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 .
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
Im feeling a lot better now, Thursday I turned a corner and started getting more energy. It does always pass but the last one was the worst and I didn’t even get the full dose!
It is a particularly strong regime but thankfully effective, I hope your partner is doing ok and manages the side affects.
Day 9 and for the first time we went out . Starts again with round two on Thursday . You sound incredibly strong . He shaved his beard off today which was a shock . Have you suffered with hair loss ? And more importantly how are you ?
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.
