A question for those post-op and long-term clear please?
My pathway, like many, has been FLOT x 4, operation, mopping up FLOT x 4.
I'm currently on round 3, due to have round 4 this week. I've had three rounds at 80% dosage and the first two went well - a LOT better than any of the pre-op rounds I had (which were also at 80% as my first round at 100% hospitalised me), and I was pleasantly surprised as everyone, including my surgeon, said they would be harder. He said at the time 'not to beat myself up if you can only tolerate three rounds or less', and so far I've been lucky, I've made three.
BUT... oh my goodness this round 3 has taken it out of me hugely. I've been nauseous now for the whole time, which of course affects appetite, and in turn weight. I genuinely feel this round has done more harm than good, I feel so ill and weak with it. The neuropathy in my hands and feet has ramped up, and walking is becoming difficult due to muscle loss and weakness.
I am desperate to do the full 4 rounds, and speak to my oncologist this week on Tuesday, bloods on Wednesday, last chemo on Friday. I'm going to ask if she can drop it to 50%, but whatever the decision I know I can't do another 80%.
Thankfully I am on an intensive follow-up study called SARONG, and will be very closely monitored for 5 years, so if anything does reoccur it will be picked up quickly (which is what this particular study is about). I'm also on the Add-Aspirin trial too, so my after care will be really good.
I'm scared though... what if I put myself at risk by not having all 4 rounds? I'm just feeling my body really has reached its limit now, both mentally and physically.
I know I'm lucky, I am now cancer free and have had the histology results in writing, as well as verbally from my surgeon. I guess I'm doing what he said not to, and beating myself up about it.
Hi Nicky F
How are you doing, did you get the dose reduced? Have you had round four. Your positive out look and support has helped me since the first time I posted on here back in October 2023.
I have been reading the dosage information in these threads, my pre-op started at 50% as the awaited tests, my last two were 75%, I found that level tough so the thought of 80%. My tumour responded and shrunk from what I had.
I hope you are doing ok Nicky and the nausea, neuropathy is improving for you.
when you do feel better and if you don’t mind can I ask some questions about your Op. I am about to have the same on Thursday at QA.
All the best, blue skies for the south today, enjoy
Jennie 
Hi NickyF
you have done it, well done 
and as you say, every day is a healing day and you have the spring and summer days to help build your strength back up.
I have read some of your other posts about your operation, the Ivor Lewis, keyhole robotic procedure. So far I haven’t been given to much scary information, The surgeon explained what will happen, stomach reconstruction first then onto my side to go through the back to cut and re- join the oesophagus.
I was told I would be in the ICU for about 3 days then to the ward.
when did you have your 1st drink? I was told I would have a cuppa on the 2nd day? I won’t have a test first for leaks, was this the case with yours?
I am seeing a surgeon this afternoon then the anaesthetist so more info, hopefully not to scary. I am ok at the moment but I know come Tuesday, Wednesday the nerves will kick in.
You say you had a leak, was this at the join?
I have told them I do not want Morphine or morphine based pain relief, it just puts me on a high and doesn’t help the pain. I get on well with Tramadol so I will see what they say today.
Jennie
