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 .
I wanted to send a message to let you know our nurses are here should you have any questions about this or any other aspect of your diagnosis. You can reach them on 0808 800 4040 (Mon-Fri, 9-5).
Otherwise, I hope you find the forum useful and I want to wish you all the very best for your treatment.
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.
How is your chemo treatment going? I'm due to start the FLOT treatment aswell next week for stage 2 stomach cancer. I wanted to find out about what to expect on the first day, quite anxious. Conscious impact is different for everyone.
I too have been treated for stage 2 stomach cancer, I am 2/3 through treatment having had 4 FLOT cycles sep-Oct last year, total gastrectomy 2nd January and am due to start chemo again on Tuesday, I can understand how anxious you are as I am too. I think the hardest part for me was/is the emotional impact that chemo brings, not knowing how the side affects are going to take hold and also I worried a lot about getting an infection, probably a bit too much really. For me I would just feel tired/nauseous for a few days and then main affects would kick in about day 3 for a few days and then I would get temperature spikes which would mean a trip to A&E. Many of the affects are accumulative such as neuropathy and problems with my mouth and taste buds, but they do go. I was able to eat throughout and get out for a little walk towards the end of the 2 weeks.
Once chemo finished and I waited for my operation I felt I bounced back pretty quickly, I felt weak but all other side affects went and I was able to do normal things. My advice for after chemo is to eat and gain weight, you will lose it after your operation, I gained an extra 7lb on top of my normal weight and lost 1 1/2 stone since my op and my weight has stabilised for now.
Good luck with everything, each stage of the journey brings its challenges but being on a curative path is very lucky.
Hello, I’m starting FLOT next Monday and I’m feeling very apprehensive. I was diagnosed with stage 3a invasive stomach cancer 4 weeks ago, so everything has moved very fast. PICC went in yesterday. So like you it’s chemo, surgery, chemo. Your experience of chemo has given me valuable information. Well done on getting 2/3s through
sorry to hear of your diagnosis, it's quite a journey, emotionally and physically but you will get through it. I’ve started chemo again 2 weeks ago and it has been harder than before surgery, however someone else I know has just started again at same time and has been fine, we’re all different.
If you need anyone to talk to or have any questions, please message me, it can be quite isolating even with the support of loved ones. I’ve found my online friends a great help.
Thank you. Yesterday at the ‘do’s and don’ts’ chat with my Macmillan Nurse the reality set in. My last hopes of being told that they had mixed the results up went. So this is it, I do have cancer. Let’s get on with it then.
I know that feeling well, 7 months in and sometimes I still can’t quite believe it.
Once treatment gets underway you have so much more to focus on and milestones to achieve, you’ll find it a bit calmer believe it or not. My advice would be to eat while you can, try and keep your weight up during chemo, I found I was still able to eat although everything tasted weird. Once chemo is finished build yourself up and try to gain weight before surgery if you need to, you will lose it.
I’ve been cared for extremely well by my team, they are always there to answer questions and give advice, make sure if you’re having side affects you tell them they may be able to help you, I’ve ended up with 4 different anti sickness tablets, one I’ve not tried yet but you can take different ones alongside each other if needed. Ondansetron and cyclizine have been the best ones but you have to get your GP to prescribe them if needed make sure you fill in a free prescription form if you pay for your prescriptions. I took ondansetron because chemo causes indigestion and also got difflam mouthwash from GP to protect from mouth sores, I didn’t get any. Also use a baby toothbrush and biotene toothpaste is good for a dry mouth. You also need a thermometer I use an ear one as more accurate than the mouth one I had. Try to take your steroids early in the day my first told me second dose by 2ish to avoid them keeping you awake, it does all mess with your sleeping patterns but just rest when you need to.
Hoping Monday goes well for you, I’ll be thinking of you.
