Neo adjuvant chemotherapy and radiotherapy

Hi Beverly 

Sorry to hear your having such a rotten time I think the people including myself are on FLOT because I have adenocarcinoma rather than squamous cell but I might be wrong! But hopefully with pausing it you might get to feel a bit better Fingers crossed !

sending hugs Tricia x

Hi Beverley

I'm so sorry to hear that you're feeling rotten. Have you had two lots of chemo now?

I had the same chemo and radiotherapy as you a year ago now. Mine was squamous cell too but mine was in the upper half of the oesophagus, abutting the heart. I didn't have a NG feeding tube fitted although it was mentioned as a possibility towards the end of my treatment when swallowing became very difficult and painful. I had a lot of back pain from time to time but no regurgitation. I generally felt pretty awful during chemo but I don't know how much of that was due to the anti-sickness medication. I react badly to Dexamethasone (anti sickness steroid). I have chronic diarrhoea due to other digestive problems unrelated to my oesophagus so I can't say if the chemo made it any worse. However after a few days of taking the Dexamethasone the diarrhoea went away completely. Normally the treatment for diarrhoea is loperamide (Imodium). The instants dissolve on your tongue so easy enough to take. Worth asking your consultant if they're an option for you maybe?

I'm sorry, I don't have any other suggestions. Totally get that you just want to get on with the treatment, hopefully they can restart it soon.

Mutti

I got the same hope u ok

Hop u ok

Hope u ok

You're correct!

Got it in the same place  hope u ok

Hi

I had squamous cell carcinoma, mid oesophagus. I had chemo & radiotherapy (no operation). My chemo was different (cisplatin and capecitabine) but I also had explosive chronic diarrhoea - however this was caused by the Fortisip drinks I was syringing into my stomach feeding tube. My dietician and Macmillan nurse were great, they sent me different drinks/liquids to try. I wasn't getting any nutrition (I couldn't swallow anything, just had the feeding tube) and was getting weaker and weaker, losing more and more weight. My dietician and Macmillan nurse were great, they sent me different drinks/liquids to try. In the end I found that the neutral Fortisip suited me better. 

I found that talking caused spit to gather at the tumour then I had to cough it up. So I stopped talking, I messaged everyone on my phone, even family in the house!

I felt generally rubbish through the whole 3 months of chemo/radiotherapy, I slept a lot. But eating improved as the chemo shrank the tumour. Then radiotherapy made my oesophagus sore again so had to rely more on the feeding tube again. 

It took a long time to get my fitness back, but I'm 3.5 years clear. 

Chemo can cause diarrhoea but it could be whatever you're putting through the feeding tube, so it might be worth telling your nurse and dietician. 

Take care,

Amanda 

Nothing to apologise for, Beverley. When you need advice, you just have to say it as it is. I hope there's an improvement soon. Rod's on a different treatment pathway so I can't offer any advice.

xxx

Thanks Mutti. I have the Imodium Instants but have been warned not overuse them. I also have been prescribed Metoclopramide and Prochlorperazine for the nausea, neither seem effective and I think make the diarrhoea worse.  I shall probably just have to get used to this new normal.