Diagnosed mid 2017 - 4 chemo sessions completed Dec 2017 and Ivor Lewis done Early feb 2018.
The op and surgical care was superb and discharged after 7 days. Subsequent recovery has been quite hard - usual suspects : no appetite, retching on some days, back and chest pain, weight loss. About to start 2nd chemo regime of 4 sessions Hoping that I will be tested as cancer free in a few weeks.
Finding this site extremely helpful. Grateful that I have been blessed to get the care that I needed.
Hi James! You sound at the same stage as my husband, who's about to start his second round of chemo sessions in a few weeks after his op on Feb 26th. Like you, he's still very tired, gets pain and very breathless - as well as some digestive issues. Still early days yet. This site is a great source of support, advice and encouragement. Wishing you all the best for the next lot of chemo - do let us know how you progress, Kate
Hi James, I am 6 years post Ivor Lewis and my motto is little and often with food , walks, resting, it’s a long road ahead but so worth while. The weight loss is quiet a shock but some will come back, the chest and rib pains take awhile so take one day at a time, I wish you well take care.
Hi James, out after 7 days, how things has progressed in the last few years. I didn`t have chemo or radio treatment, straight in for the op on the 1st Feb 2012 out by 14th Feb (2 weeks stay) now 6 years since my op. It can be a slow and long road but take each day as it comes, the ups and down can sometimes be difficult but we all learn to adapt. How much we eat and how often. For some reason we all seem to suffer with `white bread` over the years I have tried all types, white, brown, soft, hard, different makes but it is only in the last few months that I have at last found a bread that doesn`t cause me any problems......Tescos high protein....it is a brown bread with some seeds in. Sites like this can be a great help in sharing your experience or learning from others. Chin up, take each day as it comes over time things will improve. All the best to you and your family.
Mick,
I think the treatment for this condition is changing all the time. I believe my chemo regime was developed in Germany with good results and did shrink my tumour pre-op - not by as much as had been hoped, but did shrink it by some degree. I could not eat bread pre-op, but post-op I have been able to digest some white bread with no issues so far and will now try the Tesco high protein.
I will let you know how I get on.
Appreciate greatly your advice and support.
Thankyou,
James
Hi James I am 7 years post op &I can still remember how hard it was after, but you do get there in the end & the sickness also stops in time.
I now manage to eat certain things but know what not to eat, little & often is definitely the way forward.
Good luck & I wish you all the best.
Jan
James: agree with you (and others in the thread) about long, slow recovery, despite some differences in treatments. I'm in the US, north of Boston (right: the other Boston). Diagnosed last June fairly early, doctor looking for something else. My treatment at Mass General different from what I've read here: followed new FLOT-4 protocol, all treatment pre-op: three months heavy chemo (including pump worn for two days each two-week cycle), six weeks of daily chemo-radiation finished end November. Ivor Lewis procedure early February; home after 7 days. All pathology came back clean (no malignant tissues) so appears a "complete response." Lost 30 lbs (from 13.2 to 11 stone), no muscle or fat left. At first not much strength or reserves, tired; constant negotiations with GI tract. Food diary helped, but sometimes a challenge to figure what was ok, or what caused an insult. Now, eating little of most everything--all the time. Aiming for 3k calories/day, but it's more goal than achievement. Into third week of regular workouts at YMCA, walk about a mile a day in woods, gaining ~1 lb/week (.07 stone?) so yes, a long, long way to go. Got on x-c skis with family last week, made 4k, celebrated in the snow. Recurrence always a ghost in the night, so we are thankful for this day, every day.
And thank you, James, for posting/starting this thread. Other much tougher threads/stories left me reluctant to say anything, but some modest good news is part of the larger story. I created a blog, posted from the first weeks to keep family/friends up to date (instead of having to email like crazy). It's loaded with daily copings, ups and downs. If useful, I'll post a link here.
DocLocke,
Sounds like a very intensive regime you have gone through, but the results look to be good. Until I get another couple of chemo sessions and then a follow up scan (should be in about 5 or 6 weeks) I will not know my exact cancer status. Taking everything one day at time and trying to improve my fitness and energy levels. As I type this (almost midnight) I feel pretty good, but expect that tomorrow morning around 9 or 10 am I may feel pretty bad (lasts about 1 hour).
I am prepared for a long slow recovery and believe that this support group will be essential to achieving a better long term outlook.
Many thanks for your detailed reply and best wishes for your continued recovery.
James
James:
Thanks for wishes and back at you.
I found (and others have, too) that working on fitness and energy in a regular way one of best things can do for self: to help recover more quickly from chemo, improve and stabilize mood. Agree with AlanM's suggestion to eat little, by the clock. Some days I have to set an alarm but hey, as long as it works. A big high-protein smoothie nearby through the day helps when memory skips.
Sometimes the lack of appetite might be because the surgeons may have removed the bit of your stomach that produces ghrelin, that triggers off signals to the brain that turn into hunger feelings. So eating little and often, and by the clock rather than because you feel hungry, can make a big difference.
Try not to worry about weight loss.
OPA_AlanM,
Very interesting that this may be this reason for my complete lack of appetite. Until now I have not stuck to rigid meal times - this may be the way to go as well as keeping a food diary. I think I will give it a try.
Many thanks for your reply.
James
I am now over 8 years post Ivor Lewis and I never get hungry at all. eating regular and small meals is still the order of the day and always will be, eating every few hours. Life is good and a lack of hunger is a small price to pay for those extra years 
rayw55,
Yes this is certainly the way forward - small and often. That said, I am finding it hard to build variety into my diet : gone off Weetabix, porridge and no longer enjoy a cup of tea where I used to drink around 12 cups a day. Probably need to experiment with some new foods.
Best wishes.
James
Tastes change week to week, so foods you don't fancy this week may be better in a few weeks,. The only thing I don't often fancy anymore 8 years on is coffee which I drank gallons of before the op. Good luck .
James good to hear. I had Ivor Lewis in2009. It will get easier to deal with the day to issues. You will build a new life and a new way of living with the limitations that having this procedure . It’s now 8 years on and I although i have dropped from135kgs to96kgs I am still enjoying what life gives.
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