Hi Ladies
I am due to have my first chemo on Thurs. I am on the TACT2 trial arm 4 which is accelerated chemo and one of the drugs is the oral Capacetabine.
I know we are respond differently to these drugs but I am trying to see if anyone can tell me roughly what side effects they had whilst on the oral capacetabine.
Hubby and I are planning some events we have planned and need to book up 3mnths in advance for one in particular. Bless him I tried to explain that even without BC none of us knows how we are going to feel in June/July but it would really help to get an idea on perhaps what to expect.
Thank you all
A very nervous but sort of pleased to be getting on with it…Paula
x
Hi Paula,
I was on the tact2 trial also arm 4 and finished chemo in january, I found the Xeloda a much easier chemo to do, as its a oral chemo it saves problems with the veins too. I didnt have any side effects at all apart from some heartburn and tiredness .I was on 4x 500 tabs twice a day , its best to take the tabs within half an hour of eating as this stops any nausea feelings , i never felt sick or ever needed any anti sickness meds.I know some people suffer from hand and foot syndrome with the Capacetabine and it helps if you keep moistureising (i just used E45 cream and never suffered with the hand /foot thing at all,) I too was a bit worried about starting a different kind of chemo but honestly i found it a walk in the park compared to the Epi , and could carry on with my normal activities mostly,.and the good news is your hair will start to grow back too, i know everyone is different but on the whole i think youll find that most people find Capacetabine a much easier chemo to do.
Hope this helps a bit
Good luck
Lindiloo x
Hi Paula
What a brill question.
I was wondering whether to post this one as I wanted to know whether taking daily chemo for 14 days would cause problems…
One thing with the Epi is you know when you have had it it is all on the day and things get progressively better over time toward the next dose.
I would also like to know how long people on leg 4 of the trial held on to their hair.
Thanks ladies
Sarah
Hi Sarah and Lindiloo
Thanks for that info Lindiloo.
Sarah…yes I am doing a bit of forward thinking on this one !!!
Cheers
P x
Hi Ladies. i will be joining you on arm 4 of tact2 trial soon so read with interest this thread.
Rachy x
Hi, Sarah,
My hair started to fall out about day 14 after my first epi , and quite soon it was comeing out in handfulls , i decided to get my hairdresser to take the rest off as i was fed up of finding hair everywhere , the following week it had all but gone ,it was a bit upsetting at the time ,but you soon get used to it, as soon as i started the Xeloda it quite quickly began to grow back, i now have about 2 inchs of hair and its very straight (i have always been naturaly curly before) but dont mind at all as hopefully i can bin the straightners lol
All the best to all of you about to start Tact2
Take Care
Lindiloo x
Hi Lindyloo
It is good to know that the hair grows back after the Epi has ended. I hope I get your curls!!
Did you suffer much with side effects from the Epi? I have just had my second and have found that it is generally not too bad, horrid taste in mouth, heartburn and the odd steroid flush.
It’s good to have someone who has done the whole thing to compare notes with. I am sure all the leg 4’s will be keeping an eye on this thread.
Thanks
Sarah
Hi
I have posted this on behalf of Terry
Kind regards
Katie
My wife was on Xeloda ( only) for over a year. Tiredness and a few sore joints were her main problems. The tiredness was pretty devastating in her case but that may not be just down to the Xeloda.
Brittle nails was the only other thing she mentioned.
Take care
HI Sarah,
I did unfortuately have quite a few side effects with the Epi , mainly mouth ulcers,throat infections and constipation , i also had the flu like symptoms after the GCFS injections so unfortunetly ended up haveing antibiotics a few days after each cycle, just a bit unlucky i quess, as i know lots of other ladies fair well with the epi, i quess everyone is different in there reactions to different drugs, I used Difflam throat spray amd Difflam mouth wash which helped,Jelly is good as is pineapple if you get any mouth problems, i also found ice lollys great too, Omperzole is brill for heartburn ,and i was perscribed Fungisil lozengers for the oral thrush which was very good. also took Movicol for constapation which did the trick lol, Hopefully you wont need any of these , but if you do get any probs dont suffer as there are lots of meds to help.
Im glad to hear that the epi is not going too bad for you ,and that you dont have too many side effects, have you been given anything for the heartburn? time does go quickly and before you know it youll be starting the Xeloda (no more steriods then so thats a plus too)
Im haveing rads at the moment and only have 3 to go now, ill have the last one on thursday haveing 23 in all, cant believe that im nearing the finishing line Yipeeeee , i started Tomoxifen about 5 weeks ago and so far so good only hot flushes side effect wise hope it continues lol. Just to say to all you ladies who are starting chemo ,you will get through it and i know youll be fine, , before you know it youll be giveing tips/advise to other ladies begining there journey.
All the best
Lindiloo x
Just bumping this up in case anyone else can comment
Thanks x
First of all, good luck on Thursday Paula. I’m sure it will go well for you. I shall be finally starting mine on Monday having got rid of the infection I had … wahay! I never thought I’d be so happy to start chemotherapy!! Daft isn’t it!
Some good questions about what to expect and thanks to Lindiloo for her comments. I too am on the TACT2 Trial - accelerated (Arm 4) and even before I start, with this trial it’s easy to see an end to the Epi.
I’m planning a few things for July and have decided to just book and hope for the best. I’m hoping that the Xeloda won’t be too bad!
Gill
Hi Gill
Nice to hear from you I am glad your infection has cleared up ok.
I know what you mean about being happy to start chemo. I am not good with the waiting game.!!
Excellent news that you are on the same leg on this trial…definately have to keep in touch.
Good for you planning things in July…!!! You can sort of see an end to this part then can’t you?
Are you having rads after this? If so how many?
All the best for Monday Gill
P x
Hi Paula
Like you, I’m no good at the waiting game - the sooner I get this started, the sooner it’s over and life can move on again. Waiting is just limbo land with too many fears of what to expect nagging at me!
No, I’m not having rads. When I was diagnosed I was told to expect rads but no chemo - seems I ended up the other way round!! I’m HER2 positive so that will be the next thing to sort out. We’ve talked about herceptin, but the oncologist has said that some new research is pointing to different ways of dealing with HER2. I honestly don’t know what he means yet and haven’t followed this up. No rush for that. After that I guess it’s the final part of reconstruction and then tamoxifan. The joys of it all eh?? 
Good luck tomorrow and let us know how you got on. I’ll be interested!
Gill x
Hi Gill
So are you under Mr Symcock?
No rads…thats good then !
What grade was yours Gill? Did you have lymph node involvment? Are you a Brighton lady or surrounding area?
I am about 40mins from Brighton, which I guess isn’t too bad.!!
Getting a bit nervous now as had a few phonecalls from peeps wishing me well for tomorrow…!!!
Take care Gill, will be in touch
P x
Hi Paula
I’m under Dr. Bloomfield. He’s excellent and is great at explaining everything. I’ve heard that Mr. Symcock is also excellent.
My cancer was Grade 2. I had a large tumour which as I understand it was a mixture of invasive cancer and DCIS - apparently just over 6cm. I was picked up via the screening programme and never had a lump that could be felt at all. I was very fortunate in that it hadn’t spread to the lymph nodes and during surgery a big enough margin was left for me not to need rads. However, because of the size of the tumour with the risk that stray cells could be in my bloodstream, plus my HER2 status, chemotherapy is needed.
What about yours?
I live in the centre of Brighton so getting to the hospital is easy. I love being within walking distance of the sea - nothing nicer than strolling along the seafront no matter what the weather!
Again, best of luck tomorrow. I’ll be thinking of you. I’m up at the Cancer Centre early in the morning for a blood test - then it’s off shopping etc
Take care!
Gill x
Hi Gill,
Oh ok I don’t know that Onc…!! Yes mine is pretty good,nice and easy to chat too, not that we spoke much I listened alot…!!
Mine was grade 3, 2.5cm they though was benign until they took it out. I had 2/13 positive lymph nodes so chemo and rads are a definate.Mine is triple negative. I am 43 and have 2 young kiddies, one 6yr old and a 17mth toddler.
Ohh in the centre how nice. I have many happy childhood memories of Brighton.
You enjoy that shopping…who is your trial Nurse?
Will let you know how it goes, you take care too
P x
Hi Paula
How are you doing? I was thinking of you yesterday and hoping everything went as well as possible for you!
Gill x
Hi Gill
I was chatting to Helen the trial nurse saying we were in contact she thought that was very nice indeed bless.
I am so far so good. No sickness as such, just very lightly now and again, no bad taste yet had my pink wee yesterday but back to normal now. Still I guess its early days but whilst having the IV I just chatted to the nurse and hubby and then sat reading trash mag !! All went very smoothly. Any questions pls ask,
Must go my toddler is wrecking the keyboard and keep having to delete his so called tying…awww bless him
Good luck Gill, keep in touch
P x
Hey Paula
I’m so pleased you’re doing well - I hope you continue to do so. I just want to get started with mine now so that whatever it’s like, I’m in there and doing!!
So how long did it all take? I assume you’ve had your follow up injection - how was that?
I was thinking of you so much yesterday, I forgot to respond to your comments/questions previously. Helen is wonderful. I like her so much. I shall mention this conversation to her as well when I see her on Monday afternoon. Chances are Paula, we’ll meet up at some point. I can’t believe that won’t happen given we’re going through the same process at the same place. Hey, we could organise this when we wish to.
In my fear and planning, I’ve gone into blitz spirit!! Oh yes! I’ve been cooking for the millions recently so that I have plenty of my home cooked ready meals in the freezer. I know this is crazy but what the heck! I have soup, stews and all sorts … and loads of fresh stuff to make smoothies with. Hopefully I’ll feel fine and will look at my preparation with laughter. Well, I’m laughing now!!
Hope you’re okay! Oh, and your toddler sounds lovely! So sweet!
Take care
Gill x
Hi Gill
You must be counting down this weekend now huh !! Well as for time my appointment was 2.30 and I am not sure what time I went in room but I was done and dusted by 4 and on my way home.
I had my GCSF at my docs yesterday and thats fine.Plenty of tummy for them to pinch and put it in…lol!
Yes Helen is great and yes we could meet up for sure. It really was not as bad as I possibly thought. I am still okish just tired today but my toddler is pretty unwell and we had to be taken to hospital yesterday evening. They were working along the lines of meningitus. We have had a really anxious time and I came home late last night as hubby is with him. My 6yr old is with her granny and my hubby was worried about me getting some “proper rest”.
Our poor babe had high temp, sickness and now has ear infection in both ears and very small red rash that they were cautious about hence being taken in ambulance to hospital.
Poor little babe had to have canulla in his hand for bloods and was sooooooooo brave. He is only 17mnths old. His temp has come right down and he hasn’t been sick anymore. I am gathering up bits to take down as they said he “may” have to stay another night if bloods not back. My GP gave hm a penicllin shot before we went to hospital in case it was Meng.!! All such a worry, I have spent most of the night tossing and turning so not really rested at all. We had to go to Eastbourne about 45mins away. !!
Well Gill I had best get on and get down there. I will be in touch and you will be fine. Just keep thinking this stuff will be doing you good.
Take care and chat soon. If I don’t speak before monday GOOD LUCK …!!!Iyou will be OK…
P xx