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
After my initial melt down that having spent the whole Summer on Docetaxel for a splattering of liver mets (onc’s words!) only to find by 1st October liver Mets had spread extensively through my liver, I am at last calming down! ( well a bit anyway). I also requested a Chang ego oncologist as I’d been with same one since primary in 2005.
for the last couple of months I’ve felt so lethargic and unwell, on so many pills and potions I haven’t managed to do much but today I’ve turned the corner.
LOTS OF POSITIVE thoughts from my lovely family and friends as I join n the CAPE CRUSADE! so this morning ive popped my first “peachy pills” as Carolyn calls them.
im hoping for not too many side effects but I seem to be having quite a biggish dose. 2150g x 2 a day? I weigh about 10 stone. So not sure if that’s why!
Im also waiting for the results of liver biopsy from last Thursday. Very surprisingly I found this quite painless! A night in hospital to recover but no discomfort from site.
Please any advice help on cape would be appreciated, Ive been booked for 3 cycles then scan, so hopeing that it works well for me.
Good luck to all other cape crusaders. I’m going to be busy today wrapping all those internet xmas presents that it’s all to easy to buy when your sat at home!
Fairies and elves seem to have decorated my house already!!
hi Carolyn, i agree with you about the grandchilden they really take your mind off...
i had no joy with e/e either and with everything else failing they are suggesting cape so i was glad to find this thread thanks to our late friend Moijan.
i hope you are feeling better now i missed you when you were off line.
hugs Ramade x
Hi George and Caroline,
Thanks for your kind comments and support it's nice on here because you all get it and it makes me feel less isolated.
Good to hear you all planning some fun in your lives ladies without that we would feel even more sad. I am hoping to be well enough to go to my grandaughters school concerts I just love those events. They are 3 1/2 and 5 years old, both attending school in the Welsh Medium so are bilingual and correct my poor Welsh. Boo Hoo!. Best of all they sing in both English and Welsh it is so lovely to hear the kids all singing away in the choirs.
In the meantime I hope you are all getting as much fun as you can.
Be well and keep smiling.
Hugs to all
Just catching up on your posts as I have been cape-unwell-bed. I'm sure you will be okay on a reduced dose Carolyn52. My oncologist told me this week it was not dose dependant for good results so I hope you can remain on it for a' long spell' and get the benifits.
I went for my 3rd cycle on Monday but when my oncologist saw me she decided to suspended me for 2 weeks of cape and delay my Denusomab too. I will be reviewed then and we will decide how I will move forward. Which is good because I have options and my onc has more stuff in her arsenal if cape is not for me. Yippee!
On the positive side the drugs had already started to reduce the mets in only 2 cycles, so for you girls who are uncertain it works - it works great. So keep taking the peachy pills.
My next plan is to join the Christmas Shopping with the others in this group as soon as I can, just in case the shops run out of goodies.
Happy shopping to you all and by the way remember you need to treat yourselves too, I always feel better after Retail Therapy.
Hugs to all
sorry to hear that your bloods are low. I do know of a lady whose doseage was lowered twice because of early problems when she started Cape. She was fine for several months and then they raised her dose because she put on weight, so you could still have a long spell on the pills.
Was your dosage lowered by much ?
I am full of cold at the moment....getting better though.....so taking the rest and spoiling myself a bit
Hi everyone...so good to see such a busy thread.
went to pick up my next cycle of tablets yesterday....which is my fourth. I am very pleased to say that my TMs have gone down again by nearly half,,this is the second reduction in six weeks. The nurse was nearly as pleased as I was.
hope everyone else has such good results and that you are as well as you can be
Hi Everyone, had my review today and the Onc sent me for a chest xray as I am so breathless all the time. Fortunately he said the xray was unremarkable but is giving me an extra week off to see if I feel better during the coming week and also I requested extra "time off" as I'm going to an "Elvis" show in Coventry on Sat night at Grosvenor Casino. I think when go next Friday for my review and next prescription the Onc will reduce my dosage and then maybe I'll feel a bit better and have a bit more energy.
Thanks to all of you who responded to my previous posts...its a real booster to hear from you and hearing all your positive attitudes. When I was first diagnosed I wouldn't plan for anything thinking its not worth it as I probably won't be here. But now I have changed my mindset as I hear of so many long term survivors. In my area we meet every month, organised and held at the Hospital and lots of the girls there had their diagnosis years ago and are still going strong !
Hope you all have a good weekend,
Love Carolyn xxx