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 .
sorry to hear about your diagnosis, it is good to hear that it is curable. I am having treatment for stomach cancer which is 4 cycles of FLOT, surgery and a further 4 cycles of FLOT. I had my surgery on 2nd January so am waiting for my next chemo.
One thing to remember is that people have different reactions and side affects but here is my experience. My first cycle I think was a bit of a shock to the system, I started feeling a bit fluey on day 3 and don’t think I’d been eating enough, it resulted in me passing out and a trip to A&E, over the whole 4 cycles this is probably the worst thing that happened, I was pumped with fluids and antibiotics and then sent home. The first was definitely the worst cycle each one got easier after that. My other side affects were, general weakness and fatigue, sore throat, dry mouth,nausea and diarrhoea. The mouth issues were helped by using Biotene toothpaste and dufflam mouthwash along with a baby toothbrush. nausea was eventually managed with ondansatron (I had to ask for this) in combination with domperidone. Diarrhoea was managed effectively with meds given by hospital, some people have constipation instead. I also for some reason had a drop in potassium levels so was prescribed a supplement to take for a few days (they said this probably contributed to me passing out also). The second week of my first cycle I had an allergic reaction where I came out in hives and a rash, I was given steroids and they don’t know what caused it but it didn’t happen again. For the next 2 cycles I had the same nausea etc starting day 3 and lasting for about 5-7 days, in addition on the 8th day on both cycles 2 & 3 I had temperature spikes meaning I had to go to A&E, the first time it went down and I was sent home, the second time I was kept in for 2 days, just as a precaution and given antibiotics, I certainly didn’t feel ill. The only other problems I had was firstly hair loss, kicked in 3 days after 2nd cycle and neuropathy, mainly in my fingers and my legs, I couldn’t touch anything cold and over the 4 cycles it became worse and a little painful, because of this I had my last cycle reduced by 25% (just the docetaxel) it made a huge difference and I sailed through the last one.
Emotionally I found it hard because it was every 2 weeks and I felt that I would just be ok then had to do it again, my 4th was delayed because of the antibiotics I was on and that gave me a welcome break. Within 2-3 weeks of chemo ending I felt great, almost normal. I was able to eat throughout my cycles, the first one I dropped weight but with the next 3 I’d drop a lb or two and then pick it back up in time for next cycle, after chemo finished I was able to gain even more weight to prepare for the loss after surgery and I’m really glad I did.
my pathology report showed chemo had a really good affect, so it was worth it, it wasn’t easy but it was doable, I’m not looking forward to doing it again but I know it’s helped save my life.
chemo is nothing like what I expected, My advice would be to get a hot water bottle, an electric fan, soft baby toothbrush and biotene toothpaste, difflam mouthwash from GP. Eat whatever you fancy, your tastebuds tend to disappear and your mouth feels horrible. Boiled lemon sweets helped. Get a good thermometer, you have to take your temperature all the time. Make a diary of your side affects so you can tell your team, they do all they can to manage them, ring triage if in any doubt. Wash your hands all the time and make sure those around you do too. I am the only person in my house not to get a cold this year! Keep away from anyone who is sick, you are prone to infections. Get the flu jab, get a prescription exemption form from your GP, you’re entitled to free prescriptions for 5 years
I think that is it, sorry for the essay but I for me reading others experiences helped so I hope it will help you too. You could still sail through it and I sincerely hope you do.
Hi, thank you for posting this it's really helped me to understand what my dad may experience. He is having the same treatment of chemo FLOT 4 cycles and I'm worried. Mentally he is not coping well and with the chemo today I'm hoping there isnt too many side effects as with worry he has already lost alot of weight. He had stomach ulcer turned cancerous. I'm trying to get as much positive information as possible I hope your treatment has been successful all the best:)
Sorry to hear your diagnoses and thanks for sharing your experiences.
My dad was diagnosed with oesophageal cancer and started FLOT about a month or so ago. His first round, he ended up in hospital with an infection, hardly drank or ate anything so consultant delayed the next round for a week. The second round was a week past Friday (20/3/2020). He started off not too badly but the past 3 or 4 days has just been in his bed exhausted and hardly taking in any fluids or food, says he feels sick when going to take it. Does anyone else have the same experience with this at all? Any feedback would be great as to how to help him get through it all, especially given current climate with lockdown. Think my mum is really struggling, which is hard as she was a nurse until health forced her to give up her job.
Anyway, thanks in advance for any tips and hope everyone else's treatment is going as well as possible.
I've been through the experience of 4 flots first then surgery then another 4 flots . The flot chemo is very strong one of the strongest I think they're using 4 different types of chemo in one session . I always used to feel sick and exhausted it's a major side effect of the chemo but if your dad can cope with it stick to it it's very good it shrank my cancer in my oesophagus I began to eat normally again after the second lot . I know it's hard but stick to it you tend to know what's coming as you keep having the chemo . My sickness used to last for about 5 days after having chemo and by the second week I wasn't feeling bad at all see if you can have it every 3 weeks instead of 2 it might have your dad a bit of a break in between sessions. I'll be glad to give you anymore info if needed but most of all stay positive it's the only way
I've been through the experience of 4 flots first then surgery then another 4 flots . The flot chemo is very strong one of the strongest I think they're using 4 different types of chemo in one session . I always used to feel sick and exhausted it's a major side effect of the chemo but if your dad can cope with it stick to it it's very good it shrank my cancer in my oesophagus I began to eat normally again after the second lot . I know it's hard but stick to it you tend to know what's coming as you keep having the chemo . My sickness used to last for about 5 days after having chemo and by the second week I wasn't feeling bad at all see if you can have it every 3 weeks instead of 2 it might have your dad a bit of a break in between sessions. I'll be glad to give you anymore info if needed but most of all stay positive it's the only way
