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 you are unwell. It's a long road ahead for all of us with this disease and can be tough at times.my first stage of chemo was not as bad as others even though at times it was hard. For me sickness and nausea was the problem. I was also very tired and slept a lot so go with whatever your body tells you. When I had my surgery which was a full esophagectomy I didn't know what to expect. I don't remember waking up in ICU I don't remember much about being in there which was for 4 days. I do remember the care was exceptional. I had two drains one either side but no pain as it really was kept under control. The second day after op they will get you up walking and as much as you don't feel like it you must do it. When moving onto a ward you start to do more for yourself . Unfortunately for me I got surgical enfasema and ended up back in ICU but again everyone is different. I was in hospital for 1 month . Once home I started walking each day and trying my hardest to eat small amounts as I had the feed tube on over night. Eating is hard at first but you do adjust and learn to tolerate food. I am told by others it takes around a year for your new body parts to adjust. I have met a lady who had the same op 10 years ago and leads a totally normal life and looks amazing so I go with the hope this will be the same for me. At times I've felt very low and don't feel like I'm doing well but everyone tells me how well I'm doing . I was driving after 6 weeks . The scar on my back hurts at times but nothing I can't deal with. When do you start treatment and what type of op are you having? It is amazing what can be done so stay positive and do everything you are advised. I have just wiped this year out as it has changed my life but I know that next year I can enjoy my life again. Anytime you want to chat I'm here it's really good to talk to others.
Sorry to hear you are unwell. It's a long road ahead for all of us with this disease and can be tough at times.my first stage of chemo was not as bad as others even though at times it was hard. For me sickness and nausea was the problem. I was also very tired and slept a lot so go with whatever your body tells you. When I had my surgery which was a full esophagectomy I didn't know what to expect. I don't remember waking up in ICU I don't remember much about being in there which was for 4 days. I do remember the care was exceptional. I had two drains one either side but no pain as it really was kept under control. The second day after op they will get you up walking and as much as you don't feel like it you must do it. When moving onto a ward you start to do more for yourself . Unfortunately for me I got surgical enfasema and ended up back in ICU but again everyone is different. I was in hospital for 1 month . Once home I started walking each day and trying my hardest to eat small amounts as I had the feed tube on over night. Eating is hard at first but you do adjust and learn to tolerate food. I am told by others it takes around a year for your new body parts to adjust. I have met a lady who had the same op 10 years ago and leads a totally normal life and looks amazing so I go with the hope this will be the same for me. At times I've felt very low and don't feel like I'm doing well but everyone tells me how well I'm doing . I was driving after 6 weeks . The scar on my back hurts at times but nothing I can't deal with. When do you start treatment and what type of op are you having? It is amazing what can be done so stay positive and do everything you are advised. I have just wiped this year out as it has changed my life but I know that next year I can enjoy my life again. Anytime you want to chat I'm here it's really good to talk to others.
Hi Lisa thank you for your reply I see oncology team on Thursday and hope to start the flot chemo next week 4 chemos then a break then op and then more chemo I’m terrified .im so glad to hear you are doing well and especially that the lady you met is 10 years on fingers crossed for us .did you have the same chemo .im finding im very weepy keep thinking I will wake up and it’s been a bad dream .best wishes to you keep in touch
Im so sorry that you are having to go through this. My diagnosis was a year ago on Wednesday and it does feel almost like it was just a bad dream. I am physically quite well, I have the odd days where I’m tired or off but mostly life is very good, I went on holiday 7 weeks after chemo and again a month later, I’m about to go away again next week so life certainly goes on, I can eat most things, I can enjoy a little drink or two, I’m wuite surprised how quickly I healed. My hair is regrowing, I’ve been able to dye it again, all in all physically it’s better than I expected. Emotionally it can be tough, a diagnosis changes you, I get health anxiety which started after treatment finished but I know I will overcome it, it’s still early days, but I do feel stronger emotionally too, I take more time in enjoying the small things and don’t get frustrated as easily these days, I suppose the anniversary of my diagnosis is flagging up mixed feelings.
i have been where you are now, I cried for a while but I also had many joyful moments. Once treatment was underway I felt more focused, it’s a long road and I does get bumpy but there is an end to it and the sun will shine again.
Much love and best wishes to you. If you need to talk please contact me.
thank you for your reply I’m so glad your doing well I should start my flot chemo next week I had never heard of this type so I have my fingers crossed .thank you again for the info you has given me .i think your right that once I start my anxiety might improve .
hi there can I ask did you suffer with insomnia I’m finding I can’t sleep but I’m so tired doc gave me some sleeping tablets before I started chemo but I’m scared to take them any advice thanks
I was diagnosed 12 months ago with oesophagus cancer 44 years old last year was told they didn’t know whether it was palliative or curative had to wait for the usual tests I was blessed to hear that we could try chemo to reduce the tumour then go from there another waiting game they prescribed FLOT I had my first round in September every two weeks four lots first one wasn’t too bad I felt tired bones ache and had nausea however it I took lots of advice and rested didn’t work slept when was needed and ate little I didn’t really feel like eating however my wife made me and I am grateful she did , the rest of the cycles were the same symptoms slightly worst on the last as it was approaching autumn and the numb and tingly fingers kicked in I couldn’t hold anything cold my experience and it’s mine and everyone is different is rest sleep whenever you feel like it and eat small even if you don’t feel like it hope this helps ,
I did suffer a little with insomnia when taking the steroids before and during the first days of each cycle, I found taking the second dose early in the day helped and if needed I would try a sleeping tablet, I found on the days between cycles my sleep pattern was all over the place, sleeping in the afternoon and awake all night. My advice would be to talk to your team and see what they suggest, don’t be afraid to take whatever help you can.
Hi mark thank you for your reply had my first flot so far so good next one tomorrow so fingers crossed .i did experience tingling Ingres for a few days if I forgot and went in the fridge etc .lost my appetite for about 5 days then it came back couldn’t stop eating for a few days .inalso found that the swallowing was easier after the fifth day .thanks again .
think the forum is a great way of finding out information and a way of checking to see if symptoms are chemo related I have learnt quite a lot from the various replies and has put my mind at ease. I have just finished my 4th cycle of flot not been easy had quite a few of the side effects found the sore mouth and watery eyes most annoying but have realised drinking plenty after a cycle does stop a lot of the side effects good luck to you all and thanks
