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.
Hello Paul, thank you for responding to my post.
Did you have the keyhole? and no testing for leaks? They are a fantastic team on all levels of cancer care.
My tumour was 1st diagnosed as a NET, after 2 rounds of chemo it was re-diagnosed as a Adenocarcinoma T3N2M0.. I was then started on FLOT, I am 64 and after the 6 rounds of chemo not as fit as I was.
I met with the surgeons yesterday and anaesthetist. He outlined the procedure but did not bombard me, he did make a comment that threw me at first but I guess they cannot be 100%. He said, I should be able to do the reconstruction, I will do all I can to get the best outcome. It played on my mind but I now feel he was just laying it out, they cannot be a 100%.
I am anxious about the epidural but I guessing you have lots of support and a good dose of local anaesthetic.
How long was your op.
They said if all on course, 3/4 days in ICU, then down to the next level, then down to pre-home ward. How many days before you went home Paul.
Do you use the SPLASH group?
It’s nice to chat with a fellow QA person, are you having more Chemo or did you stop at 2? How has your eating journey been so far.
Best wishes Jennie 
Thank you Dean, I am an over thinker, your posts have really helped with this as well as my bestie.
I hope I have a good connection on my phone and I-Pad, I am with Vodafone and I have been quite disappointed with my network in the hospital so far, no bars!!
Best wishes 
Jennie
