FLOT side effects

Hello Jenjen6

I hope you do not mind me replying as I had a different type of cancer to you but hopefully by doing so it will bump your post and someone who is on FLOT will see it and respond.

I had chemo in 2022 and although a different kind I did have similar tummy effects and they can be debilitating. Have you spoken with your CNS  again if the imodium is not getting things under control?- I did get prescribed imodium but was also given other medication that made a big difference. It would be worth asking especially as your next round is due on Monday. With imodium as well there are different ways of taking it that may be worth trying. (timings, doses, before eating etc) 

In the end I was taking 2 imodium -30 minutes before eating- 4 times a day, ondansetron twice a day, buscopan 4 times a day and codeine phosphate 4 times a day.

The buscopan helped with the cramping.

Ondansetron is an anti sickness medication that has a constipating effect whereas previously I was on domperidone which can increase diarrhoea. I believe they are both common anti nausea meds.

Maybe talk to your team to see if any would be suitable for you to take. There are other things that can be prescribed but the above worked for me.

Hope this helps a bit. Also please do give the Support Line a call and speak with one of the nurses if you feel it would help. They would be able to talk you through other possible things that may help and would know more about your specific chemo. The number is at the bottom of this.

Jane

Hi JenJen my mum had stomach cancer not oesophageal but she had FLOT as well. For her at least I would say some cycles were better than others, and there was some variation. Like some cycles the diarrhoea wasn’t as bad and her cold sensitivity wasn’t as bad on cycle 3 compared to 2 etc. Perhaps you could also reduce the amount of fibre slightly in your diet but I’m not sure. When you meet with your oncologist before the cycles (or whoever is assessing you before each cycle) they’ll make sure you’re ready for the next one. For my mum, at the start it was 7 days feeling really bad and then a steady improvement for the next 7. But this got a little harder after cycle 4 and it was more like 10 days bad 4 days a little better. Then again she had 7 back to back and if you’re having 4 and then surgery it might be a little better. If they think you need a couple days break or a dose reduction they can do that to make everything more manageable. My mum had two dose reductions and 2 breaks, and from the scan results in between those times it didn’t seem to negatively impact treatment. I hope you’re feeling a bit better, sending you love and take care xx 

Thank you Nnnnn, your reply is reassuring and helpful, I am now feeling much better with 2 days before more treatment, I am preparing for the next round, I ended up doing a water only day as any food just went through me even with Imodium. As you say it’s a day at a time and a cycle at a time. Good to hear a lower dose did not have a  negative impact on your Mum.

thank you again, best wishes xx

Hi Jenjen

I have been on the FLOT system and have just finished 4 rounds. My consultant prescribed Codine to help with the headaches and the diarrhoea and it worked. The tablets they gave me after treatment didn't work  but everyone is different. Talk to your Cancer team as they can reduce the strength of the drugs which for my last round was much better to get over.

Got the op to remove tumour on 29th December then it will probably be 4 more rounds after. It will always be difficult but they can add it to ease the side effects.

Good luck for the rest of your treatment

Best wishes

Dean

Hi

Just had my first cycle of FLOT - I am 9 days in and the first two days were deffo the worst - going for a walk was difficult. Now however, I feel kind of back to normal again. No serious side affects and feel kind of ok. Hope your operation goes well and would be useful to know how quickly you recover.

Good luck