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.
It was really interesting reading your post as my mom is going through chemo at the moment but dont know which one.
She had bowel cancer and had it removed and then at christmas we were told it had come back to the lining of her stomach, shes 75.
Shes started her chemo on Wednesday and was ok until yesterday, shes now very tired and weak, i was wondering whether this is normal?
She had chemo a few months ago but the 2nd cycle didnt agree with her and was in and out of hospital, she was put on steroids and had low potassium, she was extrememly weak, thinking about it i think we were lucky that they gave her a 2nd lot of chemo, her hair is falling out now but shes not too worried about that, its just the tiredness
sorry to hear your mum is facing more treatment, it’s so unfair. Is this a new cancer or is this the bowel cancer has spread? Just asking because I think the chemo regime would be different.
There are different regimes for stomach cancer, FLOT is fairly new and harsh and not everyone completes it. However it’s perfectly normal to be tired and weak after any chemo, I had my 2nd cycle since my operation last Tuesday, even though they’d already reduced the dose I had a reaction and it was cancelled, I didn’t even receive half of it and yet I have been unable to leave my bed since, I’ve needed help getting up for the loo and for the first 5 days, slept almost solidly. Yet I know someone else who isn’t affected anywhere near as much, she’s sailing through, I guess we’re all so different. I’ve suffered with low potassium each cycle,I’ve needed fluids for dehydration, I’ve been neutropenic where your white blood cells diminish, I’ve been to hospital at least 8 times.
Try and make sure she’s drinking enough, fluids are so important and eating if she can. I keep a supply of crackers and biscuits handy to nibble on. My hair is falling out again too but last time that stopped after the second cycle and it started growing again.
I’ve decided to stop further chemo, it really is so harsh on me and like I say many don’t complete it. I’m cancer free and hopefully I’ve done enough to stop any rogue cells, thankfully I was diagnosed at stage 2 so I’m hoping that it’s done with.
So yes, it seems like what your mum is experiencing is all normal but as always speak to one of the nurses if you’re concerned, keep an eye on her temperature and keep her fluids up.
I've recently completed 4 cycles of flot and have to say as poorly as I felt I have not had side effects as bad as others. Fatigue is normal and at times it's harsh. For me it was the nausea just feeling sick all the time even with anti sickness. The taste change and sore mouth is also harsh which made me not want to eat. Fluids are so important so always encourage fluids. Talking to others and reading others stories really helps me. I have a 6 week break then surgery which is pretty scary but if I'm honest I'm more nervous about having more chemo after I wish your mum well and again remember everyone is different xx
I've recently completed 4 cycles of flot and have to say as poorly as I felt I have not had side effects as bad as others. Fatigue is normal and at times it's harsh. For me it was the nausea just feeling sick all the time even with anti sickness. The taste change and sore mouth is also harsh which made me not want to eat. Fluids are so important so always encourage fluids. Talking to others and reading others stories really helps me. I have a 6 week break then surgery which is pretty scary but if I'm honest I'm more nervous about having more chemo after I wish your mum well and again remember everyone is different xx
