Hi Tomboy,
It sounds like the side effects are hitting you reallyhardI I think a little while off work until you get your dosage worked out would be best if that’s feasible. ((((hugs))))xxx
Also yes it is based on height and weight.i can’t handle the first dose of cape so they adjusted it and I was fine…then later down the line I lost weight and it was reduced again…im on different meds now but had 13 months on cape…sharonx
Hi ladies. Thank you all so much for your kind words and advice. I’m currently en-route home from my work conference which I just about managed to survive! I ordered a risotto at dinner last night so I could eat with just a fork and my left hand (my right hand is wrecked!) I also had to leave extra time to do everything due to hobbling at snails pace and issues with getting dressed, unbuttoning trousers to go to the toilet etc. Now I have the joy of battling through the London Underground to get home. The things we have to endure,eh? I’m seeing my onc tomorrow so I’ll definitely ask about a dose reduction. I’m really struggling in my current state. Good luck to everyone having scans, appointments this week. Big love to my fellow “cape crusaders” xxx
Hello Tomboy
I am so sorry to hear you are having a bad time the hands and feet syndrome I have had bad times myself the feet brought on by standing too long and not resting the feet I have not had too much trouble with them but my big toes have suffered they have got swollen. But the hands have been very very red and this week my free week I have the biggest split at the crease of my thumb. I do use a walking stick and I think the pressure on the stick has helped cause it.
I have been to the hospital today and saw the BN who asked how I was getting on I showed her my split thumb and she went to look for some plasters or dressings that would help and be secure while still moisturising. My onc came in and Jenny the BN told her about my split when the onc saw how red my hands were she said she was reducing my dose by 10% I asked her not to because I have had such good results with this treatment but she insisted and said it should work just as good. My feet are ok but the hands are what she was concerned about.
So your onc will proberly reduce your dose anyway but I should ask if you could have it reduced. You have had some good advice from our other friends so I will not go over that again.
Sending you lots of ((((((((((hugs))))))))))))) xxx
Hi fellow crusaders,
Tomboy and Marirose, as Nicky mentioned she was on an 80% cape dose for 18 months and it was still effective I also read that the late Marif known as ‘The Xeloda Queen’ who had liver and bone mets and was on cape for 8 1/2 years was on a very low dose ( I think as low as 50%) for much of that time. So obviously, the dosing is really flexible.
I’m very lucky in that although I’ve got very dry, thickened skin on my hands and feet I have no pain or cracking. However, I have a new side effect which is a bit bizarre. My lips and the front of my mouth have become incredibly sensitive to heat (temperature and spiciness) and saltiness. I have no ulcers or skin breaks though. I had a mild curry tonight and I had to wait till it was stone cold and even then I could only eat half of it. I’m having the same problems with hot drinks which is evem more annoying as I love a cup of tea. Has anyone else had similar issues. If so, how did you deal with it?
Best wishes xxx
Hello crusader Waffles
My lips have become sensitive not quite as bad as yours sound I can still eat hot curry’s but I try to be careful because I know what it is like to have a sore mouth from the last tab chemo. I am getting trouble with my eyes though they seem to smart at times apparently another se.
Before starting cape i read the posts from the beginning and admire the ladies that have gone before us and i thank Nicky for keeping a watch over us. I really miss Belinda she was a truely inspirational lady who was there for us all and I could not find her silver plasters in Wilko’s either.
Love and (((hugs))) to all peachy crusaders xxx
Thanks Marirose,
The wonderful thing about the forum is that wise advice of Belinda and other ladies like her is still helping us now and will continue to to help others in the future . xxx
Hi Barton,
Since I’ve worked out it is a side effect I’m adapting my diet. As long as I eat blandish food and lukewarm drinks I can cope. I actually like bland food, so no real problem there, but luke warm tea isn’t that pleasant.
I’ll definitely ask about Diflam though when I see onc next. Although, not 100% convinced Cape is still working as over the last three weeks I’ve become quite achy with lots of niggly pains. It isn’t too dreadful but it’s definitely an increase in pain conpared to the two months. It’s been four cycles since my last scan so I might ask for an other one soon. We’ll see what onc says next week.
Best wishes xxx
Hi Waffles and other crusaders
Another mouthwash on prescription that I swear by is Gelclair it heals the mouth and gums. It is used alot on EE. I do hope your mouth soon settles down it is so depressing when these niggly se interfere with normal life. I would make sure you ask about a CT Scan normally I have one every 4th cycle and hopefully you will be like me when I thought the cape was not working.
Love and (((((hugs))))) to all Peachy Warriors xxx
Hi Marirose,
Thanks for advice. Last time I was scanned ( 4 cycles ago) and found out everything was stable I was totally gobsmacked as I had been in quite a bit of pain then too. I really don’t know what to think this time. as the pain got quite a bit better for a couple od cycles and now it has got worse again over the last 3 weeks. xxx
Just a little update from me. I’ve been given a 2 week break after my first cycle of cape to allow my hands and feet to heal. My bloods were fine except one liver enzyme has risen slightly. Onc didn’t seem to worry too much and said it would be too early to know if cape was working or not. I go back to clinic in a fortnight with a view to restarting on a reduced dose (if my SE’s have calmed down enough) In light of the above, I’ve decided to decline the job offer in Europe. I’m worried the blood test shows that the cancer is continuing to party in my liver in spite of the peachy warriors…
Happy Friday everyone. I hope you all have lovely weekends planned. I might hobble to the cinema to watch the new Damian Lewis film- yum! Eye candy… ?
Hello Peachy warriors
I hope you are all well and looking forward to the weekend.
Dear Tomboy so sorry you are suffering I hope the 2 weeks will help and the reduced dosage works apparently some ladies have stayed on the cape at reduced dose for years. So maybe if it works for you as Barton says you may still be able to take your European job. Don’t give up hope.
Waffles I do hope your pains start to ease soon you really are going through it with pain does it keep you awake at night? Also your mouth must make you feel pretty low right now. I do hope you get some relief from it. Pineapple is very good for mouth ulcers it is a disinfectant and does help when it is frozen so maybe it may help your sore mouth even tinned pineapple is good. But if I get sores I always use a gel called Gengigel from boots it works wonders.
Barton I hope you are well. My BN wanted me to go back onto Udderly for my hands she said it has no added additives so I have tried it again and it does seem a little better but 2 days is not long to say whether it will work. I do use Savlon under my plasters though and it does look better.
Love and ((((hugs)))) to all xxx
Thanks Barton. I hate scans and all the worry that goes with it but if Cape isn’t working it’s better to find out now rather than later. xxx
Hello Peachy crusaders how are you all today
I hope your mouth is still better Waffles are you still working?
Tomboy I hope you are feeling better on your first week off cape maybe a reduced dose will work better for you.
EJ thankyou for your tip about the vaseline around the eye area my OH was having trouble with an itchy eyebrow he tried it and it worked oh and it helped my eye too. It’s always good to hear these tips.
Well my hands have been terrible OH wanted me to ring the hospital but I said no I want to sort them out myself. The splits healed quick with Barton’s remedy of savlon and plasters thankyou Barton. I now have dry skin which I think udderly is curing I sent for some hand cream with Eura in as well as a tub. Although my hands look scaley correction left hand it does seem to be doing something. The hands have been bright red but are now settling down and the fingers so stiff feeling which are now getting more flexable The feet have been great but dry skin started to form on the left foot why the left side I’ve always been strange. Thats me maybe the lower dose is starting to work I hope so. I am at the end of my first week on the 9th cycle.
Well lots of love and ((((hugs)))) to you all xxx
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Hello Peachy cape crusaders
I hope you are all still ok it seems a while since we had a chat. I have not felt too good with myself this cycle no 9 my hands got worse it was my left hand and foot that suffered most and Barton i am right handed too.My fingers felt so stiff and the colour was almost purple at times on my hands then they went flakey. Thank goodness the cracks disappeared at the beginning but the hands throbbed at night and felt like I had fallen down on a gritty road when I was a child. I took comfort soaking them in cold water then covering them in udderly and vaseline. They have now started to settle down I am on my first free night of my free week and i am hoping tthey will go back to normal before next week. My feet had been ok until last week when they left started to skin and then the right. thankfully they soon went back to normal I continued to use my Aldi cream and vaseline at night and I wear my bamboo socks and gloves.
Do I tell the onc next week how bad it has been. Remember she noticed my red hands and reduced the dose by 10% I really do want this treatment to work because it’s the first time I have had a reduction. I just hope they continue to repair I may be coming off soon anyway because I may be having ECT
Well love and ((((hugs to you all xxx
Morning Cape crusaders
My hands have driven me up the wall this morning its like having hot aches I could do with one of those stress balls to get my fingers going.
Ellie while my mouth is ok I do get reactions with one tooth from time to time it is sensitive and I need to use sensodyne it all started from my first chemo in 1997 and every time I start a new chemo it always plays up. So it could be something like that I hope it sorts it out for you too.
Love and ((((hugs)))) to all xxx
Hi peachy cape crusaders
Ellie what a great site you have found thankyou I was very interested. I hope your feet settle down I found myself reading the old post they have good ideas and remedies.
One of those was vitamin B6 Nicky’s post I took my BCC booklet on Capecitabine and tried to see a doctor there was only one and I do not like her as a doctor at all because when I had my ulcerated skin mets I went to ask if I could have help with the dressings. She shot off out of the room came back and sent me off to the nurse. When I asked the nurse why should she be so brusk the nurse said she didn’t like wounds. Any way she gave me the tablets after reading the book and computer and said I will give you 10mg once a day uuurrrgh she is hopeless I think I may ask my onc about them.
Barton you have been a big help on here and I am so pleased you are still doing well long may it last.
Waffles how are you is your pain any easier and are the se getting at you
Well I am trying to watch Fiona’s healthy foods so I will say Love and ((((((hugs)))))) to you all xxx
Hi Marirose,
Sorry to hear your hands are sore. I hope it calms down on your week off. I’m very lucky in that my hands and feet are just very dry but not split. Feet look a bit to weird to wear sandles though which is a pain in this weather.
I ‘m not sure what’s going on with me otherwise. After about 4 weeks of increased pain, things have gone back to normal for the last 8 days… I now take double the dose of long acting morphine but I don’t think that can account for the lack of pain now as when it was bad a few weeks ago I was taking 4 extra doses of morphine in addition to my long acting morphine. So I’ m actually on a lower dose now. I’ve had a bone scan and will get CT scan next week and results week after that. Whatever the result, I’m enjoying just having mild pain…
On the matter of sensitive teeth, I’ve got a very sensitive crown at the back of my mouth which rwally only is sore when I’m brushing my teeth. I assumed it was denosamab causing that will say to onc next time I see her.
Best wishes to all my peachy friends xxx
hello everyone - sorry for the long gap; I’ve been busy, but just caught up and seen that some of you are having a hard time, others less so. Sounds like you reached the work right decision, Tomboy81, and I hope the ses are more tolerable as you adjust dose/frequency.
I’ve just had an extra week’s break from Cape (we were away - again!) and am due back on this coming Wednesday. I had a lot more trouble with my guts/stomach/bowels this cycle (no 11) and haven’t noticed much on this thread about that. I am also a bit worried that I may have incipient ascites, which could also be upsetting my intestines. I thought I was just a bit bloated from the upset stomach, but I’m not convinced. And ascites could of course mean progression. I see the oncs on Wednesday.
I have been using loperamide, which is OK at the time and very soothing, but I can’t work out the right amount to take - if I have too much I feel that the normal processes aren’t happening and I also tend to get more stomach pain, which is horrible. I have never been someone who had stomach troubles so I guess I have a low tolerance for it. I suppose improving this is a question of trial and error and nobody will have a magic formula.
Back to the feet for a moment (I haven’t had anything like the same problem with hands that others describe). I have continued with all sorts of urea cream - my GP prescribes Hydromol, which works quite well for me though it doesn’t have the nice cooling effect of some of the others. When the plantar palmar syndrome is at its height I get a sort of red line round my foot below which everything is hot and bothered, and above looks pretty much normal. My right foot is always worse than the left - I assume I just walk harder on it.- and my toenails are pretty ropey and not a pretty sight. I’ve tried sweet almond oil which is nice (also for fingernails) but I am not convinced by it. If I know I am to be doing a lot of walking I put on protective dressings. The GP nurse prescribed Allevyn and Aquacel padded things with silicon sticky surfaces. They’re big (7.5 and 8 cm squares) but I cut them about a bit to fit, and stick down any loose edges with micropore. They really work well for me as prophylaxis, except they aren’t waterproof and I can’t get them to stay on my little toes…I also wear thick sports socks (economy packs of 3 from M&S, two white and one black) which are definitely not stylish but they work.
Two last things to try - slather on the cream and then wrap your feet up in cling film. For the whole night if you can stand it (you need socks on top) or failing that for an hour or so each day. You can do hands too, using those gloves all the nurses have. It has helped me a lot, as has sitting with my feet in lukewarm mildly salt water.
Good luck everyone and let’s hope the pink soldiers are doing their stuff…