Hi Angela
I read somewhere too that you could have the tablets 8 - 10 hours apart but when I asked at Christies they were adamant that I take them 12 hours apart, they said it depends on the dose and what you’re being treated for!! So I’m a good little girl and do as I’m told. It is a pain though.
Let us know how you go on.
Mal
Hi Mal
Oh well, I guess I would do the same if I were you… I guess I got off lightly then. Day two down… no side effects so far. Have you had a drink since taking the tablets? I have a night out coming up and dont want to make myself really ill.
Hope your still geiing on ok.
Angela
Hi Angela
To be honest I have had a couple of drinks on the week off but that’s all. I did ask the onc when he first put me on xeloda if it was OK to have a glass and he said there was no problem as long as I was sensible. He must think I’m an alcoholic as I was moaning when on epi 'cos I couldn’t even tolerate a glass - was glued to the loo for hours! So don’t worry, enjoy yourself. Just don’t overdo it.
How are the rest of you girls doing. It’s been very quiet on here. Out enjoying yourselves I hope.
Take it easy
Mal x
Hi everyone,
Just been catching up on everyone’s news.
I had my last epi on thurs and though I felt very sick while they were giving it me, I haven’t been too bad since. I was offered a week off cos I was SO knacked from my third epi and I’d had a bad cold too. I’m so proud of myself for just pushing on and getting the last one done.
I’m due to start xeloda on the 13thNov so it’s been very interesting seeing how everyone is coping.
You’ll like this Mal, my cycle works out that I’m due to start my third cycle of xeloda on christmas day…I said to my tact2 nurse that it’d be no fun for me at all…and she agreed, I think they’ll allow me to delay by a couple of days which would suit me fine. slightly worrying that we’re being told different things about the timings of when to take tablets though so I’ll be ready for that when the pharmacist goes through it with me.
Sorry but…yeeeahhhhhh, no more epi!!!
big hugs to you all
Mo
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Well done Mo! Last epi over & done with. It’s a great feeling isn’t it? Just get the next week over with and you can look forward to feeling so much better. Xmas day would not be on at all, glad they’re delaying it for a couple of days. They’re very good aren’t they? So you’ll be able to enjoy Xmas properly with a few drinks. I’ll be interested to see what they tell you with regards to the timings of your tablets. I checked the label on the box and it does say 12 hours apart. I started my 3rd cycle of xeloda today and am feeling good. Took my Mum Xmas shopping and out for a meal. No way I could have done that on epi. They told me on Friday that I should get the appointment for my rads planning thro’ in about a month and then start in the New Year. I can now see a very bright light at the end of the tunnel!!
Take care ladies
Mal x
Hi everyone
Hope you ar Ok Felix and Fiona
Mal and Angela
My box says morning and night but onc said 12 hours. Am going to ask again next week as setting alarm and going back to bed just isn’t the same.
Feel soooo much better on Xeloda against epi am working 4/5 hours most days and most of my blips have gone . Thank goodness. Got omaprozole again from docs so heartburn, indig and cough all gone
Take care all
Liz
Hi Liz
It’s great, isn’t it? Feel almost human again on xeloda!
Hope the rest of you girls are OK.
Mal x
Hi everyone
No more epi horaaaaaaaaaaaaaaaah. I picked up my tablets today and it doesn’t sound bad at all. Fourth epi was awful and i have now started flushing, but because of my age they say my periods should return. They have told me to take the tablets 10 hours apart but it can be 12 if i want?
It will be nice just to get some of my life back
Hope everyone else is ok
Felix x
It’s the best feeling in the world isn’t it Felix, luckily I haven’t been too bad on my fourth, although just at the moment I feel exhausted doing not very much.
I do feel a bit shaky/flaky at the moment because my shoulder is hurting (on mx side) and it makes you wonder …esp in the dark hours.
If it’s still the case when I see my onc next week I’ll mention it to him and see what he thinks.(trying very hard not to dwell on this)
Talking of periods, during my 4th epi I’ve managed to come on…anyone else had a period?
Love to you all
Mo
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Hi Mal
Well its tried and tested, I had a drink on Fri and Sat (2 nights ina row… its becoming a habit) and was fine. Had only been on the tablets for 3 full days. So far I have had no side effects other than being a bit tired. I havent taken any of the “Just in case” prescriptions so alls well at the no.
Liz
I agree, getting up and going back to bed is no fun at all, saying that Im still doing it just to make sure I have the tablets at a decent time otherwise I wont surface untill about 11.30. Outr heating has broken down and I dont want to get out of bed to sit in the cold 
never mind!
Hope you both feeling well.
Angela
Hi Girls
All over the epi now? Yippee!
Glad you’re both doing OK on the xeloda Angela and Liz. Let us know how you get on Felix. I too set the alarm at week-ends and then go back to bed, but weekdays is different when I’m working. Still only working til lunchtime and then go home for a nap but do get in work for 7.30/7.45 am. They’re happy and I’m happy!
Glad you’re surfacing from the chemo fog Mo.
Keep smiling
Mal x
Hello Girls
It is no nice to read all the comments that we have made it through the chemo fog. I am feeling so much better at the mo no side effects yet but still early days. I also had a glass of wine last night and it actually tasted really nice and very enjoyable. Off out tonight aswell so i’m hoping my energy levels will keep up with me.
Everyone have a good weekend
Felix x
Hi everyone
Hope you all had a good weekend mine seemed to fly by. Xeloda going ok feeling quite tired from them, and i seem to be getting thumping headaches in both sides of my head and watery eyes, has anyone else had that side effect?
Still flushing that is driving me insane as it always seems to be more prominent at night when i need to sleep. Saving a fortune on heating bills.
Take care all
Felix
Hi Felix
Had a really good week-end but overdid it a bit and am completely shattered. More energy on xeloda but more tired (if that makes sense).
Headaches - I get them sometimes but it’s usually cured with eating something, even just a biscuit. Not had the watery eyes though. Someone on this forum recommended drops from Boots. I’ll see if I can find out what they were, but mention it next time you go. I’m sure they’ll have a magic med for it.
Otherwise OK?
Hope you other lovely ladies are all OK too.
Mal x
Hello everyone - I’m back from Mars! Betcha thought I’d gone for good it was AGES ago that I last posted something. Been catching up on everyone’s news and its rather comforting that we’ve all been through similar aches and pains.
So Epi out of the way and I am so relieved. Felix - my last was grim too. Had horrendous time with cannula. Blood wouldn’t flow. Tried twice and then plan b - had hand in bucket of hot water for 20 mins and then tried again. 3rd time lucky but boy not cried before. So have been rather twitchy with needles eversince. Was stressed beyond belief when had to go for the blood test. I’ve never been like that. I cannot imagine what it must be like to have the whole 26 weeks with iv chemo on epi cmf arm of the trial. My heart goes out to those girlies.
Bloods were a bit borderline with Haemoglobin,so much so the team said that if it hadn’t gone up I would have had a blood transfusion. I stuffed a steak down me and had bolognaise with beef too. I’ve changed my diet to be more veggie since all this started as read it was better…but not for red blood cells, so was rather reluctant. However, I really did enjoy the steak and chips! HA!
Mal, you are absolutely right about Xeloda, side effects, well, so far that is, are so much easier to deal with - not really had that much. Fatigue has hit me more and felt hacked off that I couldn’t do things as the energy levels have been way too low, but have just had to go with flow.
Felix - glad we’ve got to end of epi huh.
Momathome - I’ve had watery eyes and dripping nose from hell ever since had 2nd epi. I go through loads of hankies every day. I now wake up with eyes nearly crusted together. I’ve been given some eye drops, amongst the rest of the pharmacy they have given me over the weeks to combat any side effects, which help the itchy then the soreness where I’ve been daft enough to rub them! (you know where you tell your children - don’t rub you’ll make it worse well…)
I too have had a couple of glasses of wine and really enjoyed the rose but the white was a bit too acidic for me this time, but hey ho - roll on end of jan - I may be able to cope with alcohol a bit more. Been of it totally,like Mal, but then I’m so much cheaper to take out to dinner.
Re the timings for xeloda - I asked about the 12 hours to the chemo nurses, remembering what you guys had written on here and I said that I could cope with the 10hours diff but 12 was quite hard without dragging myself out of bed at crack of dawn, so they said to just eat a snack later on at 11.5 hours and then take the xeloda half hour later, which is what I have been doing - but I think I’ve gained weight doing this as I’m eating more! Will check again with team when I go again next Monday. Only seen Onc once since I started back on the 8th Sept and then I only saw his registrar as he wasn’t around and this was nec as was changing onto Xeloda. Nearly didn’t start as my finger tips became painful and bright red and were incredibly dry.I couldn’t wash my hands in warm water as it felt like I was burning them and I couldn’t hold a cup or anything for a few days. I thought 'Bl**dy H*ll I’ve not even started the Xeloda and I’ve got that side effect. So we decided to carry on as I had started to moisturise madly and the pain had subsided by the time I saw the onc but she gave me B6 tabs to take. Worked a treat and no signs since. Just having to moisturise frequently. One Bonus - told not to do washing up for a few days., but that’s wained now as hands don’t look like red hot chilies any more.
anyway this will turn into thesis soon so hope you are all well and thanks just for being there and posting your ups and downs, Thanks guys Fiona x
Hi Everyone, I am new to this thread and hope that you don’t mind me joining in…
I start Arm 4 of the Tact 2 trial on Friday 14th Nov. So will have accelerated Epi- Xeloda…, but as I start on a Friday , the have suggested that I will probably have to inject myself with the GCSF on the Saturday !!! Has anyone else had to do this …and how easy will it be…I am terrified by the whole prospect of the Chemo I might add.
Hugs,
Jill
Hi everyone
Welcome to us Jill
Isn’t it great to be off epi
Just like you Fiona my heating packed in for 3 days last week (day I had it serviced too)
Been feelin great just a bit tired but woke up with a cold and sore throat on Friday and was out of action for 4 days ( Doct took urgent blood test to check levels — results still not back day 4 when had blood test taken for chemo today - so much for urgent and good job they weren’t too oow or I may have been in trouble)
Take care all
Liz
Jill, I just wanted to wish you the best of luck with injecting yourself,…I’d have someone on standby to do it for you if poss cos it’s not the nicest of jabs cos it stings.
Take care
Mo
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Hi
It seems everyone is tolerating xeloda OK. Brill isn’t it? Epi is a distant memory now - thank goodness!
Sorry your last epi was so bad Fiona - but it was your LAST! Strange how we get told different stories re the timings of the tablets. It is a pain having to set the alarm at week-ends but hey I go for my last lot next week - yippee and I’ve got my appointment thro’ for the planning session for the rads (25th Nov).
Jill - welcome. Waiting for the first chemo is nerve racking but once you’ve got the first under your belt you’ll know what to expect. Good luck for Friday. Let us know how you go on. The epi flies by and you’ll be talking about starting xeloda in next to no time. Injections - I too had epi on Fridays but the district nurse came round the day after to do the injections. The hospital gave me an authorisation card and I just phoned the nurses on Saturday mornings. I couldn’t have done it myself. Ask at the hospital.
Take care ladies
Mal x
Liz -heating?? Mine hasn’t broken down - hope yours is okay now though!
Hi Jill, welcome to the forum. There’s actually 3 threads with girls on Tact 2 trial on going and I think we all dip in and out of all of them. Trying to remember everyones names and comments can be challenge but Mal seems to have superbrain and remembers times who has what when; due etc. Love her!
As the girls have said,waiting for that first chemo is so stressful as its unchartered waters and you just don’t know what to expect. Then you are waiting for the side effects to hit you like a bolt of lightning but it doesn’t happen like that. In my case they came on very slowly and really became apparent after 2nd/3rd Epi. My hair was the first but only after 2nd epi and then it hasn’t all gone. I wouldn’t go outside as I still look like Golam out of lords of the rings and would have scared the children on Halloween!
Do you have a friend who is a nurse who could help you with the GCSF. I think your hospital are asking a bit much for you to do it yourself the first time. I considered it once they had administered the first one, but just popped into the clinic when I needed it doing. Couldn’t one of the nurses in the hospital help you or the docs surgery ? Let us know how things went. My thoughts are with you, and all of us will help you through this (I’m sure the others will agree).
You can laugh, moan, get angry, we’ve all been there!
Fiona x