Oesophageal cancer

A lot of us on this forum have had FLOT followed by surgery. I had a few side effects including losing your taste and hair. Everyone is different but your team should have given you information about possible effects. It’s a tough journey and is a lot for the body to cope with but he will get through it. Everyone on here will give you support x Linda

Thankyou so much, we've read as much as possible. Thankyou for your support. It's really nice to connect with people who have had lived experiences x

I had 4,cycles of FLOT over 8 weeks prior to my surgery and it was fine but I lost my hair and my taste buds but I hadn’t eaten for a couple of months before I started it so my taste was pretty bad anyway but the best thing was that after the second cycle I could eat again so that was a plus ! I was lucky as I had no other health issues as it does affect some people more that others ! But just tell your dad to take it one day at a time!! X

Keep a pair of thick gloves beside the fridge and ban him from using the freezer at all. Peripheral neuropathy is a common side effect and he will be very sensitive to cold in places like his fingers, toes, ears, nose, etc. I also wore a scarf wrapped around the lower part of my face if I had to go outside and avoided very cold drinks. Fortunately, using these precautions, I avoided any long term damage to my nerve endings. 

Hi  Freckleface!

Thanks for reaching out and sharing the start of this family journey with the forum, you will find a huge amount of support here, and on other areas of the site like this one  

It is positive to read that the op can be done after 4 cycles of FLOT, and I hope that everything goes well for you Dad, this is a difficult time for you all, but as long as you have each other and can talk, you will all feel supported. 

The Macmillan team are available on the number in my signature for 1-2-1 chat if Dad feels that he needs a private conversation, or indeed if the family need support. 

Lowe'

First thing is make sure you have medicines to combat constipation and diarrhoea and use them to combat whichever happens (or strangely enough both). This might be needed on that first dose of FLOT as the body reacts to the initial shock of the drugs (was only on the first cycle for me).

The other thing is the reaction to FLOT is a two week cycle. Unpleasant as you first take it, then you have a couple of days where you are ok. Followed by three days where you will struggle to feel human. Then you get better just in time for the next cycle. When it's bad just remember it will ease off. 

This is really helpful thanks so much x

Hi the journey is just starting make sure you’re father keeps well not near bugs, every one
gets different side effects, mine felt my mouth was on fire, body hair loss hated tea coffee wine I managed to eat so I was ready for surgery keep him focused you need to be strong for the surgery iam 13 yrs post surgery still going strong good luck m

Thankyou so much. It does feel like we're at the start of a massive journey. 13 years post surgery is amazing, thankyou for your encouraging words and advice xx

My husband just had his second dose of FLOT - four weeks after the first. The one scheduled for 2 weeks ago was cancelled as he had quite a few problems (including fainting, falling backwards and cutting his head open. Spent 9 hours in the ED and had 5 stitches). He also had abdominal pain, and constipation which turned into the opposite, needed an overnight stay in hospital on a drip.

He had his second lot on Tuesday, a reduced dose (80%) and all was well until today. The Buscopan he was prescribed for the cramps seems to have stopped working, he's lost his appetite and is pretty down. I don't know what to do!

I hope you're right that this will ease off as he's a very unhappy bunny at the moment and dreading having to go through this twice more, as am I.