Hi Cashmore, just wanted to say, if your mum isnt able to get much excercise, just keep an eye out for sore or swollen ankles/legs whilst oncape.. i got tired and also nauseous so took quite large doses of antisickness drugs. I got a dvt and later read that both cape and the antisickness drug could predispose to one...I suppose im saying, even if she is tired...your mum should try to move regularly, not flake out for hours on end, like I did.
i noticed my swollen ankle and mentioned it to the onc, but he thought nothing of it. It was only a week or so later that the whole tib& fib part of the leg(e.g, below the knee) swelled up..that I was referred for an ultrasound and they found three dvts. I now inject myself daily with heparin, probably for life, as having cancer at all is a risk factor for blood clots.
i do wish .i had been more active.
Hi Ej81 I too went on Vinorelbine oral after the cape stopped workng. My cycle too was three weekly, eg Day 1. day 8 and week off. It didnt work for me really...i was on it for about 5 months before the tumour began to grow again. During this time my sleep pattern was awful! When I was taken off itand given Eribulin, it started to improve. I have found it useful to count my breaths, slow my breathing right down and repeat something over and over in my mind, a bit like a mantra. Until the brain gets bored.
Vinorelbine capsules are made of a jelly coating which dissolves in heat, so I used to rush home to put both doses in the fridge...they say not to take with warm or hot drinks in case the contents get out before reaching the stomach! I used to be quite paranoid about examining the capsules in case they were leaking, fill my mouth with cold water and throw the capsule into my mouth and swallow! I found out that the I/v version can leak through vein walls and burn the vessels, so its good to have a healthy respect for the capsule contents. Also, not every hospital uses the oral version, so Iwas quite grateful. i had very few side effects, other than the sleep. It is interesting we are on the same path, I suspect that the oncs have a route thate is common to all.
are you oestrogen positive? Lobular cancer,? Best of luck with it...hope it works for you
That sounds exhausting, EJ. Hope everyone enjoyed your "barbecue" cake! I'm sure they did.
Ah thank you. No need to worry. I've just been busy. We had a family get together for my father in law's 70th and then my husband's band were playing a local mini festival so I took the boy along to hear them. He lasted till gone 10pm before running out of steam then I ended up sat in our van in the dark while he slept! We were all worn out the next day!
So sorry to hear that Cape has failed you, EJ. Wishing you all the best for your new treatment. Keep in touch and let us know how you get on. I was worried about you when you were being so quiet on the Forum, EJ.
Hugs and good wishes. Barton.x
It's tablets. Apparently it is normally a four week cycle but I'm doing day 1, day 8 and then a break week. Good luck to you too xxx
Thank you waffles, we are seeing a nurse from our local hospice today so I will ask her about it x
Thank you EJ and Nicky for your replies, mum actually had nine hours sleep last night with a couple of wee breaks in between, hopefully she will start to sleep a bit better now, its horrible seeing her so tired and down, she's normally really upbeat about it all, I think if she had a normal sleep pattern it would make all the differance. When she's tired she doesn't feel like eating, which worries me because on the iv chemos she hardly ate and lost a load of weight which made her really weak and she ended up in hospital, the onc put her on permanant steroids which has helped with her eating, as I said before she hasn't had any other side effects yet so I suppose she's quite lucky really. Thanks again x
I found whilst on Capecitabine that I struggled the first few cycles but my body seemed to cope better with the chemo after that and I generally felt OK. Although,as has been said by EJ, it is tablets they are still strong drugs so it's not surprising our bodies are affected so much by them. I had scans similar timings to when I had been on IV chemo and also when I'd been on hormone treatment although the first scan may be after 4 cycles rather thN 3 as cape can take a bit longer to kick in. Also, as EJ says, speak to your Mums chemo unit/nurses they should be able to help with side effects or arrange a blood test, although one of these is done before each cycle as you know.
As to sleeping maybe it's anxiety? I found I slept really well whilst on cape, but don't when I'm on hormone treatments. The newness to your Mums situation maybe isn't helping her as she adjusts so possibly she could speak to her GP about some low strength sleeping tablets?
Hope she starts feeling a bit more strength and less tired soon.
I'm sorry to hear your mum is struggling. I have found this chemo more tiring than I thought I would. Although it is tablets it is still chemo. I also don't sleep particularly well at the moment. I try and stay in bed and read until I'm tired enough to drop back off. For me it has been normal to have z scan after 3 cycles of a new treatmentbut all oncs do it slightly differently though. Make sure that your mum's onc knows all about the tiredness etc as they may be able to tweak the dose. Also it may be worth giving the chemo ward a ring. Mine always say if in doubt to get in touch. They can run bloods etc and give advice to help cope. She could be anaemic as it is one of the risks.
I hope things improve for you and your mum soon. I know someone on here said the first few cycles can be the worst. xxx
Hi cape ladies, hope everyone is doing ok. I just wanted to ask a couple of questions, mum is halfway through her second cycle of cape, she hasn't had any problems with her hands and feet yet, and not feeling sick or had a dodgy belly, but she is absolutely worn out, she can't walk anywhere anymore, she has to be taken everywhere in a wheel chair, she has problems with her legs anyway, she's walked with sticks for the last 19 years after an accident, she said she feels exhausted, she is also having real trouble sleeping, since Monday she's only had one full nights sleep, she says she sees every hour of the night. Has anyone else had this trouble and if so do you have any tips to help her to sleep. Also she's looking quite pale and wondered if she maybe a bit anemic. How soon after starting cape is she likely to have a scan, nothing has been mentioned yet, I don't know how long it takes to take affect, I just hope it makes a differance x
Wow! EJ, yes, please post a photo of a barbecue cake (?!)
Hope your hands and feet improve soon. As my cycles have gone on, I have found my hands take longervto recover - they seem to be at their best towards the end of the first week back on the pills! I supoose there is a delay in the effects. Annoying, though, as I know I expect things to improve immediately after stopping the little blighters:-S!
Hugs to everyone. Barton.x
Thanks Smarties. I think I'll give udderly a try. I've been given another week off. Not sure how this will impact on my holiday but relieved to have the break right now. Have little splits in one hand that only appeared today despite it being the end of my week off and still have someangry looking blisters on my feet that are quite sore.
At least I have an onc appointment next week anyway so will hopefully have scan results and can make a better decision about what to do next. In the meantime I have been prescribed various bits tontry and handle the SEs including some steroid cream my palms and knuckles are still inflamed.
Feeling better today and quite pleased with myself as I've spent the morning sorting out my father in law's 70th birthday cake which I think looks quite good. Might post a picture on the private forum later once it's finished off. It'sa bit random as its a barbecue cake!
Sorry you are having such a rough time with side effects. Hope they can put the dose down a bit more for you and that that helps. Fingers crossed. Best wishes. xxx
I'm normally pretty good at staying positive and keeping going - just feel frustrated as I thought I'd improve more quickly on the week off. I will make sure I go in with a full list of my side effects and I'm going to see if they can reduce it this time round even if they want to put it up again later.
I am trying to drink lots but I'm better at it on some days than others. Will keep plugging away though! Moijan thanks for all the tips. I moisturise lots but it's good to know what to look out for.
Oh, EJ, so sorry to read you are feeling so down and awful! We all get that way ocassionally, but it's so horrible at the time, isn't it?
You really are suffering with your hands and feet - get as much rest as you can. And moisturise - inside (with lots of liquids) and outside.
I did suffer from terrible tiredness during my first rounds of Cape, and breathlessness. The only thing that helped was rest. Sometimes, when in town etc, I just needed 2 or 3 minutes sitting down, and that recharged me for a little while. It's a miserable feeling though.
I do hope you feel better soon.
Perhaps, instead of an extra week off (which would upset your holiday plans) for this next cycle, your Onc could reduce your dose again a liitle. Worthbasking, anyway.
Hugs, and thinking of you.
Hello Caffy, don't worry about "gatecrashing", we are all willing to help another Cape Crusader, whatever has caused to need for Capecitabine!
I had Cape for a total of 10 cycles last half of 2014 and firstcquarter of 2015, then a break. Now back on it, and not having the same problem, but the first 10 cycles, I had a couple of itchy rashes. One on one leg, which seemed to go on it's own, then a nasty one on the back of each hand. I was worried, thinking it was skin mets at the time, but my Onc assured me it wasn't, that it was just a rash some people get from Cape. I was told to just moisturise as much as possible, and it did help a bit, but the rash didn't actually go until I had the long break for the rest of 2015. Not much help to your poor husband, I know, - sorry! Whatever, he should still mention it to his Onc.
Wishing you both all the best. Please keep posting and let us know how he gets on.
Just one more morsel, I found and still do on my current chemo that certain foods can precipitate diarrhoea, i had chilli concarne the other night and thought? Oh dear, but sometimes chokky does that too( sorry Caroline!) its all test and see. I think drinking water ++ helps...they say 2+ litres per day, dont they?
makes sense with red fingers and tose as if we havent enough fluids there, the skin has less resilience towards cracks and stuff.
love to you
I just skipped back to see my original post re Cape.
I was put on to a markedly reduced dose of Cape about two cycles in; during my first cycle, my life was miserable due to diarhoea and vomiting...when my dose was reduced, I also was told to do 2 weeks on and two off...and I was worried it might not work, but it did work well for almost two years.
I think they usually start you on the max dose for your weight and then see how you go, sometimes you start on a reduced dose for some reason..(.im just fininshed my first cycle of Eribulin, but they gave me a reduced dose as my liver function tests results were high..she said, we know that side effects will be worse, unless we reduce the dose.) obviously they want you to be able to tolerate the drug you are on so that you can continue.
I also had red fingers and feet and the fingers got small cracks in them.. I get cellulitis so am extra careful about that. i got hold of some 'udderley smooth' which is a little expensive, but excellent stuff. However, there are lots of good creams out there...best if they arent too perfumed, look out for parabens,to exclude these if you can. I currently just use e45 but I havent currently got cracks etc.
i think on reflection, my time on cape gave me more freedom...Im now tied down to i/v chemo which is much more intrusive. There arent that many 'tablet' chemos around, I wish I had done more travelling and other exciting things whilst I was on Cape, now im tied to hospital visits , cycles of 3 weeks. So make the most of it ehilst it is working if you can.
The other thing is, and it took me a while to realise this...if you have a query/concern about your treatment, you can ask to email your onc's secretary and she will pass on urgent data to him/her, so if you are struggling with an unbearable situation, as in all these s/e you could try that...or contact a n/spec if you happen to have one, I try not to do either too often because although they are always very nice, I end up feeling a nuisance!
i also think Carolyn's advice ( chocolate) is a great idea, unfortunately, I cant just now, due to reflux!
Hope that helps.
love and hugs
Thanks Carolyn, I'm just having a grumpy day!!
I can't help but wonder if that accidentally higher dose mucked me up last time but I'll wait and see what they say tomorrow. No onc appointment till next week so I think I'll have to wait for scan results. I'm hoping they might be able to reduce the dose a bit more tomorrow though as I've only dropped from 2150 to 2000 so could probably go down a little bit more.
You're right I'vehad almost constant chemo for the last 2 years so perhaps it's all taking its toll.
The boy has preschool all day tomorrow so I should get a bit of rest. I'm being a lazy mummy and letting him watch back to back Thunderbirdsright now!!!
Might have to go and have cake later to cheer myself up/ boost my energy!
Maybe one of the creams with urea to help with the itching? I bought euricin from Amazon and it says on the bottle it can help with itcvvhy skin conditions. Or even something like camomile lotion maybe?
Anyone else finding this really tough?. I'm due to better my fourth cycle tomorrow and I'm dreadingit! My mouth is still sore. My hands aren't burning now but they're still tender even though the skin is really thick and I've lost the feeling in the ends of my fingers. My feet have stopped burning too but I still have blisters which aren't healing and they are peeling again. On top of that I am just feeling exhausted, I just want to go back to bed most days.
I will tell them all this tomorrow but I'm equally worried that if they give me an extra week off I'll then end up on the peachy pills on our holiday. I had been hoping to finish this next cycle the Wednesday before and have a two week break before starting the next one. I don't even know if it's working yet. I'm hoping I feel rubbish due to a slight upset stomach I had a few days ago as I didn't feel so wiped out last time.
Sorry for having a grump I'm just finding it hard to keep going at the moment and I've got a busy weekend coming up thatI should be looking forward to!
Hi Ladies, I've just started reading through this thread with interest, but as there's 109 pages it may take me some time!!
I'm gatecrashing really, but hope you may still help me. I was diagnosed with lobular BC last year (no spread) had Mx then FecT chemo and so far I am doing OK. However, my husband has Bowel cancer with spread to his liver and lungs and has recently been but on Capecitabine - hence my post on here. I guess there is probably a forum for bowel cancer sufferers somewhere but this one has been so helpful to me I thought id try here first.
He is coping pretty well with the drugs so far, first time he had ulcers on his lips so they delayed by a week and reduced the dose. This time he has got a blotchy red rash on the back of his hands and arms which he says is itchy and the bottom of his feet feel 'bruised' when he walks. I keep reminding (ie nagging) him to moisterise his hands/feet/whole body well but can anyone recommend anything for the itching?
He has just finished the second 14 days of tablets and we go back to the oncology unit next Monday but he is not keen on a further reduction or delay in treatment.
Hoping everyone is having a good week without too many side effects xxx
Hope you have a lovely, relaxing holiday with you family. It certainly sounds like you need a break from Cape to get your hands back to normal. Hope they feel better soon xxx
Hello from France Peachy Warriors
Sorry I have not been able to post sooner but life is hectic t the moment. 20th I saw onc and I asked if I could take a break from cape for 3 weeks she agreed it would be a good idea. My hands are starting to heal and I am enjoying being with the grandchildren and of cause my son and his wife. Weather almost like England with rain but sun much warmer
Waffle I admire you it seems cape is doing ok for you long may it continue. Ellie my hands go very stiff and that is when I find they crack. Thank goodness I am getting relief now. I have tried your savlon remedy Barton but as soon as they seem better the crack opens up again at last they are healing. I think i have had far too much chemo drugs without a rest.
Welcome to Midway I hope you and your wife find plenty of help from my fellow cape friends this thread is full of useful information so please look back on past posts.
Love and ((((((hugs)))))) to all xxx
Hello Waffles, sorry, not a side effect I have had - too fond of food! However, like EJ, I do not like breakfast (unless it's a full English, cooked by someone else!) - never have bothered since I was a teenager. I find it hard to eat with the pills in the morning, and have resorted to chocolate digestive biscuits (3) or Jaffa Cakes (4) in order to take them, but as I'm now getting fed-up of those choices, I will have to find something else! Suggestions, anyone?
On a side note, I haven't had the error message problem (yet!), EJ, but as I type, my screen keeps freezing then the words suddenly catch up with my typing. Most disconcerting!
Hello midway, welcome, but sorry your wife has had to join us on the peachy pills. The best advice I can give you re side effects is to read back over all the posts on this thread. There are some very wise people on here.
Hope your wife tolerates the pills well and has few side effects.
Greetings from San Diego. My wife has III rectal cancer and Xeloda is the recommended course. She is 76 and frail due to a perfororated colon years ago. Could someone summarize the 2016 thinking on Xeloda's anticipated side effects/how to mitigate them? We have to choose between Xeloda and "the pump" approach. Thank you so much.
Sorry you are having problems with your hands and feet. As regards cake I must admit I can still eat that and biscuits too. No problems on that score. But my diet is still balanced as I haven't gone off fruit. 😀 xxx
Anyone else having trouble posting? I keep being told to correct t errors and try again only to find it worked the first time.
I haven't particularly gone off any foods but I find it hard to eat breakfast in the mornings and I'm generally not as hungry. Not ideal as need to eat to take the pills!
Finished my third cycle on Wednesday and I'm still waiting for my hands and feet to ease up. My hands are so tight I can't quite straighten my fingers - attractive claw hands! Definitely going to push for something to help with this when I go to get the next batch. Think my eucerin/ solid cocoa butter combo is helping though as my hands and feet aren't peeling any more but I still get blisters really easily. Stubbed my toe with trainers on the other day and instantly got a big blister.
I hope it hasn't put you off cake waffles! I am on a dedicated cake eating regime after the onc said she was concerned I'dlost a bit of weight! Not exactly suggested by the hospital but if they don't want me losing any more...!
Love to all,
Marirose, sorry to read your hands and feet are so bad. Have you tried the Savlon and plasters trick that I do? It really helps my hands (no good for feet, I'm afraid, as the plasters just won't stick!). I put the Savlon and plasters on overnight, for several nights in a row. Things gradually improve, and I find even the day after the first night things are a little better.
Glad you are getting help and advice from other sources though - perhaps a combination of all the remedies will sort you out!
EJ, hope you had a lovely time at the beach - which one did you go to?
Thankyou Ellie and Barton
I am trying to organise the packing what I need and what OH needs. Thank goodness the weather is giving me chance to get washing done. I am finding it hard to iron with my hands being sore so I got John to help me he is very good at helping but he tends to want to do things his own way and I get so frustrated because he doesn't listen.
I may ask the onc (if she is still there because she will be 30 weeks pregnant now) if I can take these three weeks off to give my hands chance to heal. I go to a local cancer support group of which i am the only one with SBC it is run by a retired practise nurse she said it looked like an allergic reaction and asked if my feet were the same she adviced me to get some antihistamines and hydrocortisone cream. The pharmacy were very good and as they knew me and they knew I was on lots of medication gave me laratadine tablets and Hc45 cream and although I have only taken them for three days I can see a change in the colour of my hands they are starting to look normal but the splits hurt and keep opening up
My MS is also playing up with the heat my legs are giving way on me and I have not sat in the sun. It has been quite hot here today and the weather in France is hotter than here. We spend alot of time inside with the shutters on the windows playing with the grandchildren .but the suncream is factor 50 when we venture out. I am afraid the sun is no-longer for sunbathing in now.
Well I don't go until Thursday but so much to do.
Love and ((((hugs)))) to you all xxx
Bought factor 50 today. Melting in this heat and it's making my hands terribly sore. Off tto the beach in a few minutes for a swim to cool off! xxx
Remember the sun screen, EJ and Marirose! Cape makes us more prone to catchong the sun.
Waffles if I get good scan results and stay in the Cape crusadersI am investing in some really good trainers and probably some walkers sandals too! I managed to have a lovely long afternoon tea with a good friend yesterday so that was a good long rest.
Marirose have a wonderful holiday. We're off to France next month. I love it. I'm hoping it won't be too hot but I plan on being in and out of the sea!
Hello Marirose, just writing to wish you a wonderful holiday. Just try to forget the bad and enjoy the good.
Hugs and best wishes. Barton.x
Well done Ellie
I hope you take waffle and Bartons advice and let your men run around you for a change. Roll on next Thursday as soon as I get the peachy soldiers I'm off to see my grandchildren in France and tomorrow I see the other three at Wetherby before they jet of to Malta for the 6 week holiday. Lucky them daughter-in-law has family there her mother was Maltese trust my 2 son's to marry girls with foreign parents.
Love and (((((hugs))))) to all peachy crusaders xxx
Glad you are OK, EJ. Walking there and back must have been torture for you! Please rest as much as possible this weekend, although I know that must be difficult with such a young son! Get hubby to run after him instead! Bathe your feet in cool water (not icy), and then gently pat dry - don't rub.
Hugs to everyone. Barton.x