Hi ladies
I am hoping there are some ladies out there who did the TACT2 tria and were on the leg with the above oral chemotherapy drug.
There are a few of us gals coming near the end of the Epi and would like to hear of anyones experiences with the capacetabine, good and bad or course…!! Hopefully more good, theres wishful thinking.
Huge thanks in advance
P xxx
Hi paula
I did the tact2 trial and had capecitabine. It was much better overall than the epirubicin. For me one of the best bits was no venflons, how i hated those. I felt much less nauseous, bloated & had less heartburn & had more energy, didn’t have the 2 days in bed that i had to have when the epi kicked in. I did develop the hand/foot syndrome (sore palms & soles of feet with tiny watery red bumps, but no blisters) that they warn you about despite moisturising frantically & frequently, so they reduced my dose a little which helped & i had to stop walking around my local national trust park to allow my feet to settle. That was a disappointment as i’d not really felt well enough on the epi to do that, i tried a few times and felt most peculiar!
So overall much better and if you’re heading for radiotherapy after the chemo thats better again! It gets easier from here on in, or at least it did for me.
Wishing you all the best
Rivergirl.
Hi again,
forgot to say my hair started coming back quite quickly once i’d finished the epi, the capecitabine doesn’t affect hair. My hair has come back very curly which is a bit of a shock as its always been dead straight and i’m trying to get used to it, honestly never happy! i was so upset to lose my hair, couldn’t wait for it to come back & now i’m having to try & like it curly!!
Rivergirl.
Hello tact2 trial girls.
I was on arm 4 of this trial and unfortunately i suffered badly with the hand and foot syndrome, it felt like i was walking on broken glass all the timeand my hands were so sore and red i had trouble picking anything up.
I don’t wish to scare you but the tablets caused my bowel to stop working and i ended up in intensive care on life support with pneumonia and septacemia. The symptoms were diaohera (spelling!!) and a swollen stomache so please beware,this is very rare but can happen.
Candy.
Hi Rivergirl
Thanks so much for all that info. It’s good to hear from people who’ve experienced the Xeloda. I was told today that if I have problems with my feet, the hospital will recommend Vitamin B6. I would imagine that would be helpful. I shall be ordering some Udderly Smooth cream which I’ve heard is good. Other than that, it’s fingers crossed and hope for the best. I plan to be doing the Race for Life when I’m on the Xeloda in June!!
Thanks so much for taking the time to give info. Appreciated!
Gill
Hi Rivergirl
Just to echo Gills comments and say thank you for the response. Its good to know it will be easier than Epi…!!!
Many Thanks
Paula x
Hi Gill & Paula, thanks for your thanks! It will indeed be easier than epi, wishing you both the best of luck with it. Have been telling a lady on another thread about the look good feel better workshops, highly recommend one. Boosted my self esteem alot at a difficult time when my hair was on its way out etc, the details are on their website, i travelled a little way for mine but it was worth it. I’d recommend you have a go & book one. Its a nice treat & good fun.
Take care both of you,
rivergirl x
Hi Paula,
I was on arm 3 of the TACT2 trial and the Capcetabine/Xeloda was a breeze after the Epi!! Yes, it’s a hassle having to take 10 tablets a day for 2 weeks, but then you have a week off, before starting the whole cycle again. The only real side effect I had was the Hand Foot Syndrome and that took a few weeks to kick in… the tips of my fingers got sore and cracked / peeled, but there are worse things in life to deal with. My feet got tender and peeled a lot, but it didn’t really stop me doing anything… and walking is a significant part of my job. During the Epi, I worked 2 out of the 3 week cycle, whereas, when on the Xeloda, I only took the day off when I had to go to the hospital to pick up the tablets. It was also a relief not to have any more damage done to the veins… although having the bloods done got progressively harder!
Incidentally, I never got the awful fatigue you’re told about… I can honestly say that through the 6 months of chemo and 29 rads, I kept going fairly well, kept working to try and keep some degree of normality in my life and no fatigue. I was told that keeping up a good degree of activity can counteract any fatigue you might get… so I did and was lucky enough to avoid it. I suppose my relatively young age (44) helped. Like someone else mentioned, my hair grew back very curly and I’d never had as much as a wave in my hair before… it had always been poker straight! I also decided that I didn’t want to put any more nasty chemicals on my head any more and would let Mother Nature have her way, so I’m prematurely very silver-headed now, but actually quite like it!!!
Good luck with the rest of your treatment. Thankfully I finished mine in late January, but occ pop in here to check things out… first mammogram next week… aagghh!
AliS
Hi Rivergirl and AliS
First of all Rivergirl, thanks for the recommendation to participate in the Look Good Feel Better workshops. I’d love to do this but don’t think there’s anything in my area. I shall have to find out where the nearest on is to me. It’s such a good idea.
AliS, thanks for that info. It’s so encouraging to hear that you were able to get on with things, particularly the walking, despite hand/foot syndrome. I’m a great believer in carrying on with things as much as possible and based on what you’ve written believe that will be more than possible. Thank you!!
Good for you regards the hair …!! I’m just losing mine so will wait to see what returns! And best of luck with your mammogram next week!
Gill
Thanks Ali and Rivergirl
Good luck with the mammogram Ali
P x