osophagus cancer diagnosis

Hi,

I have recently been diagnosed with oesophagus cancer stage 3 and have come across this forum while googling, since the middle of September, I have had a plethora of tests and have been very well treated by the hospital staff, I’m starting my FLOT treatment in 9 days’ time a regime of 4 rounds 2 weeks apart then hopefully followed by surgery and then another FLOT regime.

  • hi 

    i had the same cancer 5 years ago  i was 19 stone i went right down to 9 stone in 11 weeks .

    had 13 weeks solid chemo 

    then had a huge operation had the damn thing removed 11 hour operation.

    now cancer free 

    had a feeding tube for 4 months 

    now i can eat as normal as i can 

    but have to have a drink with me when i eat as the first mouthful gets stuck 

    i can only eat small meals now 

    i am now up to 14 stone.

    feel very well.

    so there is a light at the end of the tunnel

    but you have too fight fight fight it

    from 

    frddycan

     

  • Hello Sue CC, 

    I never forget my fellow travellers (:

    Gone a tad quiet on here. I think Andi 's news made us all a tad jumpy.

    Good news regarding Martin's stomach - under the microscope, it was looking good. No Lymph's and clear margins is always good to hear.

    Your Questions= weight loss- BIG .yes - and it always comes in heaps post op. My guy lost about 11/2 stone, about 25 lbs. He had post op chemo, so continued to drop, but he did have a feeding tube in for the whole chemo thing. The loss stopped dropping after about 5 weeks after the end of chemo, so about 3 months in all, then it just stabilised and has been thus ever since, I think all the fellow travellers all  lost bucket loads post op- most about the 2 stone mark.

    Post op infections of some shape or another are compulsory it seems, mostly chest- the body is not happy with all that pulling about and bugs find it an attractive place to move in- lucky they can be dealt with (:

    A big hello to our  (sort of newbie) Fredcan - what is great about you turning up is that you are 5years !!! Post op, so a real old hat.excellent. My husband says only 'small meals' for him !! Ye right LOL- h

    Take y'all

    keeping that faith

    Hilts

  • Hi Sue and everyone,

    My husband's situation was different because he ended up having to be opened up a week after his Oesophagectomy due to internal bleeding. This  resulted in further complications and another planned emergency operation in July. So three major operations in 8 weeks. Then five weeks after all that he had 8 more weeks of FLOT. Therefore he lost 2 1/2 stones. I guess what I'm really saying is that everyone is different but as Hilts said everyone loses weight for a while. My husbands lowest point was after the second lot of chemo (he didn't have a feed tube in at that time). He has managed to put a stone back on but appears to have plateaued now. It's also the muscle wastage that you notice but my husband has gained some back and still goes to the NHS Active recovery. 

    I was pleased to read that his histology results are good.

    Hello to Fredcan - such a positive, hopeful message. 

    Andi you are in our thoughts and hearts. 

    Keeping the faith

    Milly
     

     

     

  • Hi everyone 

    not been on for months after 2years post op with no follow up scans and very good health a scan in November showed cancer in nodes , kidneys , liiver , lungs and on my spine however i am on chemo round four and and feeling ok , although i would say the tablet regime is much more harsh than FLOT after all the hard work up to now i for one wil  not be chucking in the towel and and cancer cells will find i am a formidable opponent , there will only be one winner , yours truly , slightly miffed at the lack of scans situation during lockdown although right up untill last September at my six monthly check  all seemed  ok, mind you these were usually a 10 minute chat and nothing else , questions are being asked trust me, i refuse to ask the "how long" question especially as i feel pretty good and think that can be a negative in so many ways , i have also met many people who are as much as 8 years into chemo treatment so it is different for everyone anyway i will be posting regularly again from now on , take it easy and keep well everyone and yours.

     

    Regards

    Douglas

     

  • Hi Dooggreg,

     

    Good to hear from you. I am sure what you say is right and I'm sure you'll fight...I remember you as the one who seemed so positive so make sure you keep that frame of mind...good luck brother

    Lee

     

     

  • Hi Leechap

    Thanks for that , the words i hate  are "sorry to hear that" when you tell people , i have always been 100% positive since my original diagnosis in December 2019 , ok everyone has different personas , mine is i have never been down for maybe more than a few hours , i just look at myself and get my big boy pants back on and man up , bring on the Snow today i say , i will be getting the sledge out !!!

    take it easy

    Douglas

     

  • That's what I expected...I'm on the front in Benidorm having a cold beer... I'll have one for you

  • Hi again

    I used to work in "the talk of the town " in the early 80,s ,  i am off to Koh Samui in a month  and i will have a beer for you and a kiss and cuddle with couple of bar girls to wash it down of course lol

    Douglas

  • Hi Doug,

    You are clearly still the positive, determined guy which got you through the treatment and Oesophagectomy. Re scans we were told by my husbands oncologist that they only do a scan if they  feel they need to ie, symptoms.   There does seem to be differences between trusts? 
    I'm sending positive and healing thoughts to you. 
     

    keeping the faith 

    Milly