Gullet (oesophagus) cancer

A support group for anyone affected by gullet cancer (also known as oesophageal cancer) to come together, share experiences and ask questions.

About to start FLOT

Jayneyhorsey
Posted by

Hi there everyone, this is my first post, having just lurked on here since being diagnosed on the 28th November with cancer. It’s seemed to have taken forever to get to this stage but I have my start date for FLOT on the 20th February (my birthday lol ) with an appointment this Friday to get my picc line put in first. Bit of history, I’m a 48 year old lady, fit as a fiddle (apart from this), work and have 4 horses which I keep and look after from home. Never had a days sickness in my life, am a complete wimp and a wuss where anything medical/hospital is concerned so am absolutely terrified starting this journey. Just wondering if any of you brave, lovely people can give me some advice on what to expect. So far I’m fully intending to keep working, competing and looking after my horses, is this just a dream?

thank you in advance, love Jayne xx

Luv Chox
Posted by

Hi Jayne, Welcome to the forum, this community is full of lovely folk happy to pass on tips and advice. My own knowledge of FLOT chemo is through my husband, he was diagnosed in June last year and it sounds like his treatment plan is similar to yours. It is to your advantage that you have both youth and fitness on your side. As I am sure you are aware the effects of FLOT are accumulative, my husband tolerated the first dose really well, only felt tiredness on days 6,7,8. I am sure you will be given all necessary info paperwork by your hospital team detailing any meds you may need, to alleviate sickness, constipation, trots etc,(sorry) It's also necessary to drink plenty of water and just listen to your body really. Also, if you are sharing a loo in the days following chemo always make sure the lid is down when you flush and flush twice, FLOT is really toxic and this just protects family and friends. The day of chemo itself can be very long so take some snacks for energy, listening to music helps pass the time, a laptop or book is good, my husband used to take earplugs because if it is quiet and warm he can fall asleep anywhere! Wishing you all the best for the 20th and hope you get to celebrate your birthday in style.

Good luck, any questions, ask away XX

The smallest act of kindness is worth more than the greatest intention
ChrisW5
Posted by

Hi Jayne,

Sorry to hear you're getting a picc line for your birthday, I got a PET scan for my birthday a year and a half ago! I don't know if they're different names for the same thing but I had a hickman line for my FLOT chemo therapy. Having the line itself insert isn't too bad, they use plenty of local anaesthetic so you shouldn't feel a thing. It also has the benefit that you don't need to have anymore needles for blood tests, the nurse or phlebotomist can just use your line for the blood draw instead.


Peoples reactions to the chemotherapy vary widely so its difficult to know how you'll feel, some people have a bit of tiredness other feel much worse. I would definitely recommend having someone on notice/back up to support you looking after your horses, especially for the first cycle. For context, I was 32 when I had my FLOT chemo therapy so was fairly young and otherwise healthy. My first cycle was fairly awful, I was really tired and nauseous, particularly days 3-5 after chemo. I had a review with my oncologist just before my second cycle and he adjusted my steroid doses and nausea medication which made later cycles much more tolerable. I work an office job as a software engineer so not something very physical but I was able to work throughout my treatment and only took the day of treatment and day 4 after chemo off. Light exercise, like walking and looking after chores like shopping and cleaning were all manageable for me while I was having chemo. I was able to carry on fairly normally during my pre-op treatment so providing your only have a mild reaction to the FLOT there's a good chance you'll be able to care for your horses through your treatment.

Kind regards,
Chris

Lou1972
Posted by

Hi Jayne

sorry to hear of your diagnosis, I think waiting for treatment to start is such a difficult time, the fear of the unknown is awful. 

I was diagnosed with stomach cancer which follows the same treatment plan in August 2018 aged 46 and very healthy, gym goer etc.  i had 4 x pre surgery FLOT and 4 more scheduled after surgery although I only managed 2. 

my first cycle was pretty bad but I don’t think I ate enough or drank enough and became dehydrated, so my tip is to eat as much as you can tolerate and drink at least 3 litres of water to flush it out. I ended up in A&E as my potassium levels dropped and I fainted, A few days later I broke out in a body rash and had to have a gp come out to give me steroids.
Everyone reacts differently but remember it’s a very tough regime so don’t put too many expectations on yourself, for me I couldn’t work, I would feel the affects from day 2 to about day 11 and I felt very weak. Always on day 7/8 my temperature would spike and I’d have to go to A&E for antibiotics and was admitted to hospital twice because I was neutropenic (low white blood cells so no ability to fight infections). My 4th dose one of the drugs was reduced to 80% and that was more manageable. I started to lose my hair after the second cycle although it didn’t fall out completely, I did shave it and it started to grow back during the 4th cycle.

The cycles post surgery were much harder than I expected and had to be stopped but that is quite normal only 40% of people finish it all. For some reason having chemo made my potassium levels drop, so I was prescribed supplements and would have to have blood tests a few days in to each cycle to check my levels (thank goodness for Picc lines!) my mouth became sore and I was prescribed difflam mouthwash which really helped, I also used biotem toothpaste for dry mouth and was given drops to stop oral thrush. 

I found I was able to eat and keep my strength up during thr first 4 cycles although my tastebuds were shot to pieces I couldnt taste much but certain foods I enjoyed. I suffered with neuropathy in my fingers and feet and this was particularly bad during cold weather.  I was given injections to take for 5 days to boost white blood cells, these gave me headaches and body aches. 

so my own personal experience with FLOT wasn’t good but I managed it and yours could be totally different where you manage to work and look after your horses but don’t beat yourself up if you can’t. Hygiene is super important so keep yourself away from anyone with coughs and colds etc as your immune system will be very compromised, I was told to avoid crowds. 

the one thing that surprised me was how quickly I felt I bounced back after chemo had ended, within a couple of weeks I felt stronger and was able to eat and pack weight on ready for my operation. So whatever you experience just keep in mind it is temporary, there is light at the end of the tunnel. 

i really hope it goes smoothly for you manage to keep doing your normal and beloved activities. Keep a note of any side affects you have and let your team know so they can give you the right treatment, they really are there to help. I’m sorry if I’ve not painted a very positive picture of my journey but it is doable, I got through it all and am enjoying my life once again. 

good luck, you will be in my thoughts x

Lou
Jayneyhorsey
Posted by

Well hello Luv Chox, ChrisW5 and Lou1972, thank you all so much for taking time to reply to my post with such fantastically detailed posts   Please don’t apologise for telling it how it is, that’s exactly what I wanted, the facts, no point sugar coating it!  My oncologist did say last week, there’s just no way of knowing what/if/when/how severe the side effects will be until I start. He did say I have age and fitness on my side which should hopefully stand in my favour. Unfortunately I don’t know how I’ll get on with Lou’s advice about keeping hydrated and eating. I’ve been unable to take any solid food since about mid December and unfortunately can’t stomach (as in they make me wretch and sick, the meal replacement drinks the nutritionist prescribed for me (scandishakes and nutrisips). I’ve been muddling thru on home made, very milky smoothies, ice cream, high fat yoghurts, mousses etc and up until this week I had been able to stomach Heinz tomato soups !  I’m also struggling with getting enough water in too and for some reason I’m going off tea and coffee. My surgeon seems quite confident that the chemo should start shrinking the tumour fairly quickly and my oncologist did say, he’s known some people find an improvement in eating in the first 10 days although he can’t promise as some folk don’t seem any difference in swallowing at all. I’m just hoping I’m in the first category. 

Jayneyhorsey
Posted by

Sorry guys my post cut off before I’d finished lol !  Anyway just wanted to say thank you all so much, it really does mean a lot that you’ve shared your stories with me.  Obviously it goes without saying I hope your hubby is well now Luv chox and that Chris and Lou are both well too. Keep smiling and I’ll keep you all posted after the 20th when I start

lots of love to you all Jayne xxx

Luv Chox
Posted by

Hi Jayne, My husband had the operation in October and is recovering well thankyou, also, have you tried drinking full fat coca cola, don't know why, but even when hubby felt at his worst, he could drink litres of the stuff and the calories came in handy lol X

The smallest act of kindness is worth more than the greatest intention
Jayneyhorsey
Posted by

Hi again Luv Chox, oh that’s great news for you both, super pleased for a happy ending for you both. My op is planned for late May all being well   I could certainly try the cola, I used to drink lots of fizzy mineral water but had to switch to still as fizzy seemed really hard to get down and was making my already horrendous acid/heartburn worse, I’d be up to try anything tho so thanks for that tip. Did your hubby find the tumour responded and shrunk once he started flot if you don’t mind me asking? Sorry to ask just I’m desperately trying to avoid the threat of a feeding tube!  I’m 5’10” and seem to be maintaining around the 12st give or take a few lbs on my current homemade regime so I’m really banking on the chemo improving my eating  if it can   Lol, apologies for all the questions   Love Jayne xxx

Luv Chox
Posted by

Hi Jayne,

Before and during chemo he could eat normally so it is hard to say when the tumour started to shrink, but yes the scans showed the chemo had been successful and the tumour was smaller. But it is true that some people who have problems swallowing prior to chemo notice an improvement fairly quickly. As for the feeding tube, hubby had one inserted during his operation and although initially he wasn't keen, it takes the pressure off trying to force yourself to eat, knowing that he was getting enough nutrients etc to sustain his recovery took away some of the stress. XX

The smallest act of kindness is worth more than the greatest intention
Jayneyhorsey
Posted by

Morning Luv Chox, ah I see, I was diagnosed T3N1M0 after pet ct and have had great difficulty getting any solids down for a while now, hence why I’m hoping it improves with chemo. They were talking about, is it a gastronasal tube? now, which is what I’m trying to avoid if I can, I’m not too bothered about the tube they fit at surgery, like you say, I’m sure it’ll take the stress out of getting enough nutrients whilst recovering. Thanks again for your message and have a great day xxx