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Oesophageal Patients Association
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Anyone had FLOT treatment?

I have just been Diagnosed with stage 3b adenocarcinoma at the EGJ. I have been offered 8 cycle of FLOT. At which point they will rest 3 months - and if after re-staging with PET and laparoscopy - there was no evidence of metastasis and tumour was sufficiently shrunk/ inactive then surgery wil be considered.

Has anyone else had this treatment? Wondering what I'm in for - it sounds quite daunting but then again, needs must I guess!

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Yes I had it before and after the operation. It’s relatively new and called the ‘magic protocol’ and is supposed to increase the chances of survival considerably. FLOT is a tough triple drug chemotherapy and it’s not easy to get through. But it is doable. I managed to complete the four cycles after the operation. Not everyone does. My top recommendation is to drink as much water (or cordial) as you can every day and I found the best anti sickness medication to be ondansetron but everyone is different so whenever you have a side effect from the chemo ask your care team to see what they have to help.

Good luck with that path ahead if you that many of here have tread.

Paul.

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Thank you Paul. I am supposed to doing 8 cycles prior to them considering surgery - so sounds like I'm going to have to dig deep! I shall try and keep hydrated as much as I can through my JEJ.

Do hope the treatment was a success for you and there are brighter days ahead.

Thanks Lu

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Thanks Lu. 8 cycles is a lot. The effect tends to be cumulative but at least you are having them pre surgery. I’ve had lots of treatment now. It all passes and then begins to fade from memory.

X Paul.

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Summer 2017 I began the FLOT-4 protocol: 6 rounds of 2-week chemo. Second cycle, low white blood count delayed treatment a week. Each cycle: half a day at infusion center plus 2 days w/ portable pump (for 5FU). Week after chemo, 6 weeks of daily radiation. Seven weeks later, surgery (I-L). Exercise helped—3x week up to surgery. Hated starting it some days; always felt better after. Toughest time: last 2weeks radio; hard to swallow anything; heavy phlegm upchuck, middle of night.

Google FLOT-4 protocol, lots to read. Chief difference: all chemo/radio before surgery, when body stronger, tolerates chemo/radio ravages better.

From your place, probably seems like a very long haul. Which it is. But take just a day, a cycle at a time, focus on what’s at hand, can do. Also, in US (Boston), ACS Hope Lodge was a lifesaver—place to stay during radio near treatment, among other folks all in same situation. No false sympathies, lots of tough love. One recovery challenge: gain back some of the ~30 lbs (2 stone+) of muscle lost in 2 weeks post-surgery (nothing by mouth, then clear liquids).

One recurring problem: specialists are great, but only see part, whereas you see it all. To help I wrote a “user’s guide” for (a)esophageal cancer patients—whole bit, from diagnosis to recovery. May be a bit much to take in (40+ pgs) and does focus on FLOT-4, but if a help can provide a link.

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Thank you for such a comprehensive reply. Really most helpful - and I'd like to read your users guide too (forewarned is forearmed) is you can post a link.

It's a horrid disease and I'd like to face it with as much fortitude as you seem to have to managed.

Thanks again

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Sorry for delay. Send a pm to david at wordsmith dot net and I’ll shoot you a link to the PDF of the guide. Another caution: I wrote a blog for friends and family throughout treatment and early recovery (saved email all over the place); the “guide” derives in part from those entries, so it’s more personal than one might wish. Last, my tumor discovered during workup for a minor unrelated issue, earlier than most and before invasive growth and symptoms. I’m hesitant to push my accidental situation, where folks are bravely working through challenges much tougher.

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My husband goes for surgery next Monday in Glasgow

Previously he had ECX But was very ill after the second three week cycle

Not had FLOT at least not yet would be very interested in a download ?

Best wishes to you and yours

Fizzy35

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Fizzy35:

Send a pm to dlocke at wordsmith dot net and I’ll send you a link.

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Hi I had 4 cycles of FLOT. It was not as bad as I thought but report all your side effects if you have them. Worst days for me were days 4&5 after treatment when nausea was bad. Hair loss is significant but not total. Some people hang onto loads of theirs. I can send you the leaflet I did too to compare with Doclocke's. Let me know and hope it goes well.

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Thank you! Yes I'd be interested in reading your leaflet too. I will aim to keep a diary too for all symptoms etc.

Did you manage to go about your daily activities ok during the treatment other than the sickness days. I need to work out how much help I will need looking after my son.

Cheers Lu

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Hi I found it followed a pattern and I felt normal the second week. I didnt work during treatment as didnt know what to expect. You spend along long time at the hosp for the administration part so you will need someone then for your son. If u can prepare food in advance you can prob get by with easy food prep. I could get up and get showered but didnt want to drive the first few days post treatment. I would have someone on standby all thru just in case. PM me with you email and Ill send my leaflet to you.

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There is a lot of really informative stuff here but it illustrates how everyone’s treatment is just a little different. This could be down to a whole series of other factors which the oncologist/surgeon understand. Weight, age, fitness, mental state, family support, size of tumour, degree of spreading, tolerance of treatment etc etc. I am early 60s, very big ex soldier with stage 3 Oesophageal Cancer. My treatment was 4 x 2 week cycles of FLOT followed by a month’s recovery before full Ivor Lewis (8.5 hours) followed by another 4 x2 week cycles of FLOT. The key for me was trying to keep fit and active for mental and physical peace of mind. The first 4 chemo cycles were bearable and I lost a bit of weight (1-2 stone). Surgery was delayed due to surgeon unavailability so in the gap I walked and walked and walked. Consequently the surgery was easier. The last cycle (8th) of my chemo was the worst. Hair out, no appetite a terrible month (lost 4 stone). I am now a very different looking man. I have eating and digestion issues, numb feet and finger ends BUT I am fit and active(10 miles a day) and hugely relieved to be wear I am.

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thank you for your response -

i was fit and healthy prior up to around October of last year (climbing 2/3 times a week and cycling most days) but unfortunately I lost a lot of muscle mass prior to diagnosis this year, and am currently at bottom range BMI for my height - I now have a feeding tube as i am unable to eat anything and am trying to gain some muscle back, prior to the FLOT starting ,but this is proving difficult on liquid 'food'. I guess at least i can continue to be fed this way during treatment despite nausea, so will hopefully be able to maintain my weight.

I intend to keep as fit as i can whether or not they will consider surgery thereafter. Got 3 months after the chemo stops to try and put on weight and get fit - i think i shall walk and walk and walk too!!

Glad that you're still here, and I shall use you as inspiration when i feel like i can't be bothered to get up - keep on marching!

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Well done you. There are some truly inspirational survivors on these pages and we mustn’t forget the unbelievable clinical and volunteer staff who make our survival possible.

Muscle mass and your appetite will return. Just be a patient patient!

Best wishes

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