Hello marli, sorry you have had to join us but welcome to the Cape Crusaders. Good luck for tomorrow.
You have done the right thing in reading through the other posts on here, but there are so many I know it is difficult.
You are also right to be prepared with questions to ask - please try and have someone with you to make notes and listen to stuff you might not hear if you are stressed (totally understandable).
The main thing to be aware of is the big D (diarrhoea), although some people have the opposite problem (not me). Some people also suffer from nausea. The hospital should give you pills to ward off those problems. Also, sore hands and feet. Please be prepared with plenty of moisturing creams.
I wish you good luck - please keep in touch and let us know how you get on. Ask us any questions you like.
Hello Ladies. Hope you don't mind me joining you as I start Capecitabine tomorrow and am rather nervous.
I have been reading through some of the earlier posts as well as the more recent ones and have found out quite a lot of useful information. It has bee more than 3 months since dx with secondaries in liver and peritoneum (abdomen) so have had a long time to dwell on it.
To cap it all because I have had chemo before they have not given me the introduction. I am, however going to ask as many questions as I can.
Any questions I should ask and any tips please. Marli x
Was reading your last post and thinking 'yes, its hard to make plans' its a rough road we are all on - but its a good idea to put in a few plans for small things to look forward to xx
Racer, I agree with the other ladies, try and get a second opinion. I have challenged my oncologist on numerous occasions and have also been referred to the Marsden on several occasions. It may be that Cape isn't benefitting you as much as maybe something else can and a major teaching/research hospital will have far more tricks up their sleeve than a local hospital will. Hope you continue to feel a bit better and get out and about a bit more as you seem to have been doing.
Racer, did you get a second opinion? (Will pm you)
you sound as if you want to fight this....its important that you are true to yourself...the oncs WILL tell it like they see it....but it feels pretty damning and set in stone when they speak like that....I wonder if they realise?
my gut feeling is...get a second opinion at somewhere you trust...
I know what you mean by emotional, racer! 9 times out of 10 Onc appointments I end up bawling at the slightest thing - luckily my sister can remain calm and finish my questions for me! It's always good to take someone with you if you can. I'm glad you weren't alone at your last appointment.
Hello racer, lovely to hear from you! I'm afraid I can't help with advice about disagreeing with your Onc - luckily, I have never (yet, anyway) been in that situation. However, I still think that as it is your body they are talking about, you ought to have much more of a say in what they do to/for you. I would enlist the help of your obviously very supportive husband, and make your wishes known. It is probably much harder to do than for me to say, and obviously do it as politely and calmly as possible.
Sorry, probably have been of no help whatsoever! Hugs and best wishes to you and your family.
hello Cape Cockerels!
just wanted to say.'Lucky man' is on tonight...such a lovely escapist programme!
hope Easter is treating you all wellxx
Been off line for a while, through fear, as much as anything else as last chemo failed and had increasing pain in liver area so wasn't confident Taxotere would work. Luckily had good results so big sigh of relief for a couple of months and a bit of peace till the next scan. .Liver pain appears to have been trapped wind caused by IBS and stress. Pain now gone amazingly!! I can imagine anything.
Really great to hear your news. Love Waffles xxx
Thanks for comments ladies, I find my nails are much hard and thicker than before which I put down to the adcal pills. I think I do need to see a podiatrist - am hoping I'll get if free rather than having to pay privately!
happy Easter weekend cape crusaders!
Hi Moijan, Sorry haven't been on for a while been getting into the Inspire forum and there's only so much cancer talk that I can do ha ha. I've got a second cold where I haven't been "sick" for years but I look at it positively thinking that perhaps my immune system has finally recognised my cancer cells but can't cope with dealing with them as well as a cold bug. Haven't been to my O2 therapy for a couple of weeks cos of infections but I will probably go back when well again. But overall doing ok. Hugs to all of those who are newly diagnosed and those struggling at the moment xx
Hi Cape crusaders
When I was on Cape in 2013/14 there were quite a few comments about pain with toenails and it was always the big toe nail! I was having problems with one of mine and realised it seems to be one of those extra little side effects that these wonderful treatments give us! So, definitely not uncommon. My big toenails in particular became very thick and brittle whilst on Cape which has continued since coming off it whereas my fingernails are paper thin and like little razor blades - I have to be careful on not accidentally slicing myself! They are not great condition although I'm trying to add a treatment oil at night to help them and I have to keep them very short or they will flake/bend/break.
Oh well, if it's doing its job it's a small price to pay for this chemo I suppose.
Hello London, and all - re nails - my finger nails on Cape are paper thin and bendy (have to keep them really short), but they grow realy fast and the cuticles too. Also, I have hairs (luckily very fine and pale!) growing on the backs of my two index fingers! Bizarre! At least I don't have hair on the palms of my hands - yet! Luckily I have never had trouble with my toe nails from chemo, and not on Cape either.
Well done Helen and Lindylou for your Cape cycles. In answer to your question, Helen, I have had a couple of 6-8 week breaks from Cape and stayed stable. However, when I had a longer break (due to sore hands and severe breathlessness), and was put on Exemestane, I had quite a lot of progression and thats when it went to my bones. Apparently I am only weakly hormonal now which is why the Exemestane didn't hold it at bay. That was a break of about 8-9 months, though. Hope that answers your question.
Congratulations on your break, London, however short, and glad you enjoyed your riding. Can't help with the flakey skin on your fingertips, though, apart from lots of cream which is what you are already doing. I'm getting the same problem. I do put a blob of Doublebase moisturiser (the hospital gave me a couple of tubes ages ago) on the sore fingers and put plasters on over night. That helps a little.
Hugs to all. Barton.x
I have been taking cape since September 2016 when I was diagnosed with skin mets only a few weeks after finishing all my treatment for primary breast cancer. I find it ok, very achey sometimes, fatigue etc but can't work out if that is the cape,herceptin or anastrazole? Difficult isn't it?
Well HelenAquarius I just had to reply - saw a podiatrist last week and she had a right go at my big toe nail.
That night the throbbing kept me awake so kept daubing savlon on it and now just about able to walk in shoes properly again! I see this podiatrist about every six weeks. Not sure I want to it she is going to cause me problems!
Best wishes to all on cape
Hi Racer, thinking of you and sending cyber cuddles your way :-)
ive done 7 cylces of cape now, last 2 have been hard due to fatigue - seem to spend 50% of my life dealing with this poopy disease - don't we all! With appts or organising and taking meds or lying on the sofa with zero energy.
Anyway, have had ingrowing big toenail for years that I manage fine, but recently skin on toes gone downhill with the cape, and I've been poking about too much with a sharp pair of scissors (eeek!) and managed to make it infected! Bum! Not badly but I mentioned it to onc who has put me on antibiotics and given me a week off cape - hoorah. Feel strangely blessed!
I asked for a longer break soon as want to regain energy and he laughed and said, how long for.. 5 minutes? At least he's got a sense of humour! He said when I get my ct scan result (having scan tomorrow) if stable then would consider 6 weeks off..
So.. question. Who else has had time off cape and for how long and did you remain stable?
love to all crusaders... hoping to stay in the cape club for as long as possible!
Oh racer, so sorry to read you have been sick and are so tired all the time. As others have said better than I can, please rest as much as possible, and keep as well as possible. Good luck with your Onc appointment on Thursday, and do let us know how you get on.
Hugs, and best wishes. Barton.x
Sending you big hugs, Racer, you are going through it at the moment and it's never easy when you feel so bad. Tough times but you're a tough cookie. Look after yourself, carry on doing what you need to do, not what everyone else would like you to do even if it means some disappointment not being able to get out and about. We're all here looking out for you. Hope all goes well later in the week at your onc appt and update us when you want to.
Hello London, glad to hear you will be getting a dose reduction - hopefully that should sort the sore mouth issues in future. However, apart from the mouthwash for the inside of your mouth, have you thought about a normal lip salve for your lips? I use an ordinary Boots one (not because of the Cape, but I have always had dry lips) and that works quite well. Or try ordinary Vaseline. It sounds like you need a temporary barrier of some kibd, with some moisturising properties.
Good luck and hugs. Barton.x
Brilliant news, George! I'm so pleased for you! It's always lovely to read someones good news.
London - a dose reduction shouldn't make any difference to the effectiveness. I believe the Americans have done a study which shows that a lower dose is just as effective. I think Oncs generally start people on the highest dose possible to see what they can tolerate. It seems to me you are on too high a dose currently, so your hospital team could very well give you a reduction. By the way, the effects are cumulative, so I'm not surprised you are feeling worse on your week off - you will probably find that the week off catches up with you during the first week of your next cycle and you feel better then- that's what generally happens to me, anyway. Good luck.
Hallo Sian, well congratulations on your new horse! Your news has brought me out of the woodwork, having a mini break from cancer stuff and have just spent a glorious 5 days in Venice, so beautiful... I didn't feel bad on my week off Cape but my hospital did an unusual regime of one week on/ one off. Hopefully they will jig the dose so you feel ok on it, I got 2 1/2 years out of it and felt better than I do on my current trial. Only thing I noticed....nearly 18 months on,my feet still got red and sore after walking in Venice! 😕 better to be in the saddle!!😀 I'd love to hear about your new ned, PM me if you have time x
I had a dose reduction immediately when I started Capecitabine back in 2013. I continued to have stability in my bone mets for the 18 months I was on it and also shrinkage in my liver mets in that time. After 18 months a scan showed slight progression in the liver mets which is why I moved to a different treatment.
It's all down to a balance between not suffering too many side effects and getting results from the dose you are on so tweaking it is fairly normal. In fact when I started it my oncologist said that you are usually started at the maximum dose to see how you tolerate it but most of her patients moved down to a reduced dose and this was almost always the case in her experience.
Enjoy the week off although sometimes you can feel a bit worse, as other ladies have reported. I found it took me a few cycles of Capecitabine for my body to adjust to this new treatment regime so didnt feel great however after that I felt pretty good all the time I was on it.
Well done Racer, yes Cape used to make me very sick in the beginning....hope tomorrow is a better dayxx
Lovely hear from you again, racer! Sorry to read that the nausea is still troubling you. Enjoy the good days, and take it easy on the others. That was very thoughtful of your son - shame you weren't up to it, but I expect he was just glad to do somethong for you.
Hugs, and best wishes. Barton.x
Oh, London, poor you! I know that feeling (although not recently, luckily!) - the feeling as if you are walking on burning coals mixed with ground glass! Really nasty. Plenty of cream is the answer, as others have already said. I used to use Vaseline, with cotton socks on, but you have to keep your feet up as much as possible as you tend to slide around in your slippers otherwise! I now use Nivea Express Moisturiser instead as it soaks in nicely. However, while your feet are still so tender you will need to keep off them as much as possible. Then take it gently for a while. Hopefully it is a side effect that you won't get again.
I take the mushrooms as capsules so no taste. Babsy xx Racer, they say having a fighting spirit helps prolong life and you have buckets of it, so all the very best xx have you checked out the website www.canceractive.com? Might be worth a look .