Xeloda / Capecitabine - Your Top Tips, please?

[2catlady]

Hi,Tink,welcome to cap gang. I've got some of the gel soles. It's relief for a little bit then it's back to burning feet. They are calming down now,as weren't as burning last night ,all to start again on Friday ,lol .when I start cap again.
Huge hugs and hope your SEs are okay for you,Helen xxxx

[Tinkerbelle]

Hi Helen,

I have been reading through the beginning of this thread as I have joined the Cape gang (second cylcle starts tomorrow).

Sorry you're having problems with burning feet.  I think I read, either on this thread or somewhere else, about buying gel insoles and putting them in the freezer to cool (not too long) and then wearing them inside thin cotton socks.

http://www.ebay.co.uk/bhp/womens-gel-insoles

Don't know if these would be any good.  Hope you get some relief soon.

Tink x

[2catlady]

Hi,Geordie,I'm going to get one. This is driving me mad. Honestly hubby doesn't have to scape car in morning I'll just put feet on window xx

[2catlady]

Thank you ladies. I have a fan Belinda,but poor hubby is complaining I have no heating on in bedroom and windows wide open,he wakes up shivering and I'm so burning hot. Hoping they will settle as it's three days into week off.
Huge hot feet hugs,Helen xxxx

[geordiex]

how about a cold hot water bottle would that help at all xx

[Barton]

Helen, just read your post on bones thread and find you aren't feeling better at all - so sorry to read that! Please be careful and take it very easy. Barton.x

[Barton]

Hello Helen, I'm afraid I don't have an answer for you, but can totally sympathise - I know exactly how that feels. I'm afraid all I do is put them out from under the covers about half a million times each night. Hope you are feeling a bit better now. Hugs to all the Cap gang. Barton.x

[belinda]

I used to get the same Helen, how about a fan at the bottom of bed, I used to sleep with feet on top of bed clothes. X

[2catlady]

Hi,cap gang,any advice how to cool feet at night. As soon as I get into bed at night they are burning hot ,feel like they're on fire. I wake up a few times in night as so hot and have to put cream on them I 've put soooo much moisturiser on,stuck them out of bed,put cold wet face cloth on them. They are never like this during day only at night,very odd and uncomfortable .
Hope everyone is coping with SEs,huge hugs,Helen xxxx

[Elily]

A week or so ago I asked for recommendations for creams for plantar palmar. I have been using Udderly and topped it with Vaseline. But I then remembered Waitrose Baby Bottom Butter which is made of olive oil, vanilla and camomile and costs only a little more than Vaseline. I've had good results from this and managed to get through my 4th cycle of current treatment without blisters. So, if you shop in Waitrose do try it - cheap, smells nice and has no nasties in it!

[stresshead]

Pam, so pleased to hear your news.!!

Jo, dont worry about crying..my counselor is used to me bawling every time.i once said to her.." how do you cope with everyones woes and crying all the time" she replied..." at least at the end of the day i can walk away from it". How right she is...i just wish we all could.

xx

[Barton]

Hello Cap gang! Well, I'm back from the chemo unit with my lastest lot of pills (Cycle 8), after my 9 week break. I have a lower dose this time (3600mg daily instead of 4000mg), so hoping the se's will be slightly less. Hugs to all the Cap gang, and I'm thinking of all who have had bad news recently. Barton.x

[Porkie]

Great news Pam, it gives me inspiration when I hear stories like yours especially at the moment because I am going on new chemo Vinorelbine nexr week following progression. If this does not work xeloda is likely tk be next to try.xx

[Mitch23]

Hi all
Pam that's great news. I bumped up the inspirational stories thread the other day but there seems to be a lack of response. As bev says it may be worth putting your story on there to inspire others!

Helen - thanks for the hugs x

Having rubbish day again. It really is a blow when there's progression! Hope everyone is as well as they can be!
Hugs jo

[2catlady]

Hi,Kaye,I know what you mean. When my neuts are low I panic because I've missed a week of chemo !God this dammed disease so messes with you head. It will be your cold that put them down as your using the neuts to fight cold. Mine go down when I have an infection.
It still amazes me how our bodies cope with being filled with poison every day and cancer.
Hope you feel better soon,cold are bad enough when we are fit,m
Huge hugs,Helen xxxx

[Bevlaar]

Hi Pam...have you put your post on the Inspiring Stories thread? I know there are quite a few ladies who would be thrilled to read it 😀 xxxxx

[bertie1]

Neuts I meant to say xx

[bertie1]

That's great news Pam it's always good to hear success stories,it is also working for me but couldn't start my 7th cycle as nuts are low .
Helen I know I shouldn't worry but can't help it sometimes this is what this crappy disease does to us.I am full of cold so this could be why they are low hope it clears by next Wednesday ,never thought I'd be looking forward to Chemo .hope everyone is doing ok.
Huge hugs to all
Kaye xxx

[Stillhere]

That's great news Pam!! I'm so cheered by success stories on Cape, hoping it works for me for 3 years as well. Finding I'm getting more anxious the longer I'm on it, thinking the next scan will show progression....smacked wrists for being negative!! On cat lady's naughty step as I type!! Hugs to everyone not feeling good today xxxxxxooooxxxx

[2catlady]

Oh,pam,that's fantastic news xxxxx just what I needed to here today,as really struggling at moment.
Long,long,long,may you continue to keep you stable,massive hugs,Helen xxxxxx

[Barton]

Helo, Pam - what wonderful news - so reassuring! That must be a huge weight off your mind. My fingers are firmly crossed for you, too. Long may it continue. Hugs, Barton.x

[pam01]

Hi I thought i would post my good news to share with those ladies suffering with S/es at the moment and to say with a bit of luck it is worth it!! so repeat spinal MRI and CT scan last week.(my first CT scan for 3 years). the CT scan shows  all clear....the MRI no progression in mets in multiple vertebra with collapsed T4. Ive been very fortunate to have 3 years of no progression on capecitabine and 4 years since secondary diagnosis. My fingers are now very tightly crossed that this may continue!!!

[2catlady]

Hi,Kaye,I've had to put mine back because of low neuts. I usually happens when I have an infection. Try not to worry they'll be okay in a few days xxxxxx hugs,Helen xxxxx

[bertie1]

Hi all hope we,re all doing ok haven't posted for a couple of days as full of cold which I can't seem to shift.They wouldn't give me my Cape yesterday because my neutrophils are low hope they pick up by next week as I worry when I'm off it too long .hope you all have a good day .
Take care all
Kaye xx

[2catlady]

Hi,jo,how are you doing today? I often cry through sessions. I did when I got progression to liver and lungs. So your not alone. This disease is @@@@ and so cruel.
Sending you massive hugs,Helen xxxxxx

[Mitch23]

Hi bev
Thank you for your advise and kind words. What a journey this is ! I hope that your next treatment works too. I went to see my counsellor today and cried all the way through the session! Poor woman having to listen to that! Anyway I suppose the only plus point is it hasn't spread anywhere else at this point. I'll give the cold cap a go and see what it's like.
Much love jo x

[Bevlaar]

Jo...so sorry youre feeling so down but its natural...crying is good. We all need a release. I was the same this time last week when onc told me i now had spread to my other lung. Its soul destroying truly
especially when you hear of other ladies responding well to treatment. But i was assured by the chemo sister on the ward that they would find a treatment that worked for me and im sure that'll be the case for you too....just hang in there like me love.
I had the coldcap with docetaxol and i did lose about 60% of my hair ....didnt go patchy just very thin like baby hair. But that was after the 1st dose. I didnt lose any after the following 3 doses. And it actually started growing back during that time.
I had the Paxman scalp cooling system and it was quite comfortable to wear...so give it a go. Some ladies dont lose any hair with it.
Love and lots of luck....bev xxxxx

[Mitch23]

Hi cw17 thanks fir your support. I've cried buckets today. Just can't take it all in. Start taxol next week and having cold cap. Has anyone used the cold cap? What is it like and does it actually work? Any tips appreciated !
Love jo x

[stresshead]

Hi sjamitch, please dont beat yourself up for feeling as you do. I too am a 'cup half empty' person and i find it really difficult. We all feel like crumbling, especially at 'results' time but only we know how it really feels.  was so sorry to hear your news but i'm sure the next thing will be the one that works for you. Lots of hugs.x

[Mitch23]

Hi Barton

Thank you for your kind words. You ladies do seem to be strong! I feel as if I'm crumbling and I need to pull myself together for my family.
Helen - thanks for the hugs! Gladly received. How are you feeling ? I've just started anti-biotics for a virus. There is some nasty stuff flying around at the mo. It hits hard when your immunity is low.
Hope you feel better soon
Jo xx

[2catlady]

Barton xxxxx

[Barton]

Hello again, Jo, I can understand it being a hard day for you! Please don't feel you have to apologise for being upset - I'm sure all of us here can say that we have, at one time or another, had a "rant"! I have to admit that I too am a pessimist! (sorry for all ths exclamation marks). It was a good thing that your Onc said - please try to take it in. Hugs. Barton.x. Ps: Helen - glad to hear you are feeling a little better, although you are a naughty girl for not ringing the hospital - there is such a thing as being too "stiff upper lip" about things! However I won't make you sit on the naughty step (that would be too mean for the state you have been in)!   Hugs to both, and all the rest of the Cap gang.

[2catlady]

Oh,jo ,sorry results were not what you hoped for. But your onc sounds very positive which is a great help.hoping next chem will work wonders for you.
Massive hugs,we are all here for you,Helen xxxxx

[Mitch23]

hi barton

thanks for your reply. Its been a tough day. start taxol next week. just gotta keep going! i hope your scan is good.  its interesting that my onc said "its not anywhere as bad as what you think it is' he was very positive. unfortunately im a cup half empty kinda girl and find it difficult to see anything positive at all!

Sorry about the rant!  

Best wishes to all 

jo xxx

[Barton]

Hello, Jo, so sorry to hear of your results!  I can only imagine how you feel at the moment, but I wish you all the best.  I hope the Taxol works for you, as I know it has worked for lots of ladies on this site.  Please read the relevant threads, and all the positive posts -  there are lots.  By the time I start my next lot of tablets on Thursday, I will have had an 8 week break.  They have booked a CT Scan for me on 11th Feb, and I am already nervous about what it will show - hoping the little uggers haven't been having a party while I have been off the Cap!  Love and hugs, Barton.x

[Mitch23]

Omg. They've grown. Have to move onto taxol. Anybody had good results with this? Am panicking big style.
Jo x

[2catlady]

Oh,jo,we all know how you are feeling. It's an awful time waiting or getting results and yes being scared is all part of this awful journey we are all on .I haven't any tips to help sorry
We are all here for you xxxxx
Huge hugs,Helen xxxxxxx

[Mitch23]

Hi all,
Haven't posted for a bit but have been reading your posts!
Am off to the marsden tomorrow for scan results - YIKES!!!! - am feeling sick at the thought of it! Does anyone have any tips on surviving their scan result appt? Sometimes I feel like I'm going to collapse I'm soooo scared! It just seems to get harder every time. Anyway hope everyone is well
Love jo x

[Barton]

Hello Cw, I can't understand why your Onc says you can't stay on Cap indefinitely - my Onc has said I can and I believe one of our other dear ladies on here was on it for 9 years (someone please correct me if I'm wrong!). Do you have other health concerns (not asking for details - just wondering) that may be worrying your Onc? I can completely understand why you are scared (I almost went into panic mode when the first suggestion he made was that I stay off Cap with just occasional scans as backup until things changed). Hoping he changes his mind for you! Perhaps he is expecting you to be NED at the end of the 10 cycles? Hoping svan results go well for you. Hugs, Barton.x

[stresshead]

Helen, so sorry tio hear you are feeling unwell again. I'm sur its a bug or virus but like the others have said, please get yourself checked. I was feeling really rough a few weeks ago..persistent cough, breathlessness, aches and pains. I went to my GP who prescribed antibiotocs but when the chemo dept found out they went mad that i hadnt rang them sraight away.

Barton, so pleased to hear you were given the choice to stay on cap. My Onc is adamant i have to drop them after 10 cycles (on 9th at moment) and i'm relly scared. havent had any interim scans but he says they are working when i have my appointment with him every 3 weeks. Hopefully will be reviewd after my scans at end of treatment.

[Porkie]

Helen - so sorry that you are feeling poorly again. I do hope you are feeling a little better now but if not I echo what the other ladies have said that if I were feeling as unwell I would call my chemo unit tonight - so they can check you over. I have called in the past and the hospital has always been very helpful and said I did the right thing in calling.xx

[Barton]

Thanks Bev. I'm wishing Cap and the other chemo had worked for you but I'm sure that the next one will. Good luck. Barton.x

[Bevlaar]

Barton...so pleased about the Cap. Must be lovely to be told you can have a break but nice to have the choice too of staying on if u want. xxxx

[Bevlaar]

Sorry youre not well again helen..youre going through a heck of a time of it lately with your back. Hope you get some relief soon. Dont worry about moaning lovely lady...feel the same myself this week.
breathlessness so bad last 2 days i need to carry my inhaler up the stairs with me to inhale when i get to the top! Cant breathe otherwise. You take care xxxx

[Barton]

Hello Cap gang - just got home from the hospital after Onc appointment. Have finished 7 week rest period from Cap. Saw the Registrar this time. Wad offered two choices - stay off Cap and be regularly monitored and then go back on when necessary, or go back on Cap. I opted to go back on Cap (the thought of doing nothing frankly terrifies me!), but at a lower dose of 3600mg instead of the 4000mg I was on for 7 cycles. It will mean taking more pills to make up the dose though because they only come in 500 & 150mg I believe. I couldn't start them today because, apparently, they have to order them in, so I get an extra week off! Yay! I will have another CT scan soon though (in the next 2 or 3 wks), presumably to see if the break has done any damage. Hugs to all the Cap gang and a special gentle one for Helen. Barton.x

[bertie1]

Hi Helen sorry you're feeling poorly again,it might be agood idea to give your hospital a ring if yor pain doesn't ease and you still feel unwell.
Huge hugs
Kaye xx

[Barton]

Hello Helen, sorry to hear you have been poorly again! As the others have said, you need to be checked out. The literature I wad given when starting Cap (and a few yrs ago when I had IV chemo) was that you should ring the hospital if you felt unwell even if you didn't have a temperature. I think shivering etc counts as feeling unwell! Please ring them! Hope you feel better soon and lose all that nasty pain! Hugs. Barton.x

[2catlady]

Thank you ladies xxxx I'll see how I am tomorrow,if still dodgy I'll give them a ring. It could be my ear virus that I went to see GP about as ears are still very painful.
Huge hugs,Helen xxxxxxx

[geordiex]

Helen you need to go to the ward they'll check you out I have been a few times and they're great give them a call they tell you to if your feeling unwell x

[Stillhere]

Helen, just to say that I hope you feel a bit better today. Your back sounds very painful but it could just be a lurgy if you were shivering. Cap does make you breathless as well. Lots of hugs and good wishes xxxx