Hi Redski

i used to start my flot on a wednesday and it was usually anyrhing up to eleven thirty pm on the thursday before i left the hospital , trust me at that point you will be feeling fine , the steroids they get you to take prior to admission made me ravenous and i ate everything that they offered me , another tip i found to combat the affect on your taste was sugar free sweets i bought bags off them and took them in with me along with the flavoured milk , you don't need luck just a bit patience , take care and keep us posted

Regards

Douglas

Hi all, 

I'm still on the diagnosis path but thought I'm far enough along the journey to pop my head up and say hi. 

Firstly, reading this thread has been really helpful in my understanding of the possible (and various!) next steps I can expect. Thank you.

I'm Jae, a 37yo man from Kent. A few weeks ago I began having issues swallowing foods. Two weeks ago I contacted my doctor who immediately put me on the "cancer path" as she so unreassuringly put it (I'm very grateful she did though!). Last Thursday I had my gastroscopy where the doctor was rather surprised, given my age and lack of other symptoms, to find a large tumour taking up 3/4 of my oesophagus and many biopsies were taken. Had a CT scan yesterday and now I'm awaiting my Multi-Disciplinary Meeting on this coming Monday in order to find out the firm diagnosis and next steps.

I feel like I'm handling it a lot better than my husband who is extremely stressed about everything (especially what he considers a lack of information whereas I think everything has happened very quickly and I'm being as well-informed as possible by the NHS). 

As far as I see it right now, I've got 5 more days of blissful ignorance (except for the ever-present liquid diet I've put myself on) until the real rollercoaster gets going. 

Thanks again for this thread, it really has helped me know what questions to ask and what sort of treatments are likely.

Hi Jae and welcome to the forum-a place where none of us want to be!

We are based in Spain so our experiences may differ slightly to everyone else on here who is experiencing treatment in the UK but if we can help you in any way just ask and good luck. 

Lee

Hi Jae, sorry to have you join but you are in a great place to throw any questions our way.

Looks like you are in the same place as I last October. Gastroscopy on a Wednesday,  ct scan Friday, mdt the following Wednesday with plan for next steps.  It'll be a lot of what ifs for a couple of weeks whilst they investigate.

The only other thing I'll say for now is you will have a great team behind you at the hospital - my point of contact from the start were a pair of upper gi nursing specialists and they have been fantastic in responding to questions and working the occasional miracle. 

Cheers for now,  bfg

@Redski- sorry,  my timings might have been out - I'm currently running at 4 hours with an hour to go for my flot today. :-)

No worries at all BFG, appreciate the swift responses and advice - it's all very helpful !

I was 6 hours yesterday, they said the 1st is longer as lots of pre flight checks, info to bombard you with etc. but it all seemed to go well ... although there was a moment where I felt unpopular as they turned the Air Con off in the bay whilst I had the Oxy infusion because of the possible cold reaction and I then felt bad for the other 3 patients on the bay on other treatments as it got stuffy for them !

They said cycles 2-4 will be 4hours-ish, which sounds similar although I have an additional hour for the infusion of the Avelumab on the immunotherapy trial.

Jae, it my be worth you asking your team if you're eligible for this too. It's standard FLOT but they add an immunotherapy treatment at the same time as a part of the trial. My oncologist and surgeon are running the trial, but I think it's open for all to apply in our situation - so it's worth you asking them about joining the ICONIC trial if you're interested. Also, do it upfront as it will save some re-scans later down the line, which I had to do repeat CT scan and repeat endoscopy for as they need them to be analysed in an additional way which wasn't done the first time around for me. Just thought it worth mentioning to you at the start of your journey incase you're interested.

Douglas / BFG, I feel fine today apart from this blasted bottle for the 24H 5FU infusion ! Sleeping wasn't fun as I was worried about snagging the line and where to put the bottle ! Can't wait for 5pm today to have it out. Any tips on how you found best to sleep with it ? Also, showering with it doesn't seem like a sensible thing to do ? so am just waiting till later when it's removed but not a great feeling on a 21oC day in London hot & sweaty, yeesh.

Im guessing side effects may kick in, in a few days - I've seen some people say Day 4 so I'm just waiting to see now ...

Been given anti sickness tablets to take morning and lunchtime, still on the Omeprazole too, with some injections to give myself (joy) from Day 5 to boost white blood cells for 5 days. Lots to take in and remember !

Douglas, thanks for the sweets tip - found some Pear Drops which are my favourites in sugar free at Holland & Barrett so will order those up - thank you for the milkshake and sweets tips, much appreciated.

How's it going in the chair today BFG ?

I used yesterday to do lots of Life Admin on the laptop, chasing up refunds, sorting out emails and ordering the Wife's wish list of garden furniture for the summer !

Lee, we might be similar to Spain today in heat with London having a high of 21oC ! Hope you and your Dad are both well

You've made it sound poetic and not so bad with 'transient moments of tiredness' - thank you, that made a smile !

Well done on finishing the session, you feeling OK from it ?

Yep - generally do for a couple of days other than an increase in grouchyness which is probably me.  I get the sensitivity to cold but it tends to be more at fridge temperature that I notice anything.  It wears off though.

Just be aware though that this is just me - each of us had there own roller coaster journey.  

I've been a bit cranky today too, but not sure if that's just me or the treatment

Is the cold sensitivity from the Oxy part of the FLOT ? They scared me with the talk of throat spasms etc from cold drinks so I'm completely avoiding them as it sounded scary ! Are you OK with cold drinks then BFG ?

I noticed a general increase in pain in the fingers when reaching into the fridge so air on the side of caution and don't go into the freezer or take ice-cold drinks or ice cream. It's just the routine I got into and it dissipated between cycles.

And yes it's the oxaliplatin part of flot - I get told off for googling stuff like this.

I also do go slightly husky when I talk.