Hi
Glad most of you are okay. I am not having such a good time… Basically seem to be intolerant to Xeloda. Got lots of anti sickness tabs and steroids last week but still had to stop taking drug due to severe vomiting. Although some of the anti sickness tabs made me so tired I was semi-conscious!
So, back onc tomorrow for new plan. I have ibc, triple negative with multiple tumours in my lungs, so not sure if a reduced dose will help or if I have to try something else 
Sue x
Hi blackspotk hi ladies sorry to hear your s e are not gd I’m norm really sicky on chemo I had amend that was v gd I don’t know if u can ask about that I’m also tn with lung and node mets maybe you cld ask about a reduction just to see if that will work before they change you is this y first chemo since sec dx I have others but only worked for short time I was doing really well till last night think i spoke to sn I had my last lot of tabs then hr later had terrible stomache cramps was on loo for a hr god never seen so much pxxlol feel ok today but god the pain and cold sweats where terrible glad there are a few new plp to chat to all tc let us no how y doing Laura
Hello blackspotk - I’m really sorry to hear you’re having such a horrible time on Xeloda and hope they come up with a plan for you soon. Fingers crossed whatever that is will be much gentler on you, but REALLY tough on the cancer. That’s what we all want to find, isn’t it?
Laura - hope you’re feeling better today and can enjoy your week off. I probably felt worse on my first day without tablets than at any other point in the cycle (makes sense, really), but felt much better as the week went on. Hope you will, too. Have you got rid of that chest infection now?
Take care everyone xx
Hi angelfalls glad y ok yea think most of inf gone always had a bit of a cough so hard to tell really gtg tue so see wat they say my bloods are norm ok think it’s harder as time goes on hopefully it will be kind to us gd luck tc Laura
Hello Ladies:
Blackspot and Laura: Sure hope you both start to feel better soon and hopefully can stay on X as I hear it can do good to keep things at bay and under control - do tell us what you Onc advise. Are you both on 2 weeks on/one week off? I’ve read that maybe doing to 7 days on/7 days off also helps and is just as benefical. I have also heard that once your body get acustomed to the drug, SE can get better. We all need something that is kind to us and WORKS !!
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It has been so for me… I was changed to week-on-week-off from my 5th cycle. I’m now on cycle 15.
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Yes, I mentioned this to my onc and I was told that this often happens.
Another option is a reduced dose taken every day - no days off. I am in my sixth week of this, and the side effects seem much more manageable.
J x
Hi Ladies
I have had 5 cycles now and I have definitely found that my SEs have got easier each cycle…Apart from bloods! In fact the last 2 I haven’t had to moisturise my feet at all! I do have a major problem with my bloods being affected though, low red cells, white cells and platelets, each time it is one of the above, but they vary…I am going to guess it is red this time as I feel a little breathless!
My treatment has been changed to 10 days on and 11 days off…has anyone else been offered this?
One minor query, has anyone else noticed that their skin colour has changed? I didn’t notice it until I looked at some photos taken over Christmas, in some I look quite sallow, almost a beigy/orangey colour! I was worried about jaundice, but my eyes are fine. The oncologist did mention that it can affect skin pigmentation, but that was when I was showing him some strange brown blemishes! perhaps a high dose of peachy tablets will turn me into a peachy colour!! at least the tablets aren’t green.
Hi Nicky and all, yes I’ve had to go for a shade darker foundation.
Also have lots of little moles (have always had lots anyway) and brown spots…heard today I’m still stable…well a bit better than stable, so happy, so relieved. I’ve been on this chemo for nearly 4 years now. Just so grateful for this long period of stability.
Good Luck to all. x
So it does sound like if you can “tweak” the dosage or change how mnay days you take the drug - ti can be more user friendly. Something to check into. Do keep us updated on what your doctors recommend cause if there is a chemo we need to take, hopefully you can stay on this one as it’s seems to be less toxic. Geewiz and Mrsblue - how is this drug working for you - are you both getting this disease under control from X?
Take care ladies !
Hi all hope u are all doing well I just want to see if anyone else might of had this last eve of tabs I had terrible stomach cramps and a bad belly was on look for hr felt awful and for some strange reason my belly as hurt every eve since I had sim probs on my other chemo but was hoping this wld be dif off to see onc tue so see wat he says tc all Laura
Hi Nicky
I look tanned and have done since cycle 2.
Look after your feet, my feet were completely normal until cycle 6 now I’ve got bad slits in my heels and my big toes are bleeding and pussing. They should be better now I’ve had the nail cut away.
Love Sue xx
Hi Laura
I had very bad diarrhea with stomach cramps on my 1st cycle, I had the dosage reduced because of that and a bad facial skin reaction.
I now stil get stomach cramps and a some diarrhea but much milder, I seem to get them worse on my week off.
As soon as I get a cramp now, I take the warning sign andI go to the toilet. I never leave the house on my week off without getting 2 imoden.
The cramps are awful.
Sue x
Hi sue thanks v much i will see what he says on tues only tummy probs at moe and only one night of sitting on the loo I’m getting pains mainly in the eve but only after eve meal weird .
The other thing for some real reason I woke at 4 this morn wondering about intercourse no as mentioned anything about this to me do we still practice safe sex as I’m on 2 on 1 off when is it safe to go without protection I’m safe from pregnancy is it the same as norm chemo when is it safe to to the deed as I’m gona be on x for yrs! And my poor hubbie will be pulling he’s hair out does anyone know maybe I’ll ask weird wat wake us up many thanks Laura
Laura, hi 
I’ve posted some thoughts on your other thread,
share.breastcancercare.org.uk/forum/viewtopic.php?f=25&t=35608&p=630168#p630168
Hi girls,
Has anyone experienced numbness / tingling on Xeloda??
For the last few days, I had quite bad numbness / tingling on my left little finger - it doesn’t feel like mine! And it kind of run along the outside of my left arm, too. It feels a bit like I’ve slept on my arm all night.
From what I’ve read, sounds like it’s related to hand feet syndrome. Just wondering anyone had this.
I’m on my 8th cycle, only just switched to 1 week on 1 week off.
Thanks xx
Hi
I’ve had numbness in my hands on waking up in the morning and I’ve had cramp in my legs, at first I didn’t think anything about it but it’s happening much more it would normally.
Sue x
Hello Xeloda Divas:
Almost finished my 2nd cyle and all is well.
Nicky: So far I have not noticed any changes in my skin colour but again I have not yet completed 2 cycles so who knows what will happen down to road. Your comment about the pills not being green sure made me chuckle but looking tanned would not be the worse thing to happen LOL
Luara: I do believe that one of the SE is gastro issues - again, maybe reducing your dosage or the frequency may help?? Hope your Ocn can help with that when you see him/her.
M1yu: I do experience some tingling in my feet but very little and only from time to time, again another SE.
Belinda: 4 years !!! How inspiring to hear that you have been on this drug for 4 years and stable- That is where we all want to be. Can I ask you what mets you have and how long you were on the drug when you started to see the improvements ?Long may you run with that!
This is a difficult journey we are on but we are strong and will keep on fighting. Happy weekend to you all and god bless you all!
Hi WarriorofHope,
You asked how Xeloda was working for me - the answer is very well (I think). I’m just completing my eighth cycle, but the first 6 were in conjunction with Abraxane intravenous chemo. I was scanned just prior to the end of that, and told that my bone mets were in remission. Since then I’ve carried on with Xeloda alone as a (hopefully long term) maintenance plan, on a reduced dose but taken every day with no breaks. My news is good, but I’m not sure yet how much of that is due to Xeloda and how much to Abraxane, but fingers crossed the Xeloda does its stuff!
Best wishes to all,
J x
Hi WarriorofHope, I was diagnosed in 2003, (I was in my early 40’s) breast cancer and bone mets together after my hip spontaneously fractured. I had an excellent trouble and pain free hip replacement. Then had 18 months of Tamoxifen followed by 3 and a half years of Arimidex. I was switched to chemo, Xeloda, in April 2008 and have been on a continuous 2 weeks on 1 week off cycle ever since and will stay with this chemo until it stops working. Also had one single met to each ovary, which they suspect have been there a while but my latest CT scan has one ovary now showing as normal and the other is now mostly a benign cyst…so Xeloda is continuing to work well.
Have had no bone mets progression on this chemo and I’m pain free.
I also have Ibandronate bisphosphonates.
Hope all here have good results with this chemo! x