Here it the link for the thread that Nicky is suggesting you might find helpful.
Best wishes Sam, Facilitator
I have had three ct scans so far this year. One pre-operative in January and then another two just six weeks apart during the summer as there were some anomolies in the first of the two. although never really elaborated much on the second. Still I am here and that's the main thing. Just starting to plan the second Christmas that I didn't think I'd have.
Hope things work out for your mum on this treatment.
Thank you snoogle, I hope its good to you when u start taking it again. After how long are u having scans? is it after the nine weeks? Xx
From what I've read on these forums people react very differently to this drug. Some people can stay on it for years with positive results whilst others find it so toxic they cannot tolerate it.
Personally I was on it for a few months before I developed planter palmers syndrome where the skin was literally falling off my feet. I lost both my big toenails. Despite this I did react positively to it but am currently on a break whilst my body recovers. I know that there will come a time when I have to go back on it, but at least I have access to podiatry services now!
I guess what I am saying is that from my own experience you don't necessarily know its working from symptoms experienced. However, I would recommend that your mum uses hand/foot cream like its going out of fashion and that where possible she puts loads of cream on her feet and then puts some socks on as much as she can.
Hope this helps in some way.
Hello there I was wanting to know from those of you who have benefitted from this treatment what positive signs if any did you have prior to the scan that the treatment is working. Also after how long did you have a scan. My mum is due to start this chemo on monday and just wanted to know what tp really look out for.
Thank u xx
I know what you mean about lumps because I am the same with my skin mets. I am on my 4th cycle now and don't know whether they are improved or not (which must mean they are much the same). My husband and my nurse thought the red skin was lighter and less scaly but my Onc seemed less convinced of any improvement so I don't know what to think. I wish I could stop looking at it, it's becoming an obsession.
Fingers crossed you got good results on Thurs, Smiley275. Scaryfox, I feel you and me are at the same point, not knowing whether Cap is doing anything for us or not. I have a scan in 3 wks time - dreading the results.
Know what you mean re lumps, they feel different every day, some days big, small, painful, non painful. I haven't seen my onc for a few weeks, though nurses keeping an eye and updating him by phone, my biggest neck lump developed a rash on the skin over it, looked like a love bite! Then it went itchy and flaky, I put some oil on it and it went back to normal, onc seemed unfazed by this, he's pretty laid back!
I am trying to mentally convince myself that all this means the chemo is working, but it's hard when the lumps aren't going away! I don't know when they're going to scan me, think I will ask at my bloods appointment on the 30th. Best of luck and my fingers are crossed for you for tomorrow! Let us know how it goes? X
Hi Scaryfox, yes Im triple neg too. I was first diagnosed in Oct 08 and had WLE, 2.4cm tumour, grade 3 with vascular invasion and 8 nodes affected. While I was on chemo - 3 FEC and 3 tax, I developed another node in axilla which they took out. Had 20 rads and finished it all in July 09. Then in Oct 09 it recurred in my supraclavicular, ct scan showed 7 hotspots around that area. They werent sure it wasnt just reactive from all the treatment and decided to just keep a close eye and then the lumps just started to appear. It may be that I need to go onto another combi if this capecitabine doesnt work, will know on Thurs after I get results. My lumps feel different every day, some days Im elated as Im sure they have shrunk and the very next day it could be a whole different story and Im sure they've grown. I try to keep very positive about it all but get the odd mind talk which isnt helpful at all as I suddenly become more knowledgeable than the doctors and know far more than they ever could and scare the living daylights out of myself. A quick chat with the BCN puts it all back in perspective!! When will you have a scan or ultrasound to check the status of the lumps? x
Thanks smiley, glad I'm not the only one! It does seem to vary from day to day. I'm not sure it's working though as I'm on 4th cycle and definitely no shrinkage, slightly bigger if anything. My onc will probably want me to do carboplatin as a next option. You are triple negative also aren't you? Have you had any other chemos in combo or just the capecitabine? X
My lumps in neck hurt too, not always hurting sometimes just a long dull ache, but they are sensitive to touch, I thought it was maybe because I was always prodding them to see if they were any smaller. They never used to have any feeling before I started on this treatment so I was a bit worried. When I spoke to BCN she said it was a good sign but didnt elaborate on why! Onc didnt give me my 7th cycle on Thursday as I picked a bug of some sort up in America so on loads of antibiotics to try to sort me out. Had CT scan on Friday which will measure if they are shrinking and get results and hopefully more capecitabine on Thursday. Try not to worry, easier said than done I know x
Is it normal for lumps to start hurting on capecitabine? My neck lumps didn't hurt at first, but some days now really painful. I can't work out if they're just growing, or could it just mean the drug is doing something? Am halfway through my 4th cycle, oncologist doesn't seem in a hurry to see me - appt in a few weeks time.
Snoogle, thank goodness you have someone looking after your feet now. Its awful that they have had to get so bad before something has been done. I hope you see good results quickly.
Hi there, The hospice referred me to the podiatry service. I had a phone call this morning asking me to go in this afternoon. The podiatrist seemed aghast at the fact that I was previously advised just to soak my feet in salt water and rub moisturiser in my feet given the state of my nails. She cut away all the detached toenails and cut away all the dead skin on my feet, including the the area on the side of my foot where I have a large split in the skin. My big toes are now covered in dressing with an iodine patch next to the affected skin on the nail bed. I have tape holding the split in my skin together to help it heal now that fresh skin can touch fresh skin. I see her again next week when she hopes to deal with the state of the skin under my right big toe. All in the hope that my feet will be in decent enough condition for me to get back on the capecitabine when I see the oncologist next week. Sorry if this is too graphic, but if you do have problems with your feet it may be worth seeking a referral to your local podiatry service.
Thanks for that info from your chemo nurse, I'm not on Capecitabine but I have friends that are so I'll pass it on.
hi my wife has been having lots of skin rashes,dry skin. we have found that on its own Aqueus cream which she was given was of limited use so in desperation she mixed up aqueus with hydrocortisone cream and lavander oil and it seems to be helping alot
Good news Zippy, fingers crossed that the Letrozole does the job and you can have a nice long break from chemo.
Snoogle your poor feet, lets hope the cream works.
On my first day of Capecitabine today, mouth ulcers already appeared. Thankfully because of the thread I have ulcer gel and foot cream to help deal with side effects. Its been a very helpful read.
Best wishes to all.
Mixed results from latest ct scan, some shrinkage and some growth. Growth needs to be investigated so having another ct scan in 6 months. Feet are in such a state that onc is taking me off capecitabine for at least one cycle. Saw a complementary therapist at the local hospice this week and she made up a cream for me feet, so hoping that will help.
Best wishes to all,
Enjoy the lovely weekend.
Good for you, Zippy. Good luck with the Letrozole, hope it holds things in check for along time. Great timing too, holiday insurance should be cheaper now you are not on chemo.
All the best
WOOOOOHOOOOO!!! Im havin a break from capcitabane!!!! 🙂 never thought id ever be in this situation and i know it comes with big risks!!
In the last couple of months Ive had 3 tumours in my liver and 3 tumours in my lungs zapped by rfa. and now just hav 3 tumours less than 5mm in my lungs and the tumours in my spine are stable.
Ive now been advised to try letrazole (hormone drug) for 3 months and see if it will hold the cancer as the tumours left are small so hope in 3 months they wont grow too much if letrazole fails. its worth a try!! then i still can go bac on capcitabane as it was still working well as shrunk my tumours by over 50% and got rid of a lot of small nodules, if the tumours grow too quickly then i can have a blast of taxotere so there is a plan should the plan go wrong! (i hope not!)
its so fantastic i can come off capcitabane !! cant believe it!!
Hi Dawn and everyone,
I'm not on capecitabine, but I like to look at the posts to see what's being said etc. I thought I hadn't seen you recently and I haven't been on as I've been on a hol to Rhodes. However, I'm very sad to see that you're not posting because of Kay's death. It's all very sad for everyone to hear about her and Jayne but I think that they would be unhappy if they thought you were becoming depressed and not keeping in touch. I do hope that you feel better soon and that you will keep posting as I know you've been using this site for a long time and it's reassuring to everyone else (including me!) when we see messages from you. Take care of yourself and your lovely family and hoping to see you on here again soon. Have a great weekend.
Lotsa love to all, Dianne x x x
Thanks for that. I saw my gp this morning and she has prescribed hydrocortizone cream. Also I am waiting to find out if I can be referred to a chiropodits. The local hospice is making the referral.
Hi, I will be starting Capecitabine this Friday and would like to thank everyone for the information on this thread. I thought I would share some information I got from my Chemo chat appointment last week.
My named chemo nurse is a bit of a expert on Capecitabine and had been to Roche's Capecitabine conference last week. What she told me was reassuring regarding side effects and lowered doses of Capecitabine. Most people are started off on a the highest dose also this adjusted for height and weight. 50 percent of people will suffer significant side effects and need changes to the dose. The reason for this is the chemo effect is triggered by three enzymes in the stomach. The tablet then activates and becomes chemotherapy. Everyones enzyme reactions differ so some people will activate the chemo effect more then others and vis versa. The effect of the chemo is not lessened by lowering the dose. It is just as effective as the highest dose.
I hope that makes sense. The drug works at all doses as the dose needed is determined by how your body breaks down and reacts with the tablets. I hope that makes sense.
Sorry to hear u struggling. I use udderly smooth and also my neighbour is a chiropodist and gave me some FS3 cream (think it called that) and has worked. He also gave me foot emery type board and said should rub them down where my splits are to get rid of skin and it has worked quite well actually. I got some cotton socks and put loads of udderly smooth on every night, sometimes forget though.
Hope u are ok otherwise though. I am not posting much since Kay died, as so sad and upset. Didnt really think Kay would go before me.
Take care all
I am wondering if I will be kept on capecitabine as my right foot has got really bad. Lots of sores underneath. I am seeing my GP tomorrow for something else and see my Oncologist next week, so will discss with them.
Hi Lou, it's good to hear you too have found Capecitabine a longer term chemo. I'm only a few months ahead of you and hoping I have (we all have) much longer with these peachy tablets..x
PS now looking up cetraben and have just read some good reviews..thanks for the tip!
Just for your interest, BCC have a fact sheet on capecitabine, if anyone would like a copy or to read this on line just follow this
Sam, BCC Facilitator
I have been on this for my bone mets for nearly two years now for my bone mets, it's good to read that it can be working for quite some time. I started on 2300mg and had every side effect going but thought I just had to deal with it! Sick, runs, feet blistered like bubble wrap!
My dose is now 1600mg and has been for over a year. Two weeks on and a week off. I am generally ok but have to plaster feet with creams to stop cracking: Cetraben works well. I sometomes get a bonus week off if I am suffering as things do accumulate.
I hope you get a dose that suits you soon.
This forum is great for tips, when I started on this drug I got loads of advice.... such a great support
Keep smiling 🙂
Hi Scaryfox, I did take pyridoxine Vitamin B6 when I was on capecitabine although my Consultant Oncologist said there didn't seem to be much benefit in taking it in the info she had. But as I suffered badly at first I gave it a try, as anything was worth trying as hands and feet so sore. If you moisturise you feet DO NOT RUB IN any cream you have. It makes the cappileries bleed and that causes the soreness to worsen. I just plastered on the cream on my feet at night then put on cotton socks ( to save the bed linen and alllow the cream to be absorbed). If your feet become very uncomfortable the only thing that really made a huge difference was reducing the dose but you witll need to consult your doctor about this. My hands were not so sore. Once I came off the chemo my feet and hands got better. Good luck to you and Hayz with your treatment. After my first lot of treatment my tunmour markers actually halfed and this gave me the courage to continue on it. Good luck girls. Love Val
Hi again S.Fox..it sounds as though things are happening and hopefully this is a good sign as the lumps are not growing. I would see Onc so you can hopefully be reassured..x
Don't know if they're softening, just a bit sore if i press them? And the skin is red over the biggest one, hope it's not escaped into the skin as skin mets! Guess I should see my onc :-s
Hi scaryfox. The tablets don't seem to give such instant results as IV chemo so a softening of lumps after just 3 cycles sounds, to me, good news..x
Also wondered, am halfway through cycle 3 and my neck lumps have become quite tender ( they weren't before). Does this mean the xeloda is doing something? They don't appear to be either growing or shrinking just yet.
I'm due to start cycle 3 tomorrow and have also just been prescribed vitamin b6 (pyridoxine) for my sore hands. I know a few people here have mentioned taking this, wondering how effective is it? I'm slightly wary as read some posts on an American forum about people using it and then finding the capecitabine doesn't work. May be rubbish/coincidence but just wondered about others experiences or if anyone else had heard this?
Hi scaryfox, yes you're right the dose is based on your weight/height. It can also be lowered if you have any really troublesome side effects.
Hayz - in answer to your condom question - YES (use them)! For your husband's sake as well - mine had a nasty surprise 😉 Though he's fine now.
I am also on 2000mg twice a day - i thought they based this on my weight/height (more than diagnosis?)
I'm halfway through cycle 2 - thanks to everyone for the tips on this thread and it's great to hear the positive stories too. Best wishes to all x
oh also for other Capecitabeenies..yes me too, I've started to get white heads..the Boots No 7 concealer Nicky has mentioned is good!..the spots don't itch but appear on the jawline and hairline..they are not too bad, I can hide them.
Hope this chemo is working well for everyone..x
Hi Hayz, I'm on the same dose, I've been on this dose for 2 years now. You should find (for the majority of us) it takes a while for any side effects to kick in. This is my first chemo and after nearly five years of hormonal treatments with injections to halt my periods the injections were stopped as no-one, including me, thought my periods would return..ha..but they did. 😞 At first every 4 weeks but now they are less frequent. As the return of my periods have not caused my markers to rise I haven't resumed the injections..thought it would be less for the body to have to process. So yes I wouldn't throw all caution to the wind ;-)..have a lovely time away..x
Starting my cap this morning..EEK!
2000mgs now & 2000mgs in 12 hours....s'pose I'm starting on the mega dose to see how I cope....given that I'm going away with the BCC Girls next week I hope I have no probs!
I hope I don't offend or upset anyone with this, but I think you guys are the best people to ask anything....
Do you have to use condoms when you're on this chemo?? No one said anything to me yesterday, but it says it's advisable in the literature...advisable seems like a bit of a grey statement to me..I like when you get a straight do or don't otherwise it just sounds like it's an option!
Good luck, Hayz! Apart from my itchy scalp and spotty forehead (and that's been very recent), I haven't suffered any side effects from the chemo. Most people think I look quite well and I've slept like a baby. So you could be one of those lucky few who sail through treatment.
Wishing you all the best.
Good luck with the Capctabine. I've been on it full time since Feb 09 and managed not too badly.
Tiredness is a big issue so take it easy. Also found that my tummy would sometimes be upset and I get doses of the runs!(Nice)
Overall very doable - my hair is ok and strangely after years of bad skin my skin is now clear- I put it down to the fact that nothing could survive chemo!!
Ooooh......I finally start capecitabine tomorrow! Can't believe I'm excited about going back to chemo, but I just feel that my body's screaming out for help!
Please remind me of this excitement when I'm back in a few weeks moaning about the SE's! LOL
Thanks again to everyone who's posted on this thread...it's made the prospect of chemo for life a little less scary!
Hi Linda and Alison
re the spotty skin,
I know that mine is unrelated, but when I started taking Aromasin last Autumn I broke out in red skin and little yellow dot like spots, mainly all over my nose. My GP didn't think it was related but prescribed oxytetracycline and it cleared up! As soon as I stop taking it the spots reappear within a week! and I have been on them constantly now since Christmas, on a half dose and it seems to be keeping the spots at bay, as the spots really upset me.
I realise that you may not want to be introducing any more medication unecessarily but in my case I found this medication to really work.
Alternatively if you don't like the idea of further meds, Boots N0.7 do a fantastic concealer (in a lipstick like gold tube) (believe me I tried most cosmetics in a vain attempt to cover mine!) and it really does hide spotty areas, I have sometimes spread it all over like a foundation.
Regards Nicky xx
About itchy scalp and skin problem....ask your GP to give you NIZORAL 2% shampoo. I tried my husbands one ( he had a problem skin which was red and itchy after showering) and the shampoo worked for me. Good luck. I too only had Capecitabine not the combination one but had bowel problems throughout. But I did already suffer from IBS and it just made the symptoms worse. Now that I am off it things have returned to normal. Good luck girls. The symptoms can be irritating but if it is doing its job I feel it is certainly worth it. Take care. Love Val
Dear Linda, sorry that you are suffering from some side effects. I have just been having Capecitabine on its own and shouldn't complain really as apart from the itchy head and spotty skin (like you, I always have had a good complexion) I haven't had any other side effects. I've tried massaging my head with some almond oil and some rosemary essential oil and I've also bought some organic shampoo and conditioner for sensitive scalps to see if that has any effect. To avoid the itchy feeling I need to wash my hair every day.
Anyway, thanks for replying and wishing you well.
I am only on my first cycle of Cap/Lab but I too have a really itchy head which is driving me nuts. Also, after a lifetime of clear skin, I have come out in spots and whiteheads all over my nose, chin and between my eyebrows, this too itches like crazy.
I have also had mouth ulcers which were quickly zapped with 'Iglu'. I have also had diarrhoea, mild nausea, and a couple of days of tiredness. I wonder if I will experience this every cycle or whether it is just because it's the first cycle?
I keep studying my skin mets, hoping to see signs of improvement, but none so far, I guess it's a bit too soon to expect anything yet.
Thankd Janet, I have phoned Hazel on her mobile to apologise. Luckily she knows me well.....will think before I write in future. Thank you