Hi guys. Sending love to you all. We have just lost my mum to this cancer after only 6 months post surgery. My advice push for the chemo after and push for all the scans you can get after too. If this had been possible for mum then she might still be here. Xx

Hi

I too would advise, push push push.  My brother had been visiting his GP since March with fears of this dreadful cancer and was pooh poohed and told it was acid reflux.  Eventually at the end of August he had an endoscopy and a biopsy.  By this time he had lost 1 and half stones in 6 weeks.  He was rushed into hospital on 20th September, and passed away on 25th October without having had any treatment.  I could go into far more detail but would not wish to distress anyone on this forum.  It was obviously too late for him and I find it extremely upsetting that in spite of him doing the right thing and going to his doctor, (and advising the doctor that his paternal grandfather had died of the same disease) he was sent away and not seen to in sufficient time to give him a few months quality of life.  

Make a nuisance of yourself, push and push for scans and tests and treasure every moment you have xx

Hi Redski, my Dad has been increasing his intake of fruits and veg by making lots of smoothies (my Dad hasnever been one for much fruit and veg)- investing in a blender is a good idea (we bought a nutribullet and a cold press juicer). This way, you'll be getting plenty of goodness and they're quite easy to swallow - also you can pick what certain foods you're wanting to increase on,- my Dad has plenty of bananas to increase his potassium. Also my Dad has started to have protein bars most days. Our oncologist advised to try and eat very small portions but more often.

Lee

Thank you so much, both - that is very helpful. 

I'll dust off the blender and add some smoothie ingredients to the weekly shopping list as well as some high fat and high protein foods - thank you.

Not quite as tall as you BFG, but at 6' 2" and 100kg it's insightful to know what worked for you at keeping weight up.

Thank you.

Hi Redski,

As.Bfg said it's a case finding what suits you. However smoothies are a great idea. My husband was fortunate to be able to eat, it did get better after 2nd cycle. I cooked meals as normal but made more deserts. Thinks like banana and custard are easy and good. Fruit crumble etc.

Porridge with blueberries/raspberries etc.

Also added garlic and ginger to stir fries. Noodles and pasta seemed easy to eat. Fruit and veg but also cream cakes and high fat foods. It also depends on your starting point. My husband was on the lower side of his BMI but managed to gain weight.  He ate snacks like fruit and nuts, crisps and crackers inbetween meals. Drank whole milk, hot chocolate, Horllicks. Also had peppermint tea and lemon and ginger tea during chemo. Honey and lemon too.

He did feel nauseous at times but anti sickness tablets helped a lot. Chewy ginger seemed to help. He did wear the anti sickness bands on his wrists  (from the chemists).

A rainbow diet is a good way to look at it. Getting some fresh air helped and even a short walk made him feel better. 
I hope this helps.
Keeping the faith 

Milly

This is so helpful too Milly, thank you. I hadn't heard of the bands from the pharmacy but have now bought some to hopefully help me in Round 1 this week - so thanks for mentioning that !

How is everyone getting on ?

Hope you and yours are all well

Hi Redski,

I'm pleased the info helped. A friend whose an ex nurse suggested the bands for my husband, worth a try. I presume that you've got a thermometer as you will need to check your temperature once a day. Something else I thought of was my husband used a heat pad on his throat to help with the side effects of oxaliplatin. Also he used Aveeno to help with dry skin snd Diflam for mouth ulcers. The best thing to do though is to speak to the nurses about any side effects and they will advise. Diflam if you need it can be prescribed.

My husband is still in step down and it feels like I'm tempting fate if I I say too much. So .... so far so good. 

All the Best

Keeping the faith 

Milly 

Hi Milly,

I'll take so far so good. :-)

Well remembered in the thermometer, I forgot about that.

Redski - infection is probably their no 1 concern,  and I bought a cheap and cheerful digital thermometer from an online well known retailer and it did the trick in monitoring. 

Another anology from me is that you are about to enter a forest of potential symptoms and you will get out the other side. You may come up against a number of different ones,  but it's a case of being aware for what they are IF you do. Ray and I for example have very different reactions to the white blood cell booster jabs. 

You are given different tablets to counteract the major symptoms,  but share your symptoms with the team - if something isn't working, there are often alternatives.

Yesterday was our first lunch in our back garden,  and we indulged with a bottle of bubbles called Carpe Diem. We toasted you all.  'nuff said.

Bfg

Cheers bfg... and everyone else.

I am at the hospital right now...my Dad is inside having his second covid jab. The roll out is a bit slower here but nicely catching up.  For a while no one seemed to know whether a cancer patient could have the vaccine but then we got a call and said my Dad was fine to have one particular vaccine- I think it's the maderna one! (Not sure if that's spelt correctly). 

Lee

Hi Bfg and everyone,

Love the bubbles! Perfect and very true! 
 

Hope all that are able to are enjoying this lovely weather over the bank holiday.

Keeping the faith

Milly 

Hi Redski

When i was on flot i drank 2 litres of milkshakes every day and more or less maintained my body weight pre op , as my appetite for other foods was very poor ,i know others who have done much the same , above all get plenty rest on the home days i know it's boring but it's a must do and pays dividends in the long run , take it easy

Regards

Douglas

Thank you Douglas, that sounds like a good tip too. Do you mean the thick American style ice cream milkshakes like you'd get at McDonalds, but ASDA's version ... or the flavoured milk you get at ASDA ? I had a quick look online, but there's a lot of choice ! Thank you.

Digital Thermometer from well known, online retailer purchased - thank you for that tip too.

All set to start tomorrow.

Lastly, how long does each FLOT session take ? I forgot to ask when I was there for the blood checks, today.

Thank you.

Thank you Douglas, that sounds like a good tip too. Do you mean the thick American style ice cream milkshakes like you'd get at McDonalds, but ASDA's version ... or the flavoured milk you get at ASDA ? I had a quick look online, but there's a lot of choice ! Thank you.

Digital Thermometer from well known, online retailer purchased - thank you for that tip too.

All set to start tomorrow.

Lastly, how long does each FLOT session take ? I forgot to ask when I was there for the blood checks, today.

Thank you.

Hi Redski

A bit longer than usual for the 1st one as they will take you through the side effects and the do's and donots.

Then about 4 hours max for the main ones (1hr and 2hr, with flushes in between).

Then they hook you up to the pump and send you home. 

My next is Thursday. 

Hi Redski

I  am a cheapskate and just bought the asda or tesco flavoured milk which i liked and still do , the flot is a long day as you are taking in around 3.5 litres of fluids my visits were usually around 36 hoiurs but the process itself was pretty straightforward and not uncomfortable , i am sure you will find it the same , nothing really kicks in until the following days and by day 12 you feel almost back to normal just in time for round two , the four cycles then become quite routine and pass by in quick succession , it's not that bad , take care and keep us posted on your progress.

Regards 

Douglas

Morning Douglas !

Not cheapskate at all, I'll be doing the same thing ... just wanted to make sure I was buying the right thing, so thank you.

Excited to start today as just want to begin nuking it !

Thank you for your help and insight on it all so far all.

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

Hi Redski

10 mins to go before they fit the 5FU pump. 

I just cuddle the bag that the pump is in  - and also ensure the cat doesn't play with it.  Showering is easier to avoid until its off. 

The medication helped me with side effects and then people react in many different ways, especially coming off the steroids and the blood boosting injections start - for me it was just transient moments of tiredness and feeling rough.  It was a case of going with the flow and giving in to it with the knowledge it will all pass and your body gets to improve so you can do it all over again!

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 ?