Small bowel cancer

Hi Craigavon. I’m tagging in Missem as I think she started folfox last month. The oxaliplatin causes a reaction to cold things so make sure any cold drinks are at room temperature at least - I used to add a splash of hot water to my squash. If you try to get anything out of the fridge or freezer with your bare hands then you will get a tingle so make sure you wear gloves - I found some cheap ones on the market which had knobbly bits on the palm so were good for gripping. During the colder mo this it’s recommended to cover your mouth and nose with a scarf after your infusion as the chill in the air can causes your lips to twitch and spasm but it might not be too bad at the moment. 
I’ve attached a link to the page about Folfox - it looks a bit daunting with all the side effects but they look to have listed absolutely everything and it’s unlikely that you’d get all of them!

https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/folfox

Hope this helps

Take care

Karen x

Hi Craigavon and thank you for tagging me Kareno62

I have had two rounds of Folfox so far, my third one has been pushed to next week because platelets being slightly low. 
I am scheduled to have a total of 12 rounds over 6 months. 

My side effects have included the cold sensitivity which kicked in very quickly which I wasn't prepared for. I was hooked up to the Oxaliplatin and needed to wash my hands after a bathroom visit. Didn't wait for the water to warm up and my fingers gave me a right telling off. It was a very weird sensation but I learnt my lesson. First time it was mainly fingers and feet - if your floor is cold, like bathroom tiles I'd recommend wearing socks or slippers since I didn't a few times and the soles of my feet were burning for a little while after. My throat was also sensitive to cold drinks and food so needed to make sure everything was room temperature of hot, would pour juice up from the fridge an hour or so before I wanted to drink it, have jugs of water poured up by my boyfriend to always have room temp water and when I need milk for my tea the oven gloves come out to get the milk out of the fridge and pouring it in to the cup. Second time I also noticed my eyes, nose and throat being more sensitive than the first. This is mostly down to the fact that I am allergic to everything in the summer - trees, grass, some of the prettiest flower bushes etc, so eyes more watery, nose more runny etc. This would leave a burning sensation in my eyes and nose as well. My prescription hayfever meds helped with most of this. 

Other than the cold I would be very tired and experienced quite a lot of nausea for a few days, this got better second time around with new drugs. Steroid tablets got my energy levels up and then I completely crashed for a few days. 

I have a temporary stoma and expected diarrhoea and was given Imodium tablets, however the first couple of days I was constipated and two days of diarrhoea before it got back to it's normal self. 

Other than those I have noticed my hair has started to thin and after the metallic taste in my mouth my taste has changed slightly. I used to love coffee but now I'm quite happy without for example.  

Obviously all the side effects are so different for everyone and you might not experience the same or hopefully any at all but these are the ones I've noticed for myself. 

One thing I would recommend even in hot weather is to bring something with you to hospital to wrap around your head when you leave if you were to experience the breeze or wind being a bit cold. 

Hope this have helped and I hope your Folfox experience goes well and with as little side effects as possible. 

xx Em

Thanks for all that advice Missem I have indeed started to experience them symptoms you have told me about esp the tingling hands . When I drink anything hot or cold I get a pain in my bottom back teeth. 

Thanks for all that Kareno62. Will def take under consideration. 

William