Hi I have recently been diagnosed with a tumor on my esophacus and have been told it is curable with flot chemo and then surgery. Has anyone ever had flot chemo as I'm told it is very strong .
Thanks for responding so quickly to my request. It is very much appreciated. At the moment I feel very positive & want to try & live my life exactly the same as before my diagnosis e.g play golf, have holidays etc. I will have to wait & see how I respond to the chemo & the op which I have been told can take between 10-12 hours. I was warned by the surgeon that I have to count that a year of my life will be lost. I am going to try to get this down to 6 months or so. Once again thanks for your message.
its great you're thinking positive it really does help you get through my approach and it might not be everyone's was just to take each step at the time it is of course difficult to sign a year of your life off however In my situation when I was diagnosed they advised me that they couldn't confirm whether it would be palliative care only so when my tumour shrank thanks to FLOT they confirmed I was then eligible for the surgery which put things into perspective for me anyway .Rest is also part of recovery and I rested for the first week after each chemo session then the second week I wasn't as bad and was at least able to pop to the pub with my family even with my picc line inalso made it to the spa with wife before my surgery.
FLOT is evasive however very effective your body will tell you what you need .
All the best and if you ever need to chat let me know .
Another 4!!!! Persons to add to the ever , rapidly increasing Oesophageal cancer club!!!!!. I have been floating! (LOL FLOT (:) around on here since my 56 yr old husbands shock, out of the blue oesophageal cancer diagnosis in late July 2020. I think I have seen your posts before mikeswife. I mainly post on another board, where there are about 15 + of us 'living the dream' all in various stages of recent diagnosis and treatment.
I tell my husband that he is frankly becoming as common as muck! LOL. What is going on out there! Maybe it is because I am 'tuned into' all things oesophageal, but there are so very many of us on here, and seem to be growing almost daily!
My husband has now completed treatment ( FLOT x 4, surgery FLOT X4) and is for now ' active/visable disease free. Yay. Mikeswife- I have been reading your description of FLOT and would say my husbands experience was about the same. Nuclear stuff, but certainly did the job. He did have anaphylaxis to the 6th oxiplatin though. After the 2 nd pre op FLOT , his symptoms massively improved and he could swallow 'normally'again. 2 PICC Lines, one pre op and another post op, both times did a grand job. Husbands op was 10 hours (keyhole oesophagectomy). He got really fit before hand, they put you on an 'enhanced recovery programme' pre op. The op is mega major, but wow, what amazing stuff. 8 days in hospital, 2 on ICU. I would agree with whoever said a year from the start to feeling back up there. Husband is almost 5 months post op and 6 weeks post final chemo and now he is starting to really feel like he is managing better, still gets very tired. My advise is don't set time limits on yourself, just let your body do the talking.
As anyone got any adice re. very sore mouth & throat. I was advised by Macmillan to take corsadyl twice a day & also soluble disprin in water 4 times a day. Any other suggestions.
I am not very good with drinking plain water. It has been suggetsed that I can add Hi Juice. Has anyone done this & is it o.k. Also finding my morning o.j. not very nice. Has anyone used smoothies for breakfast. Just come up to the 1st. week after my FLOT thought I was handling it well, even went away for a couple of days, but last few days not that good. Managed a 30 minute walk yesterday but, unforunately, could not do the exercises. Any advice will be well received.
. YES, FLOT, has a mega effect on all cells, particularly, in the mouth, some get mouth ulcer, sore throats, and almost everyone gets a foul metallic taste ( hence why the OJ tastes rank)The is the Oxiplatin the 'o' of FLOT, it is the one that causes the tingling. Oxiplat is a platinum compound a heavy metal, Nuclear good in terms of its effect, but pretty foul stuff.
The upside- it does go, meanwhile just eat and drink whatever you can get down. One of the guys on the other board swears by milkshakes, my husband guzzled iced tea and flat coke ( no diet or 0 rubbish, full proper stuff)
I am very surprised you are managing a 30 min walk!!!! Husband was literally splattered for about 5 days after. Don't try so hard, if it is not making you feel better, don't do it. If it does make you feel good then carry on, but either way, you must do only what you feel up to
Hi, I have just read every entry from beginning to end.I have found it so,so helpful - both clinically and emotionally.I am on my second FLOT with the prospect of surgery and follow up Chemo for a tumour in my food pipe.
One question which I cannot see much response for - did any / many have really bad lower abdomen gripes.It seems to have become more acute on my second cycle.
I take it you too have oesophageal cancer? All us victims are on the Oesophageal cancer 'club' board. There are LOADS of us ! tap my blue line to the left of this post and it will take you to the club . Started by RayB . Come on over.
My husband, is the victim, diagnosed aged 56, out of the blue exactly a year ago.
We are now 'out the other side' ( for now eke)Post FLOT , Surgery, FLOT. 4 months since last post op chemo. Visable disease free.
IN answer to you question- FLOT is brilliant stuff for the purpose it was designed- murder of dodgy cells. All of us over on the other board have had excellent results , but with the most spectacular side effects. It affects every cell in the body dodgy or healthy, so yes it will affect all parts of the body in all sort of ways.Gut rot was certainly high on my husbands list ! Dihorrea , constipation. The body will try and get rid of the FLOT in whichever way it can!
The emotional oh wow, my rollercoaster changed on an hourly basis sometimes ! Every emotion under the sun, including tears and lots of laughter .
if you come over, you will see we all chat about everything and anything, sometimes nothing at all (:
LOL - it's okay nicko, we were all 'new' once (: never apologise, we all pop in when our brains are ready to.
it is not a 'formal' club, just a term I invented on this board, as a focus for all of us victims (: to be on one thread, we share the good, bad and downright ugly. None of us are medics or IT wiz's just fellow traveller 'living the dream'
I think we all find our way around blindly ending up in the right place by accident rather than design
sooooo- if you look to the left of this post it will say 'hilts' your says nicko80
if you tap on mine it will take you to 'about me' or something like that ((:: then go into my 'followed discussions' bingo the RayB one.
OR you can search 'hilts' or RayB see what come up then post on that board.
As you will see when you come over there are LOADS of us, multiplying by the day ! I've told my husband he is as common as muck(:
Some are FLOT OP FLOT, other s are nuke when playing up, but not surgical,
My husband was clinical T2, N0, M0 post op pathology was T1b, N0, M0- I LOVE data, helps my brain 'visualise' things
As for what it is called, well we in UK call it oesophageal, Americans call it esphogeal, our house we call it just OC, or more usually the little *********, or little ******** you get the picture.
I wonder if your symptoms and presentation goes something like this-
" just an average guy 40- 55 ish your old, bit of acid and gut rot over the years, nothing that gaviacon can't handle, then you start to feel food getting a bit stuck, go, then 'that endoscopy', which you thought might be an ulcer, maybe a bit of IBS, then bingo OC!
I don t have magic crystal ball skills, just the 'lived experience' since this whole thing kicked off a year ago of how everyone seems to get to these board.
So hopefully see you on the other side ! (Other board I mean)
To all, smile. Be resolute and remember these horrible drugs are giving you a chance to continue with your life and make happt memories which will wipe oubthis period. Love and good luck to you all
