Total Gastrectomy

[ICouldBeBetter]

Hi,

I had FLOTx4, total gastrectomy, partial oesophagus and lymph glands, and now facing 4xFLOT (I've had two).

Has anyone else had this?

[whasler]

I had FLOT *4, oesophagectomy and then FLOT *4 again. Hang on in there with the second round of chemo... Tougher than first round but you'll be at the end soon

[ICouldBeBetter]

Thanks Whasler, That's encouraging. It's the gastrectomy (total stomach removal) that is really playing me up badly. There must be people out there who've had my surgery but I've not come across anyone yet. It is so specific symptom wise. Good to be part of this community though. Glad you pushed all through the surgery and the double FLOT. I think there is a high drop out rate so well done you! I'll soon be at the end as you say. I just can't wait but then need to adjust to not having a stomach next so trying to prepare online here.

[Golf1910 in reply to ICouldBeBetter]

I had a total gastrectomy 12 and a half years ago and over a 2 year period after the op lost 4.5 stone in weight and averaged around 9 stone 3 lbs ever since. Have had eating issues over the time since my stomach removal but accept these such as regurgitation of food, bringing food up when initially eat but okay after a couple of mouthfulls come up, not every meal just seems to be when cant digest it seems to get stuck although there are no restrictions. I get spasms across my chest and tried to determine why but think it's when I have something cold like a yogurt, always worrying as wonder if it's a heart attack but my upper GI nurse says its all because of the surgery even this long after. I try to eat normally (albeit I am not and never will be normal) and do snack a lot on crisps etc that I can eat with no problems at all very strange but whatever works I guess. As the UGI nurse says "you are sitting there" and she is right 12.5 years later I am still going and I am now 86 and hoping to keep going for a while yet. I had problems with the op when the staples joining the small intestine joining to the oesophagus leaked and had to go back for another op to open me up and re-join, the pain when it leaked was just awful but redone and all okay since. At the end of the day we have had major surgery that changes the body completely especially when the Vagus nerve is severed. I have B12 every 8 weeks as without a stomach you cant produce it the same as Creon tablets as the pancreas doesn't produce the enzymes to digest food. Let me know if there is anything else

I can let you know

Rob