Post op FLOT

So sorry to hear this Sarah you really need to call and discuss with oncology, and explain how you’re feeling !! Yes I have applied for the sarong trial but don’t know what group I will be in yet !! I do hope you feel better soon xxx

I agree with Linda. Discuss the pros and cons with oncology…… a reduced dose might be the way forwards. Many people can’t manage four post op cycles. 

Excuse my typo ….. I meant Tricia!! Been a long day …. will message you

Hi Sarah! Sorry you are not doing so well: my friend had stage 3 cancer. 4 flot pre op, surgery and then 2 post op chemo: he could not take anymore with and the oncologist agreed it was causing more harm than good he was told most do not do all 4 as it is so tough . He’s doing really well and has three month scans to keep an eye on everything. There are guys on here who pushed through all 4. It’s a very personal choice and a chat with your doctor should help you with that. Take good care! 

Hi Sarah 

You need a good chat with your oncologist .Maybe some tweaks to your post surgery chemo can be arranged for you 

I’ve read on here that most people find the post surgery Chemo harder to tolerate than the pre surgery chemo .

My husband did two out of the four before he developed a pretty nasty lung infection which took weeks to clear .The next two chemo cycles were then cancelled by mutual agreement between him and his oncologist .

Hope you’re feeling better soon 

Best wishes 

J 

Hi Sarah how did you get on with the pre op chemo ? And what were your margins as they felt you needed post op chemo ? Just out of interest Tricia xx

Ah thank you - yes I’m going to speak to the oncologist team and see if we can agree on a more manageable course of action 

Sarah x

Hi Tricia 

I did ok with pre op chemo and managed 100% full strength. The plan was always to have pre and post op chemo - it was just what they said was best to do. The tumour had spread to the outer of my oesophagus but was felt it had all been successfully removed. 
Sarah x

Thanks for that Sarah will wait and see what the Oncologist says but won’t be surprised if I have to have more chemo not looking forward to it though !! Let’s hope they call it a day for you sounds like it’s been really rough

Hi Sarah

I'm sorry you're having such a rubbish time, the post op chemo is much worse than pre op, isn't it? I had to have my pre op dropped to 80% after I got sepsis after my first one, and managed 3 rounds of post op chemo at 80%, and the final one (from memory) was 60%. It absolutely hammered me though, and I'm 15 months post chemo now and still have peripheral neuropathy in my toes, and still get tired quickly. I'm really glad I persevered though, as mentally I would have struggled knowing I'd not done the full 4 rounds.

I am also on the SARONG trial, intensive follow-up, and it's fabulous! Very reassuring. I had my 12 months clear last December, and excellent gastroscopy result, and am due to have my 18 month scan on 8 May. I feel really good as a whole though, and apart from the ongoing niggles, all is fine.

1. I would definitely speak to your oncologist and see what they recommend, and take it from there. I know how you feel... REALLY know. It's just awful, but you'll soon look back and it'll be all done and dusted. Wishing you all the very best. xx