Sue - how do you feel in the days after. they are giving me anti sickness and steroids - do you have that? Have you still got hair?
Gillian - I am not looking forward to short hair as it took me ages to get it how I like it, but thought that it would it would be easier when it falls out if it is short. I expect I will feel like you.
I decided against the Cold helmet thing - what are you all doing?
I am also going to have Zometa - for bones.
Gill
Hi,
it depends how much you drink to how soon the red wee goes. Epi irritates the bladder and I really would encourage you to force yourself to drink fluids as some people get cystitis and thats just another thing to put up with. I find it easier to drink loads while in there before the drugs get working on my tummy and nearly alwyas go to the loo twice while in there. The red is instant from when they put it in. I get mine through the same night usually but my pal who struggles to drink has hers for 2 days. I think it just gives you something positive to focus on and to feel like you are helping in some way. It is the only bit you get to control! If you don’t wear the cold cap, the most common timing is for your hair to go from 2 - 3 weeks after the first epi, but there are variations. Epi eats hair everywhere and usually starts with a brazilian!
I have just had my mad weekend after epi number 3, it gets me on days 4-8 roughly and then I just wake up and it has vanished. Its not the same as 2 weeks in Dubai but you guys can do this. I take all the drugs they offer and have not been even nearly sick on epi, just terribly delicate and like a slug on the sofa.
Hugs to you and hoping for a smooth first go. The very best bit is coming out knowing you have got one done and dusted.
Hugs
Lily x
Hi Gill, please do not worry about the PICC line it makes the treatment so easy and straight forward. I feel very lucky to have been given one from the beginning even though I was anxcious. It’s postioned in the middle of your upper arm and the nurses tape it all flat so it is not in the way . I do not even notice its there only when dressing. You just need to be careful not to get it wet and it will need redressing and flushing each week either by district nurses or the chemo nurses.
I’m sure most people who have the canuals will tell you what a problem it can be to find a vein which is distressing and painful and I have heard that the epi can cause longer term discomfort with the veins which you will be spared.
Good luck with the hair cut and let me know if you have any other worries about the line
Lynda x
Hey Gill you can tell everyone you’ll be on E for 6 months 
No seriously am on FEC in which the E is Epi and my scalp got sensitive about 14 days after 1st dose. and fell preety quickly between days 14 and 20. on day 21 is next dose mote of the hair had gone and I was left with a nice even short curl baby hair it feels soft and nice now and a local friend who caught me re=arranging the buff said I rahter suited the skinhead look. Some of us do it seems 
Siome find joy with the cold cap. I like buff headwaer and I fon;t like hospitals and don’t need to try and look like nothings happeneing so don’t want a wi personally but the cap does work for some. are you going for it?
Hi Gill: I started epi on 27 May and had third one Tuesday this week. I have been v lucky with virtually no side effects apart from the hair and bit of sore throat. Hair mostly went at end of first treatment but got two great wigs both Raquel Welch jobbies, one from NHS, one in sale on American website. Hairdresser has done them to look like my own hair - don’t think I will ever go back to real hair!! Get the best possible wigs you can find - if you decide to go that route - the US site is called Headcovers.
I took my drugs religiously only making sure I took the last ones by 3/4pm latest so that I had good night’s sleep - the steroids keep you awake. I always drink gallons of water anyway so pink pee goes by end of epi day.
I have had problem with sore veins from epi2, and this time had epi in surgery arm as my Onc Prof says OK. New nurse did treatment in different order - epi first and then steroids as she says the steriods wash the epi out of the vein and relaxes the vein so it doesn’t go hard - acts as anti-inflammatory. Going to ask Onc Prof at meeting on 21 July why they don’t all do it in that order if it saves you pain.
What are you getting after the Epi? Are you on the CMF route? I start that in about three weeks, if that is you will keep you posted.
It is difficult sometimes to keep your mind in the set that they wouldn’t be doing this if it wasn’t in my best interests. That is what I have the most trouble with. Some of side efects from future treatments - Rads, Herceptin, Tamoxifen - can be horrible and I get to the point where I think I don’t want to put up with that but then have to think about the alternative. Another point for the Onc meeting.
We all say that laughter helps, find the thread with the Top Tips and the One Liners, some are hysterical.
Take care and we will all be thinking about you.
Julia
XXX
they dont offer cold cap at bolton. already sorted a wig, but will probabley go bandana and hats.
love
B
Thanks all for your replies.
Lynda - I needed that abou the PICC line - maybe I 'll go for that from the start -?
I don’t know whta will happen after th first dose - cos then they will have the histologies and may change if I am HER2 + to Taxol and Herceptin.
Not going to do the Cold - helmet - I spoke to a BCC Volunteer how gave me a frank low down about it and I decided not to - other reasons too ie keep it as simple as possible.
Julia - I don’t know what CMF is. I had Radio therapy 9 years ago and it is not so bad - tiring and you must use E45 cream in bucket loads - before you get sore. Tamoxifen was ok for me too, a few flushes - nothing to what is to come for me. It is funny how we do things in different orders.
I’ll let you know how I get on - look forward to hearing from you all.
gill
Hi Gill
Ive just had my 3rd epi yesterday and although i normal have no problems with my veins this has shot them to pieces took them 2 hours too give me my dose which is bad, i have phlibitis now which is painful . getting line in next week as i cant take any more needles which normally dont bother me.I hope this doesnt scare you as everyone is different
Best of luck
Joanne
Joanne
Thank you for telling us that. No really, I think the PICC line seems to be the thing to have. I thought into veins was less scary than the line, now I think I will go with the flow - that is normally the best way.
Being experienced at this now - how well are you today? do you work/function normally - when?
gill
Gill23 - just wanted to say if there’s a chance of you switching to taxol - I would try the coldcap. I know it adds a bit of time to the chemo process (and can give you a great ice cream headache) but your are likely to keep your hair. Of course if you have made your mind up no worries but I have found the coldcap OK and have kept my hair (apart from a bit of thinning) on tax.
Whatever you choose good luck on Monday.
Geraldine
Geraldine - thanks. final decision will be monday - but I think I am decided. I don’t know what I will end up on and I think I am not up to any more that the necessary.
gill
hi gill
I went on the sick day before my op but was hoping to go back to work during chemo but as iam a delivery driver which is quite a heavy and demanding job I cant as some days i dont have the energy so looks like iam off for the duration. If you go on Epi its not too bad and have advice if you need it. You will certainly lose you hair which is upsetting to say the least I had log waist length blond hair which was my pride and joy and i brole my heart when it went. But i wanted to give the chemo 100% chance of working. Cold cap only delays the inevitable with Epi. I now am proud to go bald although sometimes i wear my wig which is exactly like my own hair was which confuses folk a bit to say the least. well if you want to know anything else just ask away.
Joanne
Thanks Joanne.
I am a Dental Nurse and so have had to say I will not be reliably at work while doing Chemo. Hope to work some times - more for the sanity, but the money would be nice too. I don’t know how that affects benefits, haven’t looked at all that yet.
Got the wig today - looks good - and another scarf!
I’ll let you know how I get on.
anything else you think I should know please drop a line.
Gill
Hi Gill etc
wish i was a dental nurse! That is my main worry about this stuff…I know my teeth are rubbish and think it may cause problems down the line. But cannot afford to get them sorted properly!
Hey Ho, I have decided to get the flat spick and span before the chemo (18th) so I have booked a steam cleaning firm to come and blasp the place and come and clean every week till i am done. Figure if I am at home, I will be too ill to clean and if I am OK, then I will need to work as hard as i can, so someone else can do the cleaning! Any excuse eh? (self-employed with small soft-furnishings business)
Going to get my syrup tommorrow as back-up, hope to have the cojones to go naked!
have stocked up on peppermint tea, ginger biscuits, pineapple pieces, water and all bran…yuk. Would rather eat dust, but there you go!
Good luck next week love
Gill
The cleaning thing is a good idea.
I have done the shopping too - I like branflakes! I bought some lovely ginger wine from Holland and Barrett and some ginger pieces.
Get some floss picks - easier than floss and some Corsodyl Daily mouth wash - it is on offer in Tesco at the moment.
See if you can get a Scale and Polish before you start, so at least your gums will be ok. (NHS 16.20)
Just had a my hair cut - looks good - for 2 weeks!
Let’s see how we go. xx
just had my hair cut too. bought ginger cordial from asda great with fizzy mineral water or tonic if you like it.