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
Moijan
Hi Cape ladies, plenty of time on my hands now so just having a quick look through some of the other issues. I did Cape for 18 months altogether and did have dire hands and feet but had Udderley Cream (un-perfumed type)recommended to me which was brilliant. Slather it on twice a day & wear socks/gloves over it at night (cotton ones). As someone has said it’s quite expensive but goes a long way, I buy it still as a moisturiser from Amazon (they also sell it in bike shops for cyclists nether regions!). Cape was for me one of the kinder drugs so try & get on top of the notorious hands & feet issues if you can as it can be a very effective drug.
Good luck, Samrtie x
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
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
Hi Cashmore,
I’ve never had any problems with sleep while on Cape. However, you mention that your mum is on steroids which do certainly cause sleeplessness. It is worth asking your doctor if this could be the problem. Best wishes xxx
Thank you waffles, we are seeing a nurse from our local hospice today so I will ask her about it x
Ellie…is your vinoralbine tablet or iv.? Just wondered as awaiting new decisions myself…take care good luck Sharon.x
Thanks elliexxsharon
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
Moijan
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.
Moijanxx
Hi Ellie,
I’m sorry that Cape hasn’t worked for you. I really hope that vinorelbine does the trick for you with few side effects. Best wishes. xxx
Hi
Just wanted to introduce myself. I started Cape yesterday after being diagnosed with secondary bone cancer in March 2015. I was on Taxol initially, but that stopped working after 10 months and small lesions were detected in my liver last month. Still feel in a bit of a daze, but tips on here have helped. I have stocked up on the Udderley cream and Immodium. Not sure how long it takes side effects to kick in. Will continue to read thread for more tips. I can’t believe there are so many tablets to take.
Hi moijan, funny you should mention the swollen ankles because mum has been getting swollen feet and ankles, the nurse from the hospice came yesterday and showed her some excersises to do, She’s really not been feeling well at all these last few days, she’s so tired and not eating and her breathing is getting bad, she said to me last night that she’s worried that her feeling bad is the start of the end for her, it was horrible hearing her say that because she’s normally quite a possitive person, I told her that I’m pretty sure its the chemo making her feel like this, I just hope I’m right as we know they can’t cure her cancer, just try to slow it down, so I hope it isn’t the start yet, since my dad died five years ago I have spent an lot of time with mum, and I can’t imagine what its going to be like without her x
Hi George,
I started Cape in early December last year and am now on my 13th cycle.
I try to stick to taking Cape tablets around 12 hours apart as it helps me remember to take them but sometimes I end up taking them an hour or two earlier or later. My doctors just told me to take them morning and evening. I think the firm guidlines are that you must have an 8 hour gap between the two doses and take them within 30 minutes of food. Yes, you are right we do have to take loads of tablets. But I suppose we can’t complain too much as where would we be without them. Hope all goes well for you on Cape. xxx
Cashore, sorry your mum isn’t feeling so good. Is she sleeping any better? Best wishes xxx
Hi George,
Looked over my last post and I meant to say the doses must always be MORE than 8 hours apart. I think most ladies seem to stick to the 12 hour apart schedule but you don’t need to beat yourself up over it if you deviate from this now and again. xxx
Thank you for all your replies, I will let mum know that the breathlessness and tiredness is very likely to be the chemo, hopefully it will put her mind at rest, she had a full night sleep Wednesday night, not sure yet about last night, the nurse told her to make sure she takes painkillers if her legs are hurting her, but mums a nightmare when it comes to painkillers, she does not like taking them x
Hi Carolann,
I find I’m quite sleepy in the afternoon. I almost nod off at work sometimes. I can get very tired around 7 or 8 pm but generally get a second wind after that. I find that any anti sickness pills I’m on (except Zofran) make it much worse. If I keep active it isn’t so bad. It feels like sleepiness rather than fatigue.
Another problem I’ve had recently is being wakened by leg cramps. Has only happened a few times but my legs are still sore from it happening yesterday morning. Anyone else getting this. I think I’ll mention to onc as I’ve read it can mean low calcium or potassium or just be a caused by unknown harmless reasons. Anyone else had same problems? Best wishes to all my peachy pals. xxx
Hello ladies
Gatecrashing again …try a glass of tonic water before bedtime …it helps me with cramps and aches.
Hugs xx
Ps …I’m not a cape lady.
Yum waffles
Gin and tonic with ice and a slice …sounds very tempting from my old life though.
Bye bye …back to bone Mets thread now .
Xxx
Hi Helen,
Goodness, you and Barton are making me realise that my cramps are not that bad.
I remember being prescribed diazepam as a muscle relaxant then I had back problems about 20 years ago. So that imust be why it would work with cramps I would think. I keep some diazepam in the house for calming me down when I’m going for results so might try one if the cramps get bad enough. Thanks for advice. xxx