Post-op FLOT - How many rounds did you have?

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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 NickyF

    I'm a bit behind you, I'm just over 5 weeks post op and meeting my oncologist consultant on Thursday to discuss how many FLOT rounds I need.

    My histology was clear too, the surgeon said all cancer removed and only 1 out of 68 nodes removed was bad, he was very pleased as am I.

    I had bad pins and needles during pre op FLOT and they reduced my last round to 80% which did help.

    I have been selected for Sarong as well so when I see my consultant I'm going to ask if 4 rounds have to be completed because like you if I experience bad side effects again I don't want it to be too much for my body.

    My plan was also 4 FLOT op then 4 FLOT and of course I want to make sure it's completely killed off but don't want to damage my nerve endings.

    I guess it will depend on what my consultant decides after reviewing my histology report.

    It is very demanding both physically and mentally and I will just have to wait and see.

    Best of luck with the rest of your treatment

    Best wishes

    Dean 

  • Thank you for your support Dean. You are right, it is both physically and mentally demanding!

    I spoke to my oncologist just now on the phone, and I am going for round 4 on Friday as planned. However, she's dropped the dosage for 3 of them (not the pump) to 65%. I am very happy at that. She said that was the minimum effective dose, and anything less probably wouldn't be worth having at this late stage.

    I do feel a bit stronger today, and hope by Friday that will have improved even more. Even so, it's the last one and that is a huge step. She has also arranged for a scan a couple of weeks after, so all is still going to our original plan.

    You seem to be doing so, so well. I've been following your progress. You've absolutely got this, and have no doubt you'll get through your final rounds. I found that knowing what lay ahead was a great summer (no matter what the weather lol) and not having to face the op this time gave me the push to deal with it. Optimism and positivity is definitely key to dealing with it all :-)

    Wishing you all the best too. It'll soon be all done, quicker than you think! My last rounds feel like they've whizzed by!

  • Hi NickyF

    I am so pleased for you and yes it is a huge step. Well done you for pushing through it all you should be so proud of yourself.

    Just a bit strange the pump wasn't reduced as they told me that was the drug that caused my neuropathy which is why they reduced my last round e 80%. I guess everyone is different and to be honest I just want to get on with the chemo asap to finish my long and at times difficult journey.

    Like you said it will hopefully go quickly and I will be on my way to recovery.

    Thank you for your kind wishes too it means a lot and I hope your  last round goes ok , lots of luck to you

    Best wishes

    Dean

  • 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 Sparkles

  • Hello Jennie, and thank you for thinking of me.

    I have had my 4th dose, yes, and it was reduced from 80% (which I had pre-op and first three rounds post-op) to 65%. To be honest it doesn't  feel like it's made much difference though. I had it a week ago, and although the chemo fog brain has lifted, the weakness and neuropathy is still preventing much in the way of getting around. The sickness was just as bad too, but that is easing now and the tablets did help a bit. I've been telling myself daily that 'every day is a healing day' now, and that is definitely helping me get through mentally. In my head I feel great... the poor body not so great. All done though, and I'll improve now, I'm sure. I have a scan and a check-up next week, and oncologist appointment the week after, so being well monitored.

    I am more than happy to answer any questions you have about your op. It's a big deal, and the anxiety before it awful, for both you, and your family. The doctors seem to tell of worst case scenarios which doesn't help either. I know they have to, but it doesn't help with how you're feeling about it.

    The main thing I've personally found is that healing takes twice as long as you first imagine, although is mostly quite bearable, BUT the care, pain relief, and the whole hospital stay at the beginning was a lot better than I imagined it would be, and all the tubes, drains etc they mention aren't as invasive and don't stay in very long. Your care afterwards will be excellent.

    Wishing you all the best. It will soon be over, and you'll soon be mending. x

  • Hi Jennie

    Hope you are feeling ok today. My post op chemo starts in just over 3 weeks and to be honest just want to get on with it now.

    Not sure what op you are having but happy to answer any questions you have if I can.

    Will be thinking of you and Cool Blue next week. I'm sure it will all be ok.

    Today is lovely blue skies and I'm going to try and go for a walk it's so nice out there

    Best wishes

    Dean

  • Hi NickyF

    Well done for getting through your post op chemo that is a huge achievement. I know you are probably feeling exhausted and a bit nauseous but like you say every day that goes past it seems a bit better.

    I hope my chemo goes ok in just over 3 weeks time. Think they have reduced the strength to 70%as I have lost 3 stone since the pre op chemo.

    I too had bad neuropathy so I'm hoping that doesn't come back.

    I am pleased I will be monitored closely for the next 3 years on this new trial. I know the fight isn't over yet but I will beat this and even though some days aren't great just have to stay positive.

    Hope you continue to feel better and recover quickly

    Best wishes

    Dean

  • Thank you Dean, that's really kind of you.

    I got a bit cocky over my first two rounds of post-op chemo, as I only had effects for about 4 days and felt good the rest of the time. Even the chemo nurse said to me "You're probably doing so well because it's not fighting anything now." However, the cumulative effects hit at round 3, and I felt awful the whole 2 weeks. I was given choices though - I could have a reduced dose (which I took), or could stop at just 3 rounds, which they said was very common and would be fine, or I could have delayed the last one for a week. Like you, I just wanted to push through though.

    I hope it goes as well as it can for you. It does feel like a step backwards at first, as I expect you're healing nicely from the op now, and can taste food again and have some energy. Chemo, of course, strips that joy, but keep up your amazing positivity. It's the end of treatment, it goes quickly, and you'll soon reach that 'every day is a healing day' point.

    All the best Dean.

  • Thank you so much too. It's good to know what I might face during the post op chemo. My last round of chemo pre op was reduced to 80% and I coped a lot better with that. So I'm hoping as they are reducing it to 70%due to my weight loss it will be ok.

    It's 7 weeks since the op and yes can taste food so I'm making the most of it!

    Don't have much energy yet but it's still early days and it was a 7 hour op.

    Thank you for words of encouragement that means a lot and yes staying positive

    I wish you all the best for the future too

    Best wishes

    Dean

  • Hi NickyF

    you have done it, well done Sunflower 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 Sparkles