Hiya
As for craving cheeseburgers I craved anything salty Ie cheese crisps bacon so think it must be the steriods that do it.
Joanne
Hi all
Just butting in, hope no one minds too much. I am on day 8 of 1st Epi and I had to stop taking the steriods after day 2. I became manic, was like a woman possessed in the supermarket, my poor daughter trying to keep up. By day 5 was feeling more like myself again. I do now however have a spotless house from head to toe. I am eating anything and everything going and never feeling full up, its costing a fortune in shopping! On the plus side, my plastic surgeon told me I need to put weight on so I’m eating for England!
Hope everyone is feeling well considering
Love Catherine x
I’m going out to get a kep fit DVD this weekend, I am pretty big to start with and have put on a good bit of weight already! Having a blady head don’t help either, makes the body look bigger I think.
Gillian (off to have breafast No 2)
my steroids are for 3 days, but I think I will take less this time. I am told to take 2 in the morning and one at lunch time so none in the evening so I sleep, but I think 2 per day will be enough - I 'll see won’t I? Hope I don’t regret it :-/
I have lost 2lbs, so not much to report considering I am not eating anything like what i used to eat - mind I am doing nothing too!
I had a BAD lunch, just cos I fancied, which is very rare at the moment.
hope the sun keeps shining.
gill 
I’m so glad I’m not the only one eating for england. It’s now day 11 of 2nd epi and still raiding the cupboards. I also thought it was the steroids but finished those last Monday so have come to the conclusion I’m turning into a greedy bristle head! I will seriously have to think about doing some sort of exercise, I have no excuse with a gym ball, bike and enough DVDs to open a shop. I seem to have lost any get up and go apart from shopping in Sainsburys and now I will have to go and buy some scales to shock me into eating sensibly.
Hope you are all feeling abit better - by the way I didn’t have the cheeseburger - how could I after 12 years of being a veggie!
Take care
Debbie
Needless to say, I didn’t have the energy to get that keep fit DVD!
Soooooooooo tired but still soooooooooooooo hungry, going to be sooooooooooo big!
Love to all
Gillian
hi,im a bit confused,been offered 4 epi then4 cmf and was offered a tact2 trial but they said that a computer choses which part of the trial you get so may end up getting the same as was originally offered,this will all be kicking off next week going for ecg tomorrow morning and had bloods done today its all a bit much to think about!Im so trying to be positive but feel that sometimes its not possible,they said I only needed chemo as a prevention as surgery was success .
Hi weezer!
You have been offered the same as I am on but I don’t think they are doing the trial in Scotland? So it seems as tho you will get the same treatment but maybe faster or slower? I get an injection every 3 weeks but I think the Tac2 is speeded up.
Do try and stay positive, it’s really not that bad…but it’s the best excuse I’ve ever had to moan…
It’s one ell of a roller coaster ride and it does feel as tho you have to hand over control of your life to the “system” but in a way once you start the chemo, you have a chance to sit back and think about things more.
It’s all the waiting for test results etc at the beginning that seems so confusing.
Best of luck with whatever you get love!
Take care and let us know
Gillian
Hi all
Iam in scotland and have been on tact2 since may
Joanne
Was on same treatment and wish all of you going through it very best wishes. Although at times it isn’t pleasant, it wasn’t something that you couldn’t handle. My worst side effect was a nasty taste in my mouth which made me unable to eat chocolate (lord knows i tried!!) and constipation. After trying fruit, sennakot etc i bimbled to the doctors
and rested my head on his table.(boy was I feeling ill!) and begged for some Movicol. Hey presto I soon had a huge box of the stuff. It was brilliant.
love
Beth x
Hi Weezer
I’m on the Tact 2 trial - arm 4.
You’re right - it’s allocated by computer. Arm 4 is accelerated Epi (every 2 weeks) followed by Xeloda. The accelerated programme has its ups and downs. Up - it goes very quickly. I’m now getting over my 3rd Epi and looking forward to the last. The down - you don’t have a ‘good’ week. If you asked me a few days ago if it was a good idea I would have said ‘no’. I felt awful. But now - next week I’ll be finished with Epi and looking forward to the Xeloda tablets.
As everyone says - it’s do-able. I’m glad to be getting it over with as soon as possible & getting my life back to normal (whatever that means).
Good luck
Mal
I hope you don’t mind me butting in.I’m on TACT 2 trial(Scotland).Accelerated EPI-CMF. The EPi wasn’t too bad.Apart from tiredness and a bit of nausea I sailed through that part.A bit like pregnancy sickness really.The CMF has been very different.Day 1 was dead easy,but I was sick for 10days after the 2nd dose on Day 8.I’m convinced that the steroids and other drugs are what cause the sickness as I never ever take medication unless I have to and sailed through 4 pregnancies and labour without any help.
Hair seems to start growing(slowly)when EPI is finished. I intend to ask whether stopping the drugs will make adifference when I go the hospital on Tuesday for the next round.I’ll update you all when Imget back.
Take care of yourselves and rest when you feel like it!
Tricia
hi tricia
Iam on epi-cmf normal and i find that its the steroids that give me the problems i stopped tsaking them after first epi and had not side effects. But iam on cmf and they give you steriod injection with you cmf and i think this is what is causing the problem. Constipation cronic bloating and painful stomach as if its full of ulcers everything seems to lie there and not move do you have similar problem would be interested to find out
Joanne
Hi,
I am on TACT2 as well and got arm one. Can I say that there are benefits to being on a trial, like I do not have to pay for my prescriptions, which would have mounted to 26 times their cost by now, over £180 !! Check out your area though as not all charge and you can reduce the cost by paying £28 for 3 months. The best part is getting your own reserach nurse to talk to and give you lots of tlc and you get more follow up checks for years after the treatment. Morally you are helping the next generation so if you have any little girls it is for them. Big down side if you get the arm Joanne and I are on it is 28 weeks and some standard treatments like FEC are only 18, check out yours.
Joanne and weetricia I am puzzled that you survived the rotten epi so well and have been trashed by CMFwhich is not known as a strong sick treatment. What are they doing to you in Scotland? I am the complete opposite way round. You are exctly describing how I have been for the last 4 doses and I don’t think it is the steroids for me anyway. The anti sickness drugs give you the worst constipation and that affects your stomach and gives you the acid, reflux, etc but if you are getting nausea and sickness you need them. You might need something stronger. On epi I have had to take anti sickness, stool softeners, reflux tablets, steroid paste for my mouth, nystatin for mouth thrush, tablets for whole body thrush, mouthwash 5 times daily, senokot to go, suppositories and anti pile numbing stuff on a regular basis for 2 weeks some doses!! I now feel like you did and feel so sorry for you but you have to get on top of the symptoms to win. Half a senokot at night is tiny, natural and will sort you out next day. If you can regularise it more, the stomach settles too. Or eat rhubarb or prunes. Sickness need more or new drugs, they have loads more to offer, you get the cheap ones first.
Lots of luck everyone, keep battling,
Lily x
hi,
thanks guys im in scotland and I think I will decide to go on the trial Im sure we get our stuff for free too im desparate to get it all started but obviousley very worried as well,im a scaredy cat.x
louise
Aren’t we all having different experiences with the same thing! I was offered TACT2 before I started in July but as I was on Letrozole for 8 weeks the research nurse then found out I didn’t qualify. As it turns out, the “normal” treatment here is the same as arm 1 so basically I’m on it anyway as the computer may have chosen that for me.
Louise, don’t worry about being a scaredy cat, everyone is worried about the first treatment, it is the fear of the unknown. Like a wimp I had to have a tranquiliser before my first epi but now OK - 3rd epi next Friday. Although I’m a bit concerned now regarding Tricia’s comments about CMF!
Lily - it sounds like you are really going through it. I also get constipated and use senna and lactulose (and figs) which seems to work and my Onco gave me Lansoprazole for the acid. The bloating is awful and I found after the 2nd epi I couldn’t stop eating - catch 22! I have put on half a stone so I’ll definitely have to do some workouts. I found the best thing for sore/ulcer mouth is Difflam. It is expensive £7.00 but my day unit gave it to me for free, I only have to ask and they give me what I need. I hate the horrible taste in mouth and find pineapple helps, along with Magnums, no wonder I’ve put on weight!
Gillian - let me know when you start the DVD and it will give me the incentive to get going. I don’t know if I’m seeing things but I’m sure my hair is starting to grow on top. It’s soft, fluffy and blonde - things are on the up!.
Take care everyone
Debbie
Hi
how are you all? Weezer I would say scared goes with the territory too but keep a diary of your side effects and then you can really plan for the next ones and feel more under control by knowing which days not to plan anything and which to go and have a great time. Chemo changes your take on life incredibly and it does not take much to give me a good day compared to before BC.
Debbie you will just have to wait and see but CMF is known as much easier and I am so happy on it compare dto epi, I could even consider going back to work if my eyes were not playing up on it, just can’t focus far enough to drive. I get Difflam free but went beyond that point several times with a severe mouth problem. I am now on my 3rd type of indigestion/reflux tablets, which cost over £10 each so had to have it formally agreed. Apparently the omeprazole I have just given up on are £7 each!! I have a nice slope down the front of what might have nb=been called a tummy once, landslide now!! Leave it till afterwards you need to nurture right now
Lily x
Hi Lily
Yes you are right about leaving it till afterwards. I’ve spent the last couple of days looking at my fat tum but have no inclination to do anything about it, I’ve decided to begin a fitness regime when chemo has finished. I also want to go back to work, maybe for just a few days a week, as I really miss the involement and I have a fab job that I enjoy. But I will probably wait until I start CMF to see how I feel and the potential side effects, don’t want to be falling asleep on the train!
With all this time at home I sometimes feel I should be doing something worthwhile. When I have “good” days I forget I’m actually on sick leave.
Gillian, Louise, Catherine, Gill, Mal, Joanne & Tricia - hope you are all keeping well.
Debbie
x
Hi Girls
So glad you all seem to be doing OK. I’m really looking forward to having my final Epi this Friday (crazy as it sounds) and am hoping that the Xeloda tablets are a lot easier.
I’m amazed when you all talk of putting on weight. I’ve actually lost weight. My appetite is practically nil because of the foul taste in my mouth for 12 days out of 14, ulcers, thrush etc. I’m not complaining though as I needed to lose a little weight.It’s a complete waste of money though going out for a meal.
Have been back in work a few mornings and I must say it’s been great although I can only manage 3 to 4 hours before I hit a brick wall and have to go home to bed. My employer has been brilliant, allowing me to go in as and when I’m able and to work from home. It’s so good to feel ‘normal’.
Good luck to those having chemo this week (Debbie & Tricia and anyone else I’ve missed).
Take care
Mal
Hi,
Hope everyone is well. A little note for the TACT2ers who wondered about CMF. I have completed the first dose and it has been a dream compared to epi. I have no tiredness, actually I have insomnia and can’t stop wanting to go and do things. My eyes are the worst side effect, but no nausea in fact I gave up on the prescribed anti sick tablets early, my research nurse said a lot don’t use them at all. I am not quite that brave so will reduce by one each time but have some in reserve. It is very hard to stop once it has started so best to be cautious I think.
Good luck
Lily x