Happy New Year to everyone.
im on my second round of cape day 8 but have felt really rubbish the last few days, I’m not sure what to do seeing onc on the 10th Jan after second round completed and scan after 3rd. I’m on 2150 twice a day plus morphine, antisickness, and vitamins.Side effects I’ve expereinced are sore cracked thumbs and feet, even with applying creams, sore mouth and poor appetite and nausea.
I feel so fed up as if I stand up to do anything I feel very wobbly, and unwell. I’m more or less housebound as I don’t ever seem to feel well enough to go out. Energy is nil!i look appalling, I looked at photos taken over Christmas and couldn’t believe what I looked like. My skin, particularly my face is a horrible shade of grey and yellow!
Any advice on what to do would help, I see on here a lot of ladies continue on cape for years, but I’m not sure I could stay on it as I feel it is dominating my life, I feel so fed up and worn out I don’t know what to do.
We have no secondary BC nurse in our area but I have a good palliative care nurse. The chemo nurses are brill too but never really sure when to ring them, as I don’t want to end up in hospital.
sorry for the long post, but felt I just need some friendly advice.
Happy New Year to everyone. Hoping for the best for all of us and continued good results from Cape
Life certainly is different Carolyn. I don’t begrudge anyone having a good time but I am off to bed soon and hoping that the fireworks don’t wake me up at midnight, if I wake up it takes me ages to get back to sleep, but then a lazy day tomorrow so can catch up then
Remade and Carolyn I do agree
Had some family photos taken over Christmss and I look awful. These up to date phones with the cameras etc are good technology but too good at times. My eldest granddaughters were snapping away. Then they showed me the photos - yikes. Hope they don’t show them to anybody else
Hope your biopsy results are good Ramada, when will you get results?
hello all, had a biopsy in neck yesterday to see if things had changed. What was worse though was going down in the lift afterwards and having that huge mirror which you can't look away from, already pale and shaky i saw how terrible i looked. Can't they change the lighting in lifts? Every blemish shows lol
just thought i'd share this.
Hi again Carolyn. I have just finished my tablets for my sixth cycle, so starting my 7th cycle..hopefully ..next Friday. My fingers are a little dry but the udderly helps a lot. I also suffer from nausea but usually just one occasional anti nausea pill sees it off
do you make your own rice pudding or do you buy ready made? It may be worth a try for me, better than taking the pills
I take 2000 x 2 each day and so far have not needed a reduction in the dose
hope everyone one had a good Christmas.... ours was quite busy but lovely to see everyone together...had a rest day today and looking forward to another one tomorrow
take care everyone
Hello again everyone. I have just finished the first week of my sixth cycle
And am pleased to say that my TMs continue to fall and my SEs aren’t too bad.
Had a bit of a scare when they ordered a brain scan. Have been having double vision on one side for a few months, saw optician who found nothing. Started to get sore more around my eye than the actual eye so saw GP who referred me to optometrist who ordered a brain scan. Received results yesterday - nothing sinister just a weakening of a muscle, quite common in short sighted people.
I am very relieved - even when being told that my TMs etc were falling still got very anxious.
So pleased to hear your results Carolyn and also Stillhere and everyone else.
Hoping that you all have a good Christmas and a peaceful new year. I was dx just before Christmas in 2012 never thought that I would see 7 more...and still counting
Stay well, take care and raise a glass to our NHS
Woohoo Carolyn on your fab scan results. You can enjoy Christmas without that cloud of scanxiety hanging over you 😘
Hi to all other Cape crusaders, wishing you all great results from the peachy pills and a happy Christmas .
Ps great news from you as well Stillhere xx
So pleased for you, Carolyn! Stable is great so have a lovely Christmas, when else can we overindulge just a bit? I'm not medical but have read lots of forums, Cape seems to be effective at lower doses and my hospital does 1 week on/ 1 off. They say they get the same result.
Just had my 3 monthly scan result, I'm stable Mabel too, phew! My trial has worked since April 2016 so I'm feeling blessed x
Carolyn that’s such good news, I hope you are pleased . I had results today too, all stable and he said my tumour markers were 63, does anyone Else know their markers? I was really hoping that the cape was kicking but and shrinking everything but I know I should be pleased with stable. The onc did say that this chemo didn’t cross the blood/brain barrier, I thought it did but must have read it wrong.
Hope me everyone is doing well, you are all so amazing x
Hello Carolyn, oh what a nuisance for you, hopefully a short break will stop this. Good luck today with your bloods.
Hello Wee Vee, i am on day 10 of my first cycle and have no side effects yet, i was told that if i got diarrhoea to inform the hospital but to take immodium and they would only stop the treatment if i had severe diarrhoea even taking immodium. i tend to lean more towards the constation side of things normally but we'll see. they can give you cream for sore hands and feet, avoid wearing socks as much as you can.
i do hope this helps and good luck to you. i feel this treatment is already working for me and it is fair to say i have had a long line of failures so i intend to try anything rather than stop. you have only 3 days to go of this cycle. i am off it for 2 weeks instead of 1 because of Christmas and the onc said that wouldn't make any difference. o xxx
Hi, I am on day 11 of my first cycle of capecitabne. All was good until yesterday and now suddenly all the side effects have kicked in. I woke up last night with diarrhoea which has now settled, have sore hands and mouth ulcers. Anyone else had a similar experience? My oncologist told me to phone the chemo helpline if I had severe diarrhoea and they would probably advise me to stop but instead I have reduced the dose for the last few days to see if that works. Just wondering if anyone else has had a similar experience?
Hi Carolyn. my daughter has sent me some Macmillan/ Greene king recipes for Christmas for people who have difficulty with eating or swallowing, they look really scrummy, i will be getting hubby onto that job pretty soon. I have to physically hold open one side of my mouth to put food in but then it,s fine. Good luck with your scan results, it's not the time of year to have that sort of worry.
i often read that ladies have problems with needles, bloods taken etc, , which is what I had for several years, however earlier this year I had a port a cath fitted, its brilliant and I don’t get problems at all.
A lot of hospitals don’t offer the option unless you asked, which I did and they arranged to have fitted quite quick. (I only learnt about it from a fellow chemotherapy patient)
Contrast for scans go in, bloods out and chemo in. Once used a small plaster on and off I go.
over the summer I as able to swim etc as all that’s visible is a small bump on my chest and no external tubes.
The last straw for me was when they had to take bloods from my feet, very painful and slow and bruises horrendous.
im sorry if you already know about this but I didn’t so thought might be worth a mention here and help someone else having similar problems that I had.
good health to all. X
Morning all, hope you are all coping.
Carolyn, thanks for your reply i thought that might be the case with the brain. They are not talking about wbr yet but they are going to biopsy the neck lump because i have to physically hold my bottom lip down on the left in order to eat. Whole apples are out as i'm sure you've found. i think i'll have to ask my daughter to mash my food up as she does for the little ones lol. how are your twins by the way.
hugs Ramade x
I’m a week in on first round of peachy pills and apart from feeling slightly nauseous in the morning, I’ve not been too bad. Liver pain has started to ease off as oramorph kicks in. Nurse said to maintain pain relief not try too get on top of it once too bad, so at the moment that’s what I’m trying to do.
still waiting for biopsy result.
Is this normal, whatever is normal, start to cape. I’m not sure what to expect!
good luck to all and stay well. X
Hi all,hope everyone is still coping and having some success with the peachy pills(Carolyn thankyou)
Cape is going ok for me so far after first few days. i have cancer in neck,brain,brachial plexus and bones.
my Face is numb all down left side and i can't open my mouth very wide so eating is difficult. i have also lost balance so can't be let out on my own. So i'm wondering does anyone know how long cape takes to work if indeed is it working on me. Trying to stay positive.
hugs to eceryone
Yes, I think I had them for a while but never had a scan on brain until they thought they saw something on my spine and then did an MRI.
I had whole brain radiotherapy, It was a very easy procedure and very quick but I have never felt so low in my life and I really didn't know how to cope for a few weeks afterwards but thankfully with a very supportive family I came through. I just hope that cape can help, I wasn't aware until reading your post that there are chemos that can reach the brain ! I really should ask more questions but to be honest I am so scared I just want to get out as soon as I can. I had the WBR in February this year. xx
Carolyn, you have such a lovely sense of humour with all you have to cope with :). I did have brain rads and I must admit to "going along with it" and not putting much thought into the implications. Looking back I should probably been more questioning. Still its done now, I just wanted them to make it go away !! I hope you are having a nice day and managing lots of on line shopping treats for yourself and family .
Hugs and positive thoughts as we wait our results xx
Hi Carolyn, it sounds like we were scan twins last night ! I still panick after a scan even after 3 years of it. I will now be a hopeless case until results day . I really need to keep it together so I don’t ruin Christmas for my family, I just worry about getting stocking presents muddled up and wrong labels on parcels. I suppose it’s keeping my mind busy . I hope you don’t mind me asking but do you get many side effects from your brain mets ? X
Caroline my scan is at 6 as well. I will be sending you positive vibes. I really think a scan results ban should be enforced in December!, I always get December flaky brain without this added stress. Good luck tomorrow x
Hi Cape Ladies,
So glad to hear that on a whole you are all managing well on cape and getting good results and good luck Carolyn for your scan on the 8th.
I am now on my 6th round of cape which I have found very easy to tolerate and none of the side effects that I was expecting. I have a scan tomorrow, which is the first one since starting on this chemo.
My worry that is keeping me awake at the minute is that I have just found a few lumps in my neck, I am sure that they haven't always been there and have just recently developed. Do you think this will be an indication that the Cape is not working on other mets ? The constant worrying is really getting me down. If the cancer has spread to neck lymp glands/nodes can they be treated from anyones experience ?
Big hugs to everyone waiting for results and feeling poorly xx