Hi Rayb

just been through this had FLOT april and may operation in june  its a long journey but stick witk it.

It may all sound a bit frightening at first i would recommend you read up on your treatment the FLOT is bearable and the operation is not really a worry although it is a major operation i will say that at no point in my journey have i really suffered any major pain and i am 90  percent recovered as of today if i can offer you any help or advice please contact me as it is always good to hear from someone who has been through this procedure recently , our NHS will take care of you by far the best care you can get ,trust me.

do you know what a plo is in an operation? 

would be grateful if you have any idea

sorry to hear about your diagnosis x

Hi Hilts, good to hear from you, your reasoning about the food types and fluid intake types sounds good. Yes baked beans on toast definitely sounds claggy to me.   It sounds amazing the amount of food your husband can eat now tho, he is doing really well isn't he!   Good luck with the scan on 13th, SallyX

Hi Sally tanks for your good wishes and we are certainly looking forward to it. I Hope your husband is feeling a bit better. Have you had a follow up yet or a plan on following up? 
keeping the faith as always

Milly

Hi Milly. He has a video call with the oncologist on 14 Oct - next week.   Then a call with the surgeon in November.   He is still "crashing" after eating, but maybe slightly better at only eating tiny amounts which helps.    He has found he can eat small portions of cereals and also nuts so at least there are some things he can eat.   
sallyx

Hi Sally, 

The crash after eating- yep. Old dumping. What husband uses and finds them brilliant is the glucose tablets diabetics use. Oblong things in a long pack. Any pharmacy will do as a 'leading supermarket' beginning with S (:. About a £1 , so always on the bottom shelf, expensive same stuff further up(:

Husband found the chief perps were potatoes, rice, carbs generally, not Beer for some reason! and when he mega overeats with a lot of carbs, like curry rice & chips, which is frequent): he is learning though- albeit slowly! Wally (:

It has got better though as time has gone on. 
keep the faith

Hilts

Afternoon all, hope you're all OK and keeping trucking on.

Started Round 1 of post op FLOT on Wednesday and definitely felt it Friday, Saturday, Sunday and yesterday a bit more than pre op.

Wasn't much fun at all and like someone said to me, everything feels dialled up a notch - but thankfully feeling more human again today and getting back to normal.

Hilts. Milly, Sally ... how did your respectives find their post op FLOT - similar to pre or dialled up more too ?

Andi, hope you're doing OK the other side of the op - well done for getting through it.

Hi Redski, sorry to hear you're feeling a bit rough - stay strong as it's the last bit and the worse is over.

Lee

Thanks mate, really appreciate that !

Hi Redski.

i feel for you. It is like Groundhog Day, but this is the final straight. 3 more and you are DONE. After a year, no more (:

In answer to question- yes, absolutely, up notches I would say (:.  Sorry, I have a rep for being totally honest when asked something!! All the guys on the unit felt it too. But they all completed in some fashion. Rumour has it, that now the chemo has nothing left to murder, it causes havoc (: and of course your body has taken a pasting with surgery , mentally just about had enough etc. , but remember nearly finished!!! 
so 'get at 'em' Redski - we are with you

keep the faith

Hilts

Hi Redski,

Yes my husband found post op chemo effects lasted longer and were stronger (sounds like an add for loo roll lol). Seriously though it's not easy but doable for most people or they wouldn't be offering it to patients. 
Count down as Hilts says 3 more then done! My husband found warm baths helped with cramps and drank as much water as he could again. Stick with it - you will get there!

Sally I hope your husband's appointment with the Oncologist goes well and he is able to increase his food little by little. 

On a positive note we are enjoying being in the Lake District and my husband has had his first few beers (not all at once yet Hilts) since Christmas Day which was before treatment began!

Andi I was thinking of you today and hope you are making progress. 
Hilts any more updates on the cough?

Keeping the faith for everyone as always

Milly

Hi Redski, I feel for you.   My husband found the post op FLOT tough.   More difficult than the pre-op FLOT.   The neuropathy symptoms I think he found the worst thing of all, causing painful tingling especially in feet, hands, down centre of face, and internally too, compounded by the fatigue.  He kept as warm as possible, tried to keep going for walks a bit.    Rest, also, don't try to fight the fatigue, and rest some more.   Use your jej feed tube if you still have it for feeding and taking in water.    He managed to complete the 4 cycles of post op FLOT, but could not have done any more.   Your oncologist will be keeping an eye on you, so you will only be given as much as you can take.   Good luck Redski, we are all thinking of you.

SallyX

Hi Redski, I feel for you.   My husband found the post op FLOT tough.   More difficult than the pre-op FLOT.   The neuropathy symptoms I think he found the worst thing of all, causing painful tingling especially in feet, hands, down centre of face, and internally too, compounded by the fatigue.  He kept as warm as possible, tried to keep going for walks a bit.    Rest, also, don't try to fight the fatigue, and rest some more.   Use your jej feed tube if you still have it for feeding and taking in water.    He managed to complete the 4 cycles of post op FLOT, but could not have done any more.   Your oncologist will be keeping an eye on you, so you will only be given as much as you can take.   Good luck Redski, we are all thinking of you.

SallyX

Hello everyone,

My dad (63) has just been diagnosed with this horrid disease. He is due to get his staging very soon (desperate to know & dreading finding out). Until tonight, the internet has not been my friend. It's absolutely horrifying. After much incessant googling, I came across this thread and for the first time, since his diagnosis, I've felt an air of calmness. 

Thank you. L
 

Hello lizzyp

I see you are a bit of a night owl - like me (: I've always been like it, but worry is probably helping you stay awake all night (:

Welcome to the 'famous' Oesophageal cancer club- one club you'd no doubt rather not be a member of! ( sorry, I think I'm funny). Here we all are, and as you can see there are a LOT of us x

All of us on here have received that dreaded news. I am not the victim, but my 56 yr old husband in July of last year.  He is done with treatment (I always say for now, tempting fate thing , rather than reality). He was given visable disease free status in about March, they never say cured, for at least 5 yrs - happy days eh! (:

Belive it or not, you are at the very worst part of the whole thing, once you know what you are dealing with  and what the treatment plan is, It gets slightly easier for some strange reason. My earliest posts were somewhat hysterical (: I had of course been reading the internet- what a horror show! Turns out to be nothing like the reality. I can't speak for the others one here, but I think I am fairly safe in saying that the old NHS has been unbelievably amazing. From day 1 it really was full steam ahead. Seriously, seriously good. Worldwide data is really problematic, most countries around the world don't have such good free healthcare as us, particularly across the pond, where if you can't afford it, well, the outcome is bad.

All of us on here have been diagnosed at various stage and on various treatment plans, so at least one of us will have the same as your Dad. Do keep coming back and letting us know what's what, now you that you've joined us on this rollercoaster (:

Sally & Milly - scan tomorrow. Cough still there, BUT you'll never guess what stops it in it's tracks (not that we experiment at all ) good old piriton. A seriously old antihistamine. The drowsy ones. Amazing. Clearly, it is due to some post nasal drip for whatever reason. Still driving me mad though grrr.

Millie- I bet that was the best beer he'd ever tasted. Recovery clearly progressing (: As for all at once - give him time, give him time. My incorrable rogue think and says it's 'therapeutic' , well he would wouldn't he (: LOL.

Redski- I forgot until Sally mentioned it about Jej tinkering. Husband shovelled loads down it ! When he felt really sick, off food and fluid- In went feed and about 2 pints of water a day- for some reason really help with nausea, by having something in his ( what's left of) stomach. Stops dehydration too.  It was not 'prescribed' but hey ho after all we've all been through, what was a little tinkering.

Anyway y'all. Long post, and time for bed.

Keeping the faith

Hiltsx

Hi Lizzy, welcome to the 'club'. My Dad (61) was too diagnosed just over a year ago. We are still on this rollercoaster of a ride and as Hilts has said,  once you have the diagnosis, it does feel a little better because there is a plan put in place and you start to feel a little more of a direction you're going in rather than completely lost. We are living in Spain and even though it's 'basically the same system' as the UK, there are slight difftences which I try to share on here.  Please feel free to ask as many questions on here as you like and good luck.

Lee

Thanks Hikts and all, appreciate the advices and encouragement ! Feeling human again today and back to Business as Usual.

That's exactly what I've been having Hilts, sickness and nausea and being off food and fluids - which might be the root cause of it (not enough water flushing all the meds thru).

I don't have a JEJ, was on TPN IV feeds post op which came out day 5 and been flying solo since which is now maybe an issue as another way of getting fluids and nutrition in would be handy on the sicky feeling days !

Good to know it's a similar experience across the board and not just me - thanks all.

Hi

The waiting is awful, I'm sure when you find out what your actually dealing with things will feel slightly better.

My Husband 53 years old was diagnosed in July with squamous cell of the oesophagus,  has completed 2 cycles of chemo, and starting weekly chemo and radiotherapy in 2 weeks then surgery. It is a difficult road to travel, but one day at a time.

take care

t123

Hi Tracy.

Welcome to the oesophageal cancer club (: one you'd no doubt rather NOT be a member of ! 
This board seems to be gaining some fame or maybe infamy ! LOL. 

Seems that a lot of folk are directed here- which is great. All of us on here are but fellow travellers, not medics, just experts in the 'lived experience' , the biggest rollercoaster ride in town.

My husband, 56 yr at diagnosis 14 months ago. Adeno- stage T2, down to Tlb after major nuke and surgery. Now regarded as 'visable disease free' after 9 months of gruelling treatment. I am the onlooker, not the victim- plenty of us on here as well.

We all talk on here about the good, the bad and the downright ugly. All diagnosed at various stages, with various treatment plans. The shock, disbelief, the highs and low of treatment and the emotional storm that is compulsory.So spill as little or as much as you like. I tend to spew out everything that is in my head, a total chatterbox(: 

Chemo is no fun , but in it for the greater good. It is nuclear stuff, but does the job. Read back through the thread, you'll see the highs and lows we all have and still have.

Anyway- you are among people who 'get it' . Ask away. You have probably discovered that the internet is nothing but a horror show- I think we all have, particularly at the start .

Keep the faith

Hilts

Thanks Tracy. I think you're right. 

The verdict is in. T3 N0 M0. Strangely, this terrible news came as a relief. Which is crazy! The plan is in place for chemotherapy & surgery. It's moved incredibly fast to be honest.

There's 250 miles between where I live and parentals. I'm just back home after dropping everything the day after his diagnosis, to go up there. It seems a little ridiculous now but it made me feel much better. It sounds super cheesy but being able to help him choose a good waxed flat cap for when/if he loses his hair was poignant moment. 

I think I read on a post here, you have to except the diagnosis but the prognosis is negotiable (or words to that effect). I rather like that.

Thanks all for your kind words of guidance & understanding. 

L

Hi

Hilts

yes I did find out pretty quick that google is not a friend in this scenario.  You be dead before your first scan if you took any notice of it.  My Husband is T2, N2,  M0.  Never really heard much about this type of cancer and brill he was diagnosed. Can't believe how many people actually have it and the age of people, 

Its a harsh world 

tracy

Hi y'all

Tracy & Lizzie- night owls ;worry or box sets?? (:

Big hand clapping emojis for you both NO M's and as for N2 , well they will soon be smashed into oblivion (: 

So no spread for either of you. The vast majority on here are the same.

Being as common as the rest of us, the treatment plans will probably be similar FLOT chemo x4 , surgery, FLOT chemox4 .

Ours moved incredibly fast. From THAT endoscopy to starting chemo= 5 weeks and in that time all the scans etc and we went on holiday! What else do you do eh (:

Lizzie- it is really strange, but as I said, once you get the verdict in and know where you are going with treatment, I kinda gets a bit 'better' - the plan is some kind of route map. I don't know why it makes it better- but for me it did. The new cap will certainly come in handy! The hair will go, I was seriously in envy of husbands legs!! But it will come back before you know it. 
Tracy- yep, I thought we were rare breeds at diagnosis, but clearly we are as common as muck(: there are LOADS of us all similar ages and that is just on here. When husband had his chemo and op, he travelled through treatment with 4 other blokes, husband being the oldest at 56 !!!. They spent hours comparing and contrasting side effects, war wounds etc. They are still in touch now! Your staging is not terrible news, of course you'd rather not be in this position, BUT , that staging is actually quite good. It is amazing how bad news can also be good- if that makes sense ?

Both - You will have billions of questions- ask away, we are all on here 'experts in the lived experience' (: Read through our past posts to capture the 'highlights' of the last year or so.

Keep the faith

Hilts 

Hi y'all, 

Well the verdict is in . CT Scan on Wednesday. Call from MDT nurses. Scan been 1 reported, but needs another. NO SIGN of any reoccurrence. Nothing dodgy yaaay.

However ( always one eh) he has something called aspiration.  We kinda knew that was going on, but surgeon ringing on Monday to discuss what to do. It will involve a barium swallow to see what is going where, then plans going forward.  So good.

Anyone out there had this? I might post on a new board.

Anyhows  off now

keep the faith y 'all

Hilts