Advice on Epi - Xeloda chemo please!

Hi All,

I’m hoping that some of you may be able to fill in me on what to expect with my first chemo treatment. I have joined the Tact 2 trial and have been selected for group 3, I am due to go for my first Epi tomorrow afternoon.

I have already bought Aloe Vera toothpaste and mouthwash which was a tip I picked up on one of the other threads.

Any advice on what to expect would be gratefully recieved as I really have no idea. Most of the stuff I’ve read has generally been about FEC or Tax - I have no idea what the latter even is.

I was planning to drive myself to hospital - is this a good idea will I be ok driving home again?

I have also requested a cold cap - hoping to hang onto as much hair as poss for christmas! Has anyone else tried this and if so did it work?

Any advice or experience (good or bad) of this treatment would be really helpful - I figure that if I have some idea how bad it will be I’ll cope better.

Thanks and best wishes to all who have a reason to be using this site.
Kez x

Hi Kez

I have no idea what the Tact 2 trial is but I received Epi - CMF. I was advised by my onc that even if I used the cold cap, my hair would fall out anyway with the Epi so I didn’t bother. My hair fell out almost completely within 3 weeks of the first Epi. Whether this would have slowed down using the cold cap, I don’t know but I couldn’t cope with thinning hair either so I took the view that if I was going to lose it I may as well get it over and done with quite quickly and ordered my wigs in advance. I used all kinds of mouthwashes etc but still got mouth ulcers but my onc then prescribed Fluconazole tablets and these made a huge difference, not only keeping the mouth ulcers away but they also helped with the awful metallic taste you get with Epi.

I got all my chemo at home so didn’t have to drive to and from hospital and therefore wasn’t stressed with traffic, waiting to be seen etc but I always felt well enough to go out driving afterwards. Hope I haven’t been too negative. Good luck with your first Epi.

Margaret x

Hi Kez

I am also on the TACT2 Trial (Arm 4). My advice would be to take all the anti-sickness meds they give you. I did this and was not sick once while on the Epi although it did make me very tired. I also used the cold cap and this was very successful for me. I did lose some hair from about day 19 onwards (after 2nd accelerated cycle). Some combed out every day but I didn’t develop any bald patches!!

As for the Xeloda - I did develop hand-foot syndrome after the 2nd cycle (red & itchy). Just be prepared and moisturise hands and feet at least twice a day and try not to put too much pressure on them (difficult I know when you have to walk anywhere!).

I didn’t drive myself while on Epi and also it is nice to have someone with you while you’re having treatment - especially as you’ll be there longer with using the cold cap.

My very best wishes.

Carol

Hi Kez,
I’m on TACT2 arm 4, with 1 epi to go on Thursday. I also used the cold cap, and have thinned a bit on the crown, but not badly.
So far I have been a bit tired, but the sickness etc has been well controlled by the tablets they give you. My blood count has been fine, despite a cough/cold, helped by the GSHF injection. In short it has been much better than I anticipated.
Take a scarf/hat, warm clothing and a book, as they wet and condition your hair before putting the cold cap on, and it’s a bit of a mess afterwards, and the cap stays on for 2 hours after the epi, so it’s good to have a book to occupy yourself.
I haven’t driven myself , but that’s mainly because friends have come with me.
I also usually make sure the house is warm to come home to, and that I’ve got things ready to make life easy in case I feel like flopping!
Hope this helps.
Good luck for tomorrow,
Meg

Hi there - I am on Tact 2 too and am on Epi and Xeloda. Welcome to the club!

The biggest thing I have learnt so far about cancer treatment is that everyone is different. I was horribly sick with Epi despite trying different anti-sickness drugs each time. I found it horrendous, to be honest, but in the week running up to the next dose I got some life back and we tried to go away that weekend to get away from it all. I would recommend that big style. The Epi made me very tired in a way that I could not have imagined. I did not drive after my surgery in June until last week and that was largely due to exhaustion. I could have driven, but was glad not to have to.

I am now on round 2 of Xeloda and am finding it wonderful by comparison. I have not had hand-foot syndrome but I know that doesn’t mean I will not get it further on. I moisturise hands and feet twice a day and then top up on my hands whenever I am passing a moisturiser that I have positioned in various rooms about the house (you have reminded me that I have not done so since this morning and must do that now…!).

I found the cold cap to be torture. I could not stand being so cold. It made me cry and shake all over so i gave up. On the subsequent treatments I felt liberated not to have to spend another 2 hours at the centre and skipped off home. Once my hair had gone I got used to my wig fairly quickly and now it is not an issue. I am delighted to see my hair coming back in already. I did not lose mine until I had had the 3rd lot of Epi so the chances are you could still have yours at Christmas.

Although I found Epi really hard, you get through it. I am lucky to have a Maggie’s Centre where I live and I got huge strength from going there once a week to a course. Even when I felt too yuk to go anywhere I made myself go there (I could not have driven - I got taken) and although I came back exhausted sometimes, it really helped my mental well being.

We all need to work out our coping mechansims. You will probably find you have better times in the cycle and it is nice to set up treats for them. Feel free to ask anything else and don’t let me put you off!

Sinclair

HI Kez,
Im also on the Tact2 trial Epi/Xeloda arm 4 (accelerated) as others have said treatments affect different people in different ways .I had a horrible time too on the epi i seemed to get every side effect going (sorry) but that doesnt mean you will, ive read of many more women on here who seemed to sail through it . My advice would be to make sure you take your anti sickness meds even if you dont feel sick cos its easier to prevent the sickness than wait and see. Also the steriods and sickness meds can make you constapaited so eat plenty of fruit and fibre.If you do get any mouth ulcers Difflam is a good mouthwash also bongela helps, also try and drink lots of water so as to flush the epi out quickly. Like sinclair said i too never realised how easily exshausted id get . Im now on round 2 of Xeloda and so far this is a walk in the park as yet i have had no side effects to speak of so fingers crossed ,im using E45 cream on hands and feet just in case. The good thing about the xeloda is its a oral chemo so no more IV infusions (horray) and so fewer trips to the hospital. Try and remember if you do get any side effects dont suffer in silence ring your chemo ward and they will give you meds to combat them.Good luck for tomorrow and all the best.
lindiloo x

I have now finished my treatments but was on epi - cmf - arm 2 accelerated (started in April)

I found Epi very doable if you take all the tablets given. after the first epi within days we were going out on day trips and I felt reletavely good. I drank tons of water which seemed to help. I did get very tired and this got worse after each one. I did get a few infections but with antibiotics they cleared up. I forced myself to go for a walk each day which was hard when I was sooo tired but again this helped me. I wasn’t sick once with any of the treatments

good luck - when you are about to start it seems as if the treatment will last forever but suprisingly it did go fast. I am now looking forward to a holiday later this week and when I come home I will be returning to work

Thank you for this. Especially for being honest with me, I feel better knowing that even if it is very rough you have all made it through and for the most part found the Xeloda easier. At least if it is really horrid I know that there is a light at the end of the tunnel.

I am going to try the cold cap for the first two sessions in the vain hope that I’ll retain some hair for the social season (assuming of course that I’ll feel upto socialising anyway!). I assume that after that it’s probably a waste of time as the second set of treatment is tablets will my hair not fall out anyway?

Thanks again for all of your replies and tips. I am due at the hospital at 12.00 so will no doubt be posting a million more questions this evening and tomorrow morning.

Thanks, good luck and best wishes to you all
Kez x

Xeloda does not affect your hair. It should start to grow back soon after you start the tablets. Mine is now a shawdow over all of my head and I am still trying to work out what colour it will be.

Good luck to you Kez and anyone else in the TACT2 club!! I’m on arm 4 and did my last epi last wed so about to start the xeloda.

Before I started it, I read on here that it was “do-able” and that really sums it up. I’ve tended to have 3 or 4 days after each treatment when I’ve had to rest and take it easy as I’ve felt a bit off and very weary but nothing really awful, certainly not as bad as flu or a sickness bug for me. I’ve not been sick at all (as already said - make sure you take all the anti-sickness meds) I’ve just been a bit queasy for a few days but nothing really bad. Lots of water helped me. Also, lucozade seemed to settle my stomach and give me a bit of an energy boost. I have been constipated each time and have countered this by having loads of fruit and veg in the few days before and after each treatment. If you can’t stomach prunes or prune juice, then V8 juice is a good alternative. My hair didn’t come out until the third treatment and there’s still the odd little stray bit. I think my hair has the stubborn characteristics of its owner. My treatments have all been on a wed and by the monday each time I’ve felt more back in the loop and by the tues I’m raring to get out of the house and do something (shopping trip to Matalan today!!).

So, good luck and my treatments certainly seem to gone by pretty quickly. As soon as I start the Xeloda, I’ll be waiting for my hair to grow back and looking forward to that. I’m buying myself a new hairdryer in anticipation!!

Nicola

Hi Kez,

Guess you’ve had your first dose of Epi by now… Well, I seem to the only one who’s answered that is on the same arm of the Tact 2 trial… arm 3… and can’t believe it’s 25 weeks ago that I started the long haul… tomorrow morning I’ll pop my last Xeloda tablets… YAHOOOOOOO!!!

Anyway, I’m not going to do the doom and gloom side of it, but echo the others that have said it is very do-able… and stress that everyone’s experience is different. I occasionally meet a lady at the hospital who is on the exact same regime as me, and on the very same timescale and she’s had some similar symptoms as me, but firstly didn’t lose her hair and secondly, didn’t throw up once (boy, am I jealous!!) I did throw up a lot the day following Epirubicin, but with the anti-sickness meds, most don’t seem to… I was just unlucky! My chemo treatment was usually about 3pm and I got the train to and from the hospital and felt absolutely fine that evening. I did try the cold-cap (they never wet my hair first, just put it straight on the head)… yes, it was cold, but I found it very tolerable and worth a try… didn’t work for me, but did for the other lady, so nothing ventured, nothing gained… give it a go girl… worth a try!!

I didn’t suffer from the fatigue others have, so you may not… think positive. My treatment was on a Thursday, so Friday was a complete right-off, Sat a bit better, etc… and usually I was back to work by Tuesday, albeit on a bit of an easier workload. I found I needed to work, to keep some kind of normality in my life… I live alone and didn’t want to sit at home, getting down and feeling sorry for myself. It has worked fine for me. Each cycle has been a bit different.

And so to Xeloda… much kinder on the body!! I had no diarrhoea at all, hair started to grow back and yes, I did have a bit of the Hand/Foot Syndrome, mainly during the 3rd cycle. Like the others, I plastered on the E45 cream, usually morning and night. I couldn’t avoid putting pressure on my feet, as my work involves walking much of the day!

I actually think the 3rd arm was the best to get (sorry everyone else), but not having the accelerated Epi gave the body more time to recover. My veins did start to protest and the forearm was sore, but that cleared up once on to the Xeloda. And getting blood tests can be an issue for some… I really only had a tough time on the last one. A tip that might help is to arrange to get your blood tests done at your local doctor’s surgery the day before chemo… saves an extra trip to the hospital… you’ll have enough of them.

Anyway, hope this helps… any questions feel free to pm me… also look on bcpals forums…
As I said, your experiences may be different to everyone else, but you can pick up a lot of tips from these forums.
By the way, I’m 44 yrs, and don’t know if age affects how you cope with the various side-effects.

All the best for your treatment and hope today went well… keep smiling… the time will pass and you’ll eventually be able to put all this behind you.
Take care,

Alison x

Hi Kez,

I was in the same arm of the Tact trial as you - epi followed by Xeloda.At the time, I was worried about how I would get through it - but you just do. With the Epi I did feel a bit nauseous but made sure I took the anti sickness medication religiously. I never once threw up or even felt like throwing up. I did suffer from constipation and this was the biggest pain, but I took a product called fibregel and that sorted that problem out. My hair fell out; wasn’t offered cold cap and wasn’t bothered. I did get a friend to drive me to the hospital for each of the Epi sessions.It was nice to have the company and although I didn’t feel strange after having each dose, it was good to relax and let some else worry about the traffic.

Xeloda tablets were absolutely fine. No side effects and best bit was that hair started to grow again -so I was still on chemo, but starting to look like a human bean again. Towards the very end of the Xeloda I did get very minor redness on hands and feet - but nothing that caused any problems.Whilst on Xeloda I was advised to lay off walking the dog and keep my feet up when ever practical. Apparently, it’s friction which causes the Hand/Foot syndrome.

Have now finished all my treatment- apart from taking Nolvadex D for a few years, followed by arimadex. Hair is now back with avengence. Grew back brunette, was a highlighted blonde previously, grew back curly, was poker straight before. I’m now at the stage where I can’t do alot with it. All I’m trying to say is that at the beginning of 2007 I was worried and frightened about the chemo - 11 months on, it’s all behind me and I did cope- you will too.

Janeyb
x

Hi Ladies,

Well, I did have my first treatment on Tuesday afternoon and it was not nearly as bad as I expected. The cold cap was a bit uncomfortable but it was bearable - they didn’t wet my hair first though. I came home with a bit of a headache and feeling mildly nauseous but otherwise OK. I have been a bit tired but have still managed to do everything as normal, even managed a workout in the gym this morning (all be it slightly shorter than usual). Not sure yet if I have got off lightly and am still in anticipation of any hideous unwanted side effects but fingers crossed so far so good.

Would just like to say another huge thank you to all who replied to me it really is so comforting to know that you are all either on your way through or have made it and are still so up beat and positive about things.

Best wishes to all
Thanks
Kez x

Hi Jayneb… I didn’t know that the Hand/Foot Syndrome was aggravated by friction… nobody told me! Having said that, it would have been difficult for me to avoid walking, as my job involves walking most of the day… bit late now, as I finished my Xeloda last week… yahoo! I did have sore feet…blisters… cracked finger tips… but nothing that won’t heal… and the hair’s coming back nicely, albeit very grey… far too young for that at 44 yrs, but I don’t want to put chemicals on my head any more!! Funny how cancer changes your views and approach to every-day life issues! I guess I’ll be a snowy top from now on… sigh… there are worse things to put up with, eh?!

AliS