Flot treatment

Hi Chrissyl,

I had 4 rounds of FLOT pre-op too. My understanding was that everybody reacts differently to the chemo and some people are lucky to sail through it with minimal side effects.

My first round was pretty rough, I was absolutely exhausted and had quite a lot of nausea and vomiting. I had a review just before I started the 2nd round and they adjusted my sickness medication and steroids which made the other rounds much more manageable. With those changes I was able to work throughout my treatment with only some tiredness and mild nausea most days. I only ended up having to take day 4 off each cycle after receiving treatment as that seemed to be peak side effect/fatigue day for me.

Best of luck with your treatment. I hope you’re one of the lucky ones that only gets the mildest of side effects. If you do have any problems though talk to the nurses or your oncologist there’s plenty they can do to help manage any problems or side effects you experience.

Kind regards,

Chris

Hi ChrissyL

Everyone is different with Chemo .I was lucky i didn't get nausea,vomiting etc my problem was I felt cold and I did have to stay inside more.I had chemo 2 days every fortnight but didn't get 4th round as Hospital didn't like pre-chemo bloods, although I felt fine.Some hair loss but it came back in darker! Every cloud etc

all the  best Herdy

Hi Herdy

thank you for your reply I am just trying to find out how this treatment can affect people . I know everyone is different maybe I should wait and see how it affects me just a bit scared 

take care ChrissyL x

Hi Chris

Thank you for your reply maybe this won’t be as bad as I am imagining it’s just the unknown. I am glad you got your treatment sorted and your still managed to work throw it . Your message is very helpful .

all the best 

Chrissyl x

Hi

I had ECX chemo which is similar to FLOT - it is the latest chemo for gastric and Oesophageal cancer.  Everyone reacts differently but I found that the support from the oncology team really good in helping me manage the side effects. Don’t hesitate to phone for advice.  

A few things that might help - I drank 2 to 3 litres of water a day which helped and tried to go for a short walk every day. The first week was hard but it got easier the second and third week.  

I found the app Headspace really helped me cope with the anxiety and stress.  There are some free sessions but I paid £10 for the monthly subscription.

I wrote a Blog which you can read - just click on my username.  I also read Blogs by Nick’s Cancer Diary.  If you can’t find them send me a PM and I’ll send a link.

It does get easier once you start treatment. I just focused on getting through each step and doing little things that I enjoyed.

Good luck!

Hi Chrissyl

I had FLOT last year and I produced a leaflet with everything that happened and some tips before starting. I have just put it on my patient blog so anyone can have a look. It is in the form of a booklet for printing off back to back but I may make it a bit more online friendly.

FLOT is less harsh than ECX and has been more effective in trials - it gets rid of the tumour completely in some people. It almost did in my case - my score was 2 out of a possible 4 in terms of how effectiveness of the chemo. It is still a fairly toxic regime though so you do have to look after yourself and take your temperature and look after your line. Have you got a PICC or Hickman/Portal in?

The leaflet can be found at this link. https://oesophagectomylife.co.uk/2019/08/05/confessions-of-a-flot-patient/

Give me a shout if you have problems viewing it.

Hope you find it useful.

Best of luck with your treatment - I hope the chemo is like a ninja - in and out with the most effect but fewest side effects.

Niff xx

Hi ChrissyL, 

Last year I had 2 cycles of 4 treatments of FLOT pre and post operative. I think this is the standard treatment?

Statistically patients receiving FLOT live twice as long as patients receiving ECX. However due to the cytotoxicity of FLOT it was only authorised for use by the NHS in November 2017. And again due to the cytotoxicity of FLOT only 40% of patients complete both cycles. 

As mentioned everyone reacts differently to chemo, and there is no correlation between reaction to chemo and the effectiveness of chemo. 

My pre-op cycle was fairly tough. I lost my hair (which has all come back) was sick (until I went vegetarian), lost my sense of taste, smell, unable to concentrate and lost a lot of weight. After surgery I was told that my first cycle of FLOT had removed all traces of cancer from my main tumour and 6 affected lymph nodes (I was diagnosed T3N2M0). 

My post-op cycle was very hard for me! I had to self inject with Accofil because I got so nutropenic, lost all my hair again and even more weight. I felt very ill. I am still suffering from several auto-immune and other issues caused by FLOT. But I am now in remission and very glad to be here!

If I knew how much damage FLOT would do to me I would still of wanted both cycles, as I prefer to be here moaning rather than the alternative. 

Hi Jac

Thank you for the tip drinking lots of water I will definitely do that . I will read the blogs you have autos do let you hopefully it will help me before I start my treatment. Are you all clear now ???

all the best 

Chrissyl x

Chrissy

I was very lucky and my cancer was found very early.  I got a clear pathology after surgery as the chemo had done its job!  I decided not to have more chemo although I was offered it.  

I have just been abroad on holiday something I couldn’t have imagined I would do again!

When I was having treatment and then surgery it felt endless and just getting through a day was an achievement!

The other tip I would give is to get as fit as possible before the chemo and after it as you prepare for surgery.  I walked a lot listening to music which helped emotionally too.

Good luck!

Hi Jac 

That is wonderful to hear. So glad you have had wonderful holiday. I have had to cancel two holidays never mind don’t think I would have be well enough to go. I have one booked for next April here’s hoping . Going for my pre chemo check on Friday here I go the sooner it starts the sooner it will be over op then chemo again.

keep in touch 

Chrissyl x