One thing I did forget to mention in my post regarding what to expect from Cape was that it took me, well, my body a few cycles to adjust to the tablets. I think we forget that it is chemo, just because we dispense it ourselves doesn't mean it goes unnoticed by our bodies. To be honest in those first couple (3?) cycles I did think that IV chemo would be far better as the rough days all come together soon after the infusion and you get to know the pattern of SEs so can lead your life around them. I think once my body adjusted, and I had a dose reduction, it did get a lot better so don't believe that it will be like this all the time. Your body has suddenly started having chemo so it's no wonder it's complaining a bit! Hope that the fatigue and nausea subside, if the anti emetics don't give much relief try a different type next time, sometimes you have to find the one right for you.
Hi racer, sounds like the onc you saw is more on your case than the previous one. Hope you have managed to get out a bit over the weekend, even if the weather has been trying to stop us! Look after yourself.
Hi to all other Cape crusaders - Hooe it's all going well with you and you're getting good results from the peachy pills.
You're no wuss, marli! Don't ever think that. Any chemo has side effects - just because you are suffering after 3 days does not mean you are a wuss - it just means that it affects you differently to other people.
I can't really help, except to say rest as much as possible and keep taking the meds (hopefully your hospital issued you with antiemetics?).
Wishing you all the best. Hugs. Barton.x
Thank you George for your reply. Good to hear that you are enjoying your break.
No major problem at the moment after 3 days except for fatigue and a feeling of nausea. . Is this fairly normal so early in treatment? Makes me sound a bit of a wuss. Marli x
Hello George, so glad to hear you are OK, and thoroughly enjoying your Cape break! Well deserved. I do hope you have a wonderful time in Valencia! You lucky thing (am very slightly jealous!). Have a lovely long weekend.
I'm OK, thanks, George. I bit the bullet, and resigned from work on 12th April. I had planned to resign on Tuesday 18th, but had forgotten I would be off that week. I took my resignation letter in with me on the Wednesday, but had a bit of a meltdown at work in the morning - mainly due to sheer exhaustion (one of my se's causing worry and hence loss of sleep, etc) (an se from my mets, not from Cape, I hasten to add), and was offered immediate termination of employment without having to work my notice. My resignation letter had stated that I was resigning for health reasons. So you are now speaking to a lady of leisure! I have to say, I couldn't have done it without PIP, and a fairly good pension from a previous employment. I realise how lucky I am.
Weekend plan is for some crafting, as it's a friends 50th birthday next Sunday.
Hugs and best wishes. Barton.x
Wondering where George is lately. I hope you are OK, George? Please let us know how you are getting on. Hope everything is well with you, but worrying slightly as you have been so quiet!
Hugs, and best wishes, Barton.x
Hello racer, lovely to hwar from you again! Thanks for keeping us updated. I'm so glad you stuck to your guns (you go, girl!), and insisted on continuing with treatment. It is obviously having some effect, and, as Moijan says, this Onc is much more sympathetic to your wishes. Perhaps you could do as Moijan suggests, and try the two weeks on and one off next time - go with what you feel comfortable with, though.
Good luck, and keep in touch.
Hi Racer, very well done....what a star!
sounds as it this onc is a little more creative...yes when things improve try the two weeks on, one off, if its on the table....the sickness could be the cape...I used to get that, so antiemetic might be a good thing to try.
so pleased you are still positive....keep plodding on....its what we all do reallyxx
i had an mri yesterday..so am awaiting results...oh and another blasted wee infection too! But generally am just like you....feeling my way forward, listening to my body and travelling hopefully. Xx
Thanks for updating us, marli. Sounds like you had a fairly successful meeting with your Onc - I like the way she thinks (mine started me on a high dose - 4000mg a day - for about 8-10 cycles, and then had to reduce it because I had severe breathlessness, to 3600mg per day).
I never suffered from nausea with any of my chemos, either, but I did (and do) get the big D, as George calls it!
Keep in touch.
Thank you Barton and Nicky for your replies, much appreciated.
After seeing the onc. I was a little happier although the CT did show a little change which could be explained apparently so need to see what the first one after first round is finished.
Someone some time ago mentioned that higher dose tablets were quite big so I had been worried that the tablets would be difficult to swallow them. Thankfully they are just the size of paracetamol and are no problem. She said she has started me on a lower dose of 1650 for the first round and then will probably raise it for the second. This seems to be the opposite to what appears to be the norm.
Nicky- your comments about being sick were comforting - I was never sick during my first 2 lots of chemo in 2009 and 2015. My horror is diarrhoea. I suffered for 15 months, and it was hell.
Keep you fingers crossed for me please. Marli x
Thanks, Nicky! You gave a much more comprehensive reply than I did - so much more useful information.
I hope you manage well, marli. As Nicky said, you can always ask for a dose reduction, or a break, if you are suffering from the se's. I have had both over the (nearly) 3 years that I have been on Cape.
Please ask anything you like - we will do our best to answer your questions, but if we don't know the answer we will always refer you to your medical team for the answers.
Hugs and best wishes. Barton.x
Sorry you have had to join the secondary part of the forum but I see you have already had a warm welcome from Barton. We are a friendly bunch and most often join in a relevant treatment thread or dip in and out of the Bone Mets please join in thread - even if we don't have bone mets or have other mets alongside bone mets. Feel free to join in on any thread.
I have bone mets which were diagnosed in 2008 and then liver mets came along in 2013 to join the party! I started then on Capecitabine and it worked well for me for about 18 months, shrinking my liver mets and stabilising my bone mets. I have an awkward BC that likes to change receptor status so after Capecitabine I went onto a Herceptin based treatment as I was now HER2+ having been HER2- for 10 years! But that's too long a story to bore you with.
I had a real problem with the thought of nausea when I started Cape as I had awful nausea with FEC in 2008. I started taking anti sickness meds but quite soon realised they were the reason I felt so spaced out and stopped taking them, I didn't suffer with nausea at all after that whilst on Cape. Btw they were metaclopromide, which is the one often given and can have adverse SEs for some people - just giving you the heads up. I also had a 20% dose reduction around the same time (cycle 1) but this didn't reduce the effectiveness of the treatment, just the SEs. I did have some diarrhoea after the last tablet of the cycle but nothing to cure any real problems, just one day or night of it so didn't need to take any meds. I did get sore feet but, again, nothing that caused me real issues, I just needed to moisturise well and used a cracked heel balm on my feet which has the active ingredient of urea at 25% rather than the 10% which some moisturising creams have. Boots own was fine and is the same as branded ones. I did get small splits in the side of my fingers at times but used to put on healing plasters, again own brands from various places work well.
Also if SEs get too bad you can ask for an extra week off, this is fairly common, as our bodies sometimes need an extra break to recover especially if SEs are getting bad, and it allows skin to heal. I also travelled abroad whilst on Cape (lots of times!) so don't feel you have to stay rooted to the spot, some oncs don't like the idea of travel whilst on chemo but for goodness sake, we need to enjoy ourselves! Usually your blood counts don't take anywhere near the pounding that other, IV, chemo's give so you are unlikely to have low blood counts which is the usual reason not to travel in case of infection.
Hope that helps. There is loads on info on this thread but it is a looooooong thread to read all of the advice, I've just written down my experience of a very doable and effective chemo.
Good luck with everything.
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