Capox Chemo starting this week, have you had any experience with this?

Hi Blue Skies,

So sorry to hear you had the heart problem too. Absolutely terrifying! After the oncology team accepted that capecitabine was NOT for me, they suggested Raltitrexed instead. They gave me a couple of days to think it over. When I went back to say “yes” they had weighed it up again and decided to stop everything. 
The main reason for this is because I have a potential met in my lung. They can’t quite tell yet what it is, but they are keeping an eye on it and need to identify it before giving me any more chemo.

I absolutely hope from the bottom of my not spasming any more heart that everything works out for you on Friday xx

 Nic x

Honestly sweetie don’t worry!

The heart spasms are extremely rare. From what I could see when I was researching this, the worst thing people generally seem to experience with capecitabine is a horrible upset tummy. I am always reluctant to tell people who ask about CAPOX because I don’t want to scare them, but I’d rather if something like that happened to them they would draw some comfort from the fact that it is a recognised side effect and so not to panic. I’m also very much still alive too.

Despite this, I would still say that the oxalaplatin part wasn’t so bad, despite the weird stuff it does. You’re not alone at all in dreading it, but like the surgery itself, it’s not fun but it is all helping you to continue living a happy life ️

Hi Arial88, first off well done for getting through the op so well, I had the same experience there and feel so grateful and also proud to have managed it, I use that to push me through the tough parts.

I hope all goes well on Friday and that the DPD deficiency comes back negative,

Sending strength your way xx

I feel exactly the same about the capecitabine experience - in terms of not wanting to fear anyone but sharing awareness around it.

My issue was enduring it for 2 weeks, I should have shouted louder. 2% is very low but I'm grateful to have found another person who has been through this, (though I wish you had not) it made me feel much less alone and like I was not being weak. It's hard when you have nothing to compare the experience to. 

The oxalaplatin didn't feel bad to me, I have some neuropathy and sometimes a bad taste in my mouth. 

Nic, thank you so much for this. Can't say how grateful I am for you sharing this with me. 

I'm really sorry to learn of the potential met, I hope they can get to the bottom of this fast for you and that the tests come back clear and the next steps are laid out for you so you can plan and move forward.

I hope you don't mind me asking, where in the UK are you? Sending strength and warmth your way x

Hiya,

I know what you mean a out taking comfort from someone else having the heart problem. I felt like a failure and a bit pathetic, but my oncologist pointed out that there was absolutely nothing I could do about my body reacting like that and you don’t get prizes for enduring something that could potentially kill you!

I’m in Cornwall. We only have one hospital in the whole county, massively busy, but I have been treated like royalty all the way through this entire adventure!

Wishing you very, very good health, my friend.

nic x

Ah Cornwall!!!!!!! How lovely xx

You sound like a tower of strength and love that you have been treated like royalty and deservedly so!

Health and courage your way in abundance x

Unfortunately Cornwall isn’t as lovely as people think. In reality, it is second only to S. Wales in terms of poverty and lack of infrastructure and investment. People forget that a place that feelsike you’re going back a hundred years in terms of unspoiled beauty also has all the drawbacks of going back 100 years too! Nearest motorway is 100 miles from my house 

 Nicnak72  it is easy to forget that. I mainly know the North coast but did see a Simon Reeves programme about the poverty and lack of investment.  100 miles to a motorway! That is quite something! I can appreciate holidays and living somewhere are very different xx