Hi everyone,
Hope you are all doing ok , i had my pre chemo assesment yesterday and have signed up to go on the TACT2 trial , i have been allocated Arm 4 and should be starting the chemo sometime next week (just waiting for the date) i know a lot of ladies here are on the TACT2 trial and hope mabe you can give me any advice . Ive read all the info and know its the accelerated EPI-Xeloda but it would be realy helpfull to get any advice from anyone who can tell me what to expect.
Thanks for all the help and support you have all given me earlier in helping me to make a decision about TACT2 .
Lots of Hugs
Lindiloo.
Hi Lindiloo
Im on tact2 trial but arm 3 EPI-Xeloda not accelerated.
I was very lucky on the injections no major probs just tired, mouth ulcers, and very heavy frequent periods. The worse thing for me was having the injection as my veins were not happy and decided to hide away everytime a needle came near.
The tablet side is much better and a lot easier not so long at the hospital and no more needles.
They do look after you on the trial and any side effects you have ie; ulcers etc you will get medicine for.
Ive got 2 more lots af tablets before i start rads and feel quite well at the moment. Oh forgot to say expect your hair to fall out, I shaved my off on day 13 of the treatment but i now have a sort of bumfluff covering all over now and go outside without covering it. It falls out quick but returns equally as quick.
Hope that helps
jackie
x
Thanks jackie, im so pleased that you havent had too many of the alfull side affects and i hope i am lucky too . I think its the fear of the unknown isnt it, i know ill be a nerveous wreck on the day i start chemo and will be glad when the first ones over . Im expecting the hair loss but am still dreading that part (hard for us girls eh) well done with getting through the chemo not long to go now. Good luck for when you start your rads, and thanks for the advice.
Best Wishes
Lindiloo
Hi Lindiloo, I am on arm 4 of the Tact2 trial as well. Now just started the 4th cycle of Capecitabine so nearly finished.
With the Epirubicin I had few side effects, just very tired by the 4th cycle. Because the chemo is every two weeks I felt my body took more of a battering. The injection 24 hours after the chemo gave me a backache but I have damage to my spine anyway. And my local district nurses came out to me to give the injection and to take my bloods so I didnt have to go to my surgery or hospital to have it done. The good thing is that it brought my bloods back to almost normal before the next round of chemo. And although you dont have the injection with the Capecitabine the effect lasted over so my bloods on Wednesday were still at normal level.
My hair came out between the 2nd and 3rd Epirubicin and I got my husband to shave the rest off. I felt so much better with it all off. Now I have 1/2 inch of hair.
Ive had few side effects from the Capecitabine. A slightly sore mouth so I gargled with salt water which sorted it out. Im feeling tireder overall but with any chemo being accumulative I expected it and am taking more rest.
Now I go for my pre-rads meeting next Monday and expect to be having radiotherapy in October.
Best wishes and good luck with your treatment.
Margaret xxxxxx
Hi Margaret,
Thanks for your advice , im so pleased that your comming to the end of your chemo it must be such a relief , im pretty nerveous about starting the chemo but it realy helps to hear other peoples expierences so i have an idea of what to expect. I am keeping fingers crossed that any side affects will be ok for me too. I will also be having rads after, then hormone therapy. Good luck on monday for your pre rads meeting , It will be nice for you to have a well deserved couple of weeks break before starting radiation in october, our bodies certainly get a battering dont they, Please let us know how you get on on monday and good luck with the rest of your treatment.
Best Wishes.
Lindiloo xx
HI Lindiloo,
I’m another on the TACT2 trial… but arm 3, so Epi and Xeloda, but not accelerated. Unfortunately I was quite sick with the Epi, but only the first 24hrs, as they couldn’t sort out anti-sickness meds that worked for me!! Most people aren’t physically sick, as the meds work!! They got it right for the last cycle… I started the Xeloda on Wednesday and it’s strange waiting to see what the side effects are… but, I’ve got none!! Feel absolutely normal - so far! Fingers crossed.
Like the others, losing my hair was the biggest thing to deal with, but it’s amazing how quickly you get used to it. I did try the cold cap for the first two treatments, but I wasn’t one of the lucky ones. It started falling out between the 2nd and 3rd treatments, so got it all shaved off. I have a couple of wigs… some seem to prefer sticking to scarves, but I feel that makes me stand out more and to be honest, some people that don’t know I’ve got bc, haven’t noticed the wig!! Even my mother, who obviously does know, hasn’t spotted the wig, nearly two months after starting to wear it!! That makes me feel good.
I’ve gone back to work, which keeps some kind of normality in my life, and is a distraction from thinking about bc. Obviously everyone’s situation is different, but I feel OK for most of the time and only missed a few of days after each chemo… and I plan my own work schedule, so didn’t overdo things.
Good luck with the chemo and the trial… it just becomes part of your life and you get on with it one day at a time.
All the best,
Alison
Hi Lindiloo,
I am on arm 4 of the TACT2 trial. I have had three of my four chemo sessions. Like you I was really nervous. I am using the cold cap - are you?? The main side effects for me (remember that everyone differs) is tiredness. After the first one I was only tired for three or four days but this time it is taking longer to get over. I have a dry mouth and my hair is thinning although I am hoping to keep it, the cold cap is at least stopping the clumps coming out. The injection makes my back ache for a couple of days but nothing that you can’t handle.
I have my last chemo on 11th Sep (my birthday) - then start xeloda. Not sure about those side effects but reading some of the threads gives me hope - thanks Margaret.
Good luck, sending lol, let us know how you get on,
Tracy xxx
And I forgot about the runny nose while I was on Epi. It was a permanent drip.
Its strange how once we are past each stage everything goes back into perspective. Or maybe its a defense mechanism to protect our sanity.
A hint on the Xeloda. Plaster your feet with cream. Specially the last few days of the tablets. The skin on my feet went very dry and cracked badly. It was painful. But it wasnt the side effects they warn you about. I found nappy cream the best.
Thanks everyone,
Im glad that your all getting on ok with the trial, it makes me feel more positive about it all. Ive decided not to go with the cold cap (proberly will regret not giving it a go) but guess i just want to spend as little time as i have to at the hospital. Ive just bought a wig and sent for some scarfs ect from headcovers.com so at least ill be prepared a bit when the hair loss happens, like everyone im realy dreading losing my hair ,sorry Tracy that your having to have chemo on your birthday but its great that itll be your last epi …good luck with the Xeloda.
Thanks Margaret for the tip about the nappy cream ill definately get some in just in case.
Thanks you to Alison also for all your advice and tips .I dont know what id do without this site, thank god for the internet!
Best Wishes to everyone. Lots of Hugs .
Lindiloo xxx
I am the trial too, normal epi and then Xeloda. I admire you not doing cold cap. I got talked into doing it and it was horrendous. It also makes a huge difference to the time in hospital, you are quite right.
You will work out how the epi affects you and hopefully after the first one will be able to plan some nice things to look forward to. I am just back from nights away with my family (before epi next Thursday) and it is such a boost to get away from it all and feel almost normal (although I did go for a nap during the day and did not do as much as we would have normally).
Do not fear the chemo too much. It is not that scary getting it done.
Sinclair
Hello Ladies
I was on the Tact 2 last year. Obviously Epi - awful!!! then i had the injection within 24 hrs of chemo. I think that helped. Mine was accelorated every 2 wks.
Apart from Herceptin every three weeks I am feeling fine, sometimes abit achy if you know what I mean. But other than that fine. I had a full left mastectomy and full anc. 5 nodes posotive for cancer.
So there is light at the end of the tunnel Ladies. Hang on in there although very hard at times be strong and posotive.
Take care
Love to you all
Tracey
xxxxx
Just back from my pre-rad meeting and its 20 sessions starting Oct. 3rd. After the 20 mile trip into Northampton, trying to park, then being “measured up” and coming home I feel shattered.
Also asked about the hormone treatment afterwards and was told its probably Arimidex for 5 years so I`m off to look up information on that.
Love to you all and take care.
Margaret
Hi Margaret,Glad everything went ok with your pre rads meeting, all the travelling back and forth to hospital appointments are knackering, at least every appointment is one step nearer to getting rid of this horrible desease .Good luck on the 3rd Oct im sure after the chemo youll cope with the radiation treatment just fine, i think the daily cummute will be the most disruptive bit dont you? i dont know much about Arimidex but expect theres lots of info on it on here. Ill be haveing rads after chemo then hormone therapy too, its a long road eh but im sure we will all get through this ok.Ive got my appointment for my first chemo on monday at 2.20 pm ,although im nerveous i just want to get it started now then thatll be another hurdel over.
Hope all you ladies are doing ok.
Lots of Hugs
Lindiloo xx
Hi all,
its my last day on Capecitabine today. HOORAY. I`m tired and achey but feeling good that its finished. Now onto rads.
Lindiloo, how has your chemo gone?
best wishes and lots of hugs
Margaret
Well done Margaret, can’t wait to get to that point myself- am in the middle of second capecitabine cycle. Lindiloo- I had unaccelerated epi and found it quite tough- felt sick a lot, although anti sickness meds helped, incredibly wacked out, I had streaming eyes and nose- possibly due to lack of eyelashes and nose hair. My veins got really difficult and hard but they made sure I got the best cannula nurse on the ward when I was in. A friend had the accelerated like you and she did much better- although her toe nails did go black! You just have to go with what your body tells you I think, and if you are not one of the lucky ones who copes really well, tell your medics, that’s what they are there for.
The capecitabine seems much easier so far- hair coming back. I am getting very dry skin on hands and feet but don’t get so much nausea, just a little bit icky now and then. It seems to upset my digestion a bit and I still have the strange taste in my mouth but not so bad as when I was on epi (yuck that was horriblle, nasty sweet metallic taste all the time, but it stopped me from eating too much so I haven’t put on any weight, lost a couple of pounds in fact). With both the epi and capecitabine, during the last week of the cycle, I feel much better so I try and plan some really nice activities in that period.
I wish you all the best and hope you are one of people who have fewer side effects- there do seem to be quite a few about, but even if you are not, the docs have plenty of stuff to help so don’t suffer in silence.
Jane
HI everyone.
Had my first chemo monday and was fine untill the evening when was very nauseaus all night didnt get any sleep , the sickness pills managed to stop me throwing up (only just) but felt realy yuck for the first 24hrs , The GCSF injection the next day has seemed to given me flu like symptoms sneezing ,achey all over and sores up one side of my nose. Stll constipated too so trying prunes not helped yet though might have to get something for it urgh. But today i am definately feeling a lot brighter albeit wacked but i can cope with that ,drinking lots too but cant stand the taste of tea usealy my favorite drink ,things just dont seem to have the same taste at the min. It seems an endless round of pills too doesent it at the min although i know there helping. Margaret im so pleased for you that youve now finished the chemo well done it must be such a relief make sure you have a nice treat lined up to celebrate, im sure youll breeze through the rads good luck.Not long to go now jane well done your almost at the chemo finishing line good luck with everything.Thanks for all your tips and advice i realy appreciate it it realy helps us all to keep going.
Best wishes to you all
and Lots of Love
Lindiloo xx
Feet have been the worst bit for me. I used Lanoline or a good nappy cream but between the 3rd and 4th Capecitabine my feet were still dry and cracked so I used Flexitol foot cream and during the 4th Capecitabine they have been much better.
My feet feel tender today but they have done on the last day of every cycle.
I`m going to have a few days to recover and then plan something before I start rads.
Love to you all.
Margaret
Hi Margaret,
My hands and feet have started to get very dry on the capecitabine despite using my normal cream- haven’t heard of Flexitol before- can you just get it in the chemist?
Lindiloo- I find the taste changes really depressing too- I love good food and wine but almost everything tastes horrible. (Has stoped me drinking alcohol, which is good I suppose but doesn’t feel like it!)
Citrus fruit still tastes OK to me though, and during the epi when the taste changes were really nasty I ate loads of oranges and grapefruits which may also have helped the constipation. Yes, I do feel I’m nearly at the end, which is great, but it’s gone really quickly- you’ll be looking back too and wondering how it flew by so quick when at the very beginning the chemo days seemed to stretch out forever ahead.
Jane
I got the Flexitol at my local chemists. My skin on my feet and hands are still quite dry and cracked 10 days after I finished the last Capecitabine so keep on moisturising.
I`m just back from a 3 day trip with DFDS seaways. A lovely trip to Norway.
Just a quick comment re Saoirse50’s post … the only thing that my bc nurse specifically said not to take, whilst on the Xeloda / Capecitabine was grapefruits. Not sure why, but I can cope without them for 3 months!
Re the sore feet / cracked skin… did it occur further into taking Xeloda. I’m just starting my 2nd cycle and so far, so good… no diarrhoea and the hands/feet are fine. Long may it last 
AliS