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15 posts since
20 Jun 2021
Hi All – hope things are going well for you all. Had 3rd FLOT on 16 July and feel totally wiped out – can hardly get out of bed and don’t feel like eating at all – tummy sore and although not sick – I feel nauseous all the time. How did you all feel as you got further into the chemos?
Andixx
192 posts since
1 Apr 2021
Hi Andi
Sorry to read your struggle.
I’m.having chemo for breast cancer and also find about day 6 I struggle to eat and drink. Here’s some things I’ve found helped.
Porridge with milk once ready sprinkle with brown sugar and pour cold milk ontop it will help fluid intake
Cheesy mash potato is easy to eat
Batchelors macaroni cheese
Custard
Drink wise I have chocolate milk not straight from fridge has been a godsend.
Also protein shakes.
If you can find a couple of things then just stick with them to start thats what I do then as my strength returns I increase foods in readiness for my next session.
Hope this helps
Louise
1395 posts since
5 Feb 2018
Hi Andi and thanks for posting
I am sorry to hear you are undergoing treatment and not feeling very well in yourself.
Every one is different on treatment and the side effects people get will vary. Do let the nurses and doctors involved in your care know how you are feeling so they can also assess you and change medications such as anti sickness for you. Sometimes it can be trial and error switching between different medications to find the most suitable one for you.
As Bellelouise has suggested sometimes eating little and often can help with the nausea and eating foods that you might fancy. We also have some other tips on our web page here.
Tiredness and fatigue is another common side effect that affects most patients undergoing cancer treatment. Once again do let your team know how this is affecting you in case they want to check blood levels and make sure you don’t have low blood counts that need treating. We also have information and tips on things that may help here.
Listen to your body and take each day as it comes. Most people find they get to know which days they need to rest and take it easy and others where they feel much better and are able to function more normally.
I hope this is some help but please get back if you need to or you are welcome to call us on 0808 800 4040, Monday to Friday 9-5 if you would rather talk things through over the phone.
Hope you are feeling brighter soon,
Take care
Naomi
15 posts since
20 Jun 2021
Thank you – will try xx
15 posts since
20 Jun 2021
Thank you for your reply – will let the team know how it’s affecting me xx
261 posts since
28 Jul 2020
Hi Andi,
I just caught your post on the ‘Oesophageal cancer club’ board
Come over and join us merry bunch of OC warriors(:
We are all ‘world experts’ on the ‘lived experience’ of the delightful FLOT!
My husband is the OC victim, me = the chatterbox wife (:
After a year since ‘that endoscopy’ and diagnosis- out of the blue- we are out the other side ( for now)now post op and FLOT. He is visable disease free.yay
What you have described is exactly how everybody that posts has felt. Utter shhheite. Indescribable sheeeite.
FLOT is very good at what it is supposed to be doing- murder of cancer cells, but it is absolutely nuclear!
you are probably feeling like it is Groundhog Day. Yes, it is cumulative as are the side effects, BUT you have ONE MORE to do. Then you will be finished. Don’t know what the plan is for you, but if you are on FLOT, OP, FLOT then you will certainly recover from the first lot before you have the second lot.
All you can do for now , is get as much food and fluids down as poss. Speak to your unit about the nausea, there are lots of different anti nausea combo’s they can offer. The gut rot is compulsory I’m afraid ):. The body is trying to get rid of the chemo any which way it can and also although FLOT murders cancer cells very well, it also interferes with non cancerous cells, to give you all sorts of weird side effects.
come on you are almost there!!
2 weeks, where you can stay in bed if you want, deal with it as best you can
Best wishes
Hilts
59 posts since
14 Apr 2018
Hi,
Sorry to hear you are struggling. I’m having chemo for breast cancer and am on cycle 4 of 6. I had a terrible time on cycle 2 and was consistently nauseous and vomiting all the time. I spoke to my Dr about it and they gave me something for the sickness and nausea. It stopped the vomitting but not really the nausea which has been pretty consistent throughout for at least a week after my chemo.
Cycle 3 i was so tired and sleeping most of the time. However this cycle i’ve had few symptoms other than the odd headache and needing a bit of a nap in the day. I keep waiting for something to happen but it hasn’t so i’m just making the most of it.
I think every cycle has been slightly different for me but some things that have been consistent and it’s what i’ve also heard from others. The rash I had after my first cycle has never returned (thank goodness), but I do now have random pins and needles in my hands for the first time.
It’s always worth speaking with your Dr / nurse if symptoms are becoming challenging and they can hopefully do something about it.
Wishing you well.
15 posts since
20 Jun 2021
Hi Hilts
Thank you so much for your positive response – good to hear from others with the dreaded OC – and yes – I FLOT OP FLOT!! Also really good to hear someone who has come out ‘the other side’!! Seems a long way away – but I’ll do it
I’ll keep in touch and great about your hubby – can he eat now – I know small amounts – but is it OK??
Andi x
15 posts since
20 Jun 2021
Hi – I agree – each cycle has different effects. I’ve just been told that my bloods are bad so chemo postponed for a week!!
261 posts since
28 Jul 2020
Hi Andi,
YES YOU WILL DO IT(:
I will apologise first up for saying to join us on the other board- you already have!
you are probably in some sort of twighlight zone, Groundhog Day thing, me , just a chaotic brain (:
Yep, ******* up bloods are par for the course, shows it is doing what is should be really, by smashing apart cell division. 1st of all husband had duff white cell, put him on something called filagabin….. or something, sorted, then his platelets played up and then his clotting, he didn’t have any delays, but sailed very close to the cut off on many occasions (:
Simple as it sounds, but how it makes you feel- only one way to describe it really utter *****.
BUT remember this- all this will be done, finito. It is time limited. like I said to husband , when having the post op- you have 8 weeks to do, then done, finito, end of.
Somas awful as it is now, there is an end in sight…….you CAN do it.
Hilts
15 posts since
20 Jun 2021
Ah Hilts – thank you so much for your encouragement- means a lot. I’m widowed so live alone and have too much time on my own thinking – must get more positive thoughts
on the plus side I have a week of feeling better and can hopefully get some food and drink down
OF COURSE I CSN DO IT XX
261 posts since
28 Jul 2020
YES YOU CAN !
I noticed I failed to answer your question on eating.!
I would say that it is pretty much back to before all this kicked off.
After the 2nd pre op. Chemo he could swallow again, without gagging it back. He really made the most of that (: when he felt up to it and they sorted the nausea out (:
Husband has always enjoyed his food, some might say a little piggy (:. He now has to watch that he doesn’t stuff his face, but he is certainly on a full plate. He does watch the carbs though, too much of that and he knows about it with dumping, so a big Sunday lunch all the trimmings, just maybe 1 potato.. But he is most pleased that he can now swig back 4 pints!!!! Before all this kicked off he could only manage about 3 due to the regurgitating (tmi?)
A couple of the others on the other board who are just out the other side are also finding just how good they can eat , no one is on mushed stuff, all back to previous habits. Most of them , like my husband felt like absolute sheeeite while on chemo, just get what you can in when you can.
As for thought and to much time to think. Oh wow, where do I start (: but rest assured you are in the majority. All of us both victims and watchers have had several meltdowns, wobbles etc, but that is fine, being human. TBH the one and only thing I found helped me was distraction, anything, just not it! But you know it is okay not to be okay (: I am not one for saying things like ‘be strong’ or ‘coping’, what do those word actually mean and look like in reality? I feel now and have all the way through that we have “just got on with it- what choice do we have”
You WILL be okay and get through this
best wishes
Hilts
15 posts since
20 Jun 2021
Wow Hilts you’ve just made my day – I also LOVE my food – the thought of not being able to have a plate of food was very daunting. How long ago did you hubby’s post op FLOT finish.
I’m very lucky as have great friends an family – they think I look like a cross between ET and a Ninja Warrior with no hair – luckily I get NO tea and sympathy
Andi xx
261 posts since
28 Jul 2020
Good glad to cheer you up.
Post op FLOT finished on 23rd March.
but rewind – op was on 16 th December . 2 days post op he was on coffe & free fluid, day 3the delightful ‘textured chicken’ – first food,gross, but it was a start (: , discharged day 8 xmas eve, was on 3 mushed meals and the delightfully delicious overnight Jeg feed ( post op you will have a tube that exits just above the belly and you have it for a fortnight post op overnight, to keep you calories up- it stays in until you have finished post op chemo, which was very useful- I’ll return to that later).
Xmas day he had a full dinner- so 9 days post op, mashed with loads of gravy and on it went by middle of January he managed a pie!! . TBH he was back on full meals by the time the post op chemo started. But of course the nausea and general hideousness of the way chemo make you feel meant that his appetite was shot- this is where the jeg tube came in handy, although he’d stopped the feeds 2 weeks post op, he started them again and chucked about a pint of water a day down it, as funny, he felt better and less sick when he did this. We weren’t ‘advised’ or anything just did it, you get the the point where you think ah f’ it (:
By a month post last chemo he really was back to full plates & pints (: and hasn’t stopped. One of the guys on the other board is about a month post last chemo and he recently went out to a restaurant and had a huge fish platter- so yes, you will get there too(:- doesn’t feel like that at the mo though!
As for the hair, as I told my husband the Yul Brenner look is on trend(:.
His took about 2 months to come back properly and he had it cut in June, so back to previous. The ‘skin tone’ also comes back, he was a ghostly grey white colour, but back to usual and moved forward about the same as hair return.
You seem to have a healthy sense of humour as well. Tea and sympathy you don’t want, but a good laugh is something you definitely need. Even during the most challenging times we managed to laugh, usually at the most inappropriate things (:
So , keep the faith
Hilts
15 posts since
20 Jun 2021
Oooo Hilts – that is just sooooo encouraging – I actually didn’t think I’d ever be able to eat a ‘proper’ dinner again!! I’m totally amazed at how quickly your hubby has recovered – you must both be thrilled – at this stage I feel it will never end!! As my last chemo has been postponed a week I feel really good and can hopefully eat well over the next week.
I’ll let you know how I get on – I feel so much better after talking to you – you’re a star – thank you
Andi xx
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