Hi, I'm new here. I was diagnosed with stage 3 oesophageal cancer just over a month ago and have just started FLOT peri-operative chemotherapy: 4-6 fortnightly sessions of chemo (depending on how much/well the tumour responds), followed by surgery, followed by another 4 cycles of chemo.
I have had one session so far and am due to have the second one next week, so I am just at the beginning of what promises to be a long hard road.
I would appreciate hearing from and/or about other members who have gone the same route.
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I was stage 2 when diagnosed (62 years old), went through 9 weeks back to back chemo and then major surgery. Fortunately I did not need further chemo after the op. I did as my surgeon asked, kept fit by walking daily (perhaps not so easy at the moment) but also had an exercise bike. I am now 3 years post op and doing well. A few issues along the way but there is always someone to ring/ask/get advice. It's a long road ahead but keep positive. There are lots of us.
Hey, Sue. I really hope you are getting better and better. My dad was diagnosed and did the operation. I am looking for a good specialised doctor to do the treatment again. Could you please share some information with me? Thank you very much! Stay positive and good luck to you. xxx
I was treated at Addenbrookes in Cambridge. Diagnosed at Peterborough General following collapse and referred on to Cambridge. Am now 3 years down the line from the op. and doing really well.
Thank you so much! I’ll check this out! He also had the oropharyngeal cancer, but he still smokes a little every day. Sigh. I am quite worried. We can’t even do the follow-up health check in time of the coronavirus outbreak.
I know it is so difficult. My last two follow up checks from Addenbrookes (one for the Cancer and one for another problem) have been via telephone but they are very good and give you plenty of time.
Hi my tip for you is to get as fit as possible. It is amazing how the surgery and chemo takes it out of you. You will get high days and low days. Speak to the experts they are there fighting with you. Stay positive and good luck to you. X
You will find there are lots of us here that have gone down this road, as I have said before there are ups and downs but remember there is a light at the end of the tunnel.
Most will have had chemo prior to the op, for me I was on my knees after 2 sessions of O X O chemo and it was stopped, I am now 19 months post op, and at 75 yrs old , enjoying my life.
Probably the best advice is to get as fit as possible prior to the op, without doubt it does help.
Keep your spirits up, remember you are one of the lucky ones that can have the op.
Thank you, Zippy and Jeff, for your encouragement and your tips about getting fit pre-surgery. I'm not too sure how best to work on this, as I was not terribly fit before diagnosis and I have lost a lot of weight - not just fat but flesh - through not being able to eat properly. Walking does sound like the most realistic option for me at this stage. Where I live, we don't have to stay at hoe just yet, so I can walk around the neighbourhood, just as long as I keep my distance from other people. Otherwise I'll try some DIY yoga! I'm sure I can find directions online.
Hi my dad has just come out of hospital he is stage 3 and prior to any treatment was on a nasal gastro feeding tube as couldn’t keep anything down. He had 24 radiotherapy sessions and 5 chemo sessions and then the Ivor Lewis Operation. He had post op complications of a racing heart and pneumonia so was in ICU for 9 days. He’s home now and doing really well, his chest is still bad but he’s coughing up clear waste and on puréed food. We go out for a walk everyday and it tired him out but is good for the chest and his mental health. Dad is 74 and prior to op used to play golf 3 times a week and is hoping to get back to this after everything with the virus has slowed down.
Wishing you well at this stressful time . Take care and away from people as much as you can your immunity will be very low. I didn’t have same chemo but 3 lots before and 3 lots after. Best to concentrate on the chemo right now how you are feeling, take temperature try to do some exercise even if you don’t feel like it. Keep a diary on what you are experiencing next session you will be able to see what days you felt certain highs lows in energy , side effects etc.
It’s a long road with many ups and downs and a very big operation. I celebrated 4years on 16th March.
Mine was stage 3. I had chemo radiotherapy for 6 weeks and then surgery after the correct gap. Biopsies were clear after surgery but it is still a long road ahead. Be prepared to take a day at a time and take baby steps. It is 3 years since my tumor was found. I am not the same as before but you adjust and improve gradually and life is worth .iving again
Hello lm On the same route 1 month from finding out . Just had my first flot on Thursday the n 2 weeks capecitabine , then a week off . 3 cycles then a scan . Feel crap at the moment but maybe not quite as bad as I thought . Don’t know if this will change , will have to suck it and see . Hope you are keeping positive it’s hard but keep going . Good luck , keep in touch
Thanks again to everyone who responded to me - your encouragement has really helped.
Just to report back -
I am supposed to be having my 3rd chemo session next week, but I have had a flare-up of my HSV keratitis; the result, no doubt, of low WBC and reduced immunity. So it looks as though my 3rd session will have to be delayed. It's frustrating, because I actually feel surprisingly well, all things considered!
Good luck with your treatment and it’s good that you are already undergoing chemo. Your details appear identical to mine exactly two years ago. It will be tough going but keep your spirits up at all times. I strongly suggest you:
1: listen carefully to your clinical team or have someone with you who can including taking notes are reading the handouts.
2: keep a record of what you are doing particularly your food and drink intake. It will help your routine particularly when taking your meds.
3: keep fit. Walk daily to help your circulation and posture.
4: learn how to sleep sitting up. Get holster cushions or wedges before you have surgery ( you can get them vat free).
5. Stay positive. You have been diagnosed early enough for a curative treatment programme.
Hi Tanktank and thank you for replying. I had my 3rd chemo session last week, so, all being well, it's one more chemo to go and then surgery. The op sounds terrifying and I am soooo nervous! But I'm trying to keep a positive mindset. Not so easy right now with all the other stuff going on around us (covid 19, lockdown, etc, etc), but I am determined to say strong and focused.
Hi just joined the site. I was diagnosed July last year with cancer of the esophagus at stage 3 then in September had 4 lots of FLOT chemo. At the beginning of December I had the Ivor Lewis operation. I was in hospital for just over 2 weeks. I've just finished the second lot of 4 chemo sessions. Things are now starting to look positive. It's not been the easiest of things to go through but I'm sure if I can get through it so can anyone else. There have been bad days when I didn't feel great but you just have to be positive and get through. Right now it only seems like a few weeks ago I was diagnosed the time has gone so quickly. Hopefully you will be the same, in a few months time you will be well on the road to recovery. All the very best from me.
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