Is there anyone on this site that has had a full gastrectomy ?
In April 2015 my husband had a total gastrectomy (stomach cancer diagnosed by endoscopy Nov '14), had neoadjuvant chemotherapy >Jan '15 x 3 cycles ECX.
Then had adjuvant chemo >July '15 x 3 cycles (full strength) ECX
Currently in to his 19th month of remission, very well at the moment
I would be happy to answer any more of your queries
Hi . thanks for your reply . .I had the ecx 3 cycle treatment too which made me quite poorly . I had my operation to remove the stomach now 19th July so am still recovering from that . my consultant told me I had a very rare formof cancer called linitus plastica which causes the lining of the stomach to thicken. I have my post op scan next week so I am worrying about the results of that . like your husband think I may have to have some more chemo . .and I really don't want to lose weight again . .I am 9stone 10 at the moment . .feeling very frightened . .glad to hear from you and that your husband is doing well . .
I' so happy to hear your husband is in remission and I hope he is doing very well. I also had total gastrectomy in Oct 2014 followed by 6mo of chemo. I learned to deal with dumping syndrome and now faced another problem - bile reflux. Wondering if your husband ever experienced it and how you guys deal with it.Thank you.
Sorry to read that after all you've been through you now face the issue of bike reflux. My husband has never suffered with this, either pre or post operativrly, so am unable to advise. Hopefully a health professional can do so though, and that otherwise you continue to be well? Kind regards
so far everything else is manageable .... I did multi-nutrient blood test a year after chemo to see what's still lacking - list was surprisingly disappointing, so now taking more vits (not only B12 , iron, folic). it gave me strengths..
thank you for your response. I'm happy your husband does not have this issue.
There are quite a few people who go to OPA meetings that have had a full gastrectomy. The more of your stomach you lose, the less you will tend to feel hungry, and have to eat by the clock rather than feeling hungry. You also have to take extra care about mineral / vitamin levels as there will be some that you will not be able to absorb so well (eg B12 / iron). And any reflux may tend to be bile, rather than acid.
Luckily I don't suffer much with reflux but do get quite a lot of clear Fleming which I spit out . .think I may need a stretch so will discuss this with my surgeon next week at my appointment and results of my ct scan post op . .hoping all will be OK . this fear of the results is frightening me so much . .
Should say fflem. not the right spelling I know
Hi Jax34, Yes I've had a total gastrectomy more than six years ago. I was then 79 years old. At the time I asked the surgeon how or why I had cancer as I'm a non smoker and drinker, plus I've always kept myself fit? His reply: "How long is a piece of string? The good news is that you have the body of a young man and thus I advise the operation." My answer: "Whoever he is he's not getting the body back."
I was very much left to get on with life on my own since. Like many on here I suffered with dumping syndrome and reflux over the years. Through trial and error I managed to overcome most of the problems and returned to my daily fitness routine. It consisted of a four to five mile run in the early hours. As I live alone much of my time is taken up with house work, shopping and cooking.
In April of this year I attended Gloucester Hospital for a check up. I explained I was doing OK except for a swelling in the lower abdomen. I was referred to my local hospital in Hereford. In late July I was fitted with a catheter and told I would have an operation about three weeks later. August the 12th I had the Pre OP and again was advised the operation would be in two to three weeks. The operation as carried out on the 28th Sept. The catheter was removed on the 13 Oct. The whole experience left me drained, loss of more weight and the burning sensation in my lower abdomen and lower chest. The only medications I'm on are: B12 injections every 12 weeks and 25 micrograms Levothroxine.
I'm pleased to say my health is improving and I've started back on the road to fitness. This morning at 0630 was crisp and bright with frost and I managed a 4/5 mile brisk walk with the odd jog. Now I'm past age 85 I like to discover what my body is capable of.
When ever I get bouts of burning and they mostly appear at night without warning my remedy is to pop a mint humbug into my mouth (there are by Dominion) and the burning clears within minuets. I've no idea why they work but I'd be lost without them.
Don't know if this is of any use to others as I've always lived life 'my way' and continue to do so.
Chewing gum is a constant comfort against reflux for me, particularly after meals. As you say with the mints, I couldn't do without it.
I think you are amazing .
Jax34, If there's one of many things I've learned in life it's ' what doesn't kill you makes you strong. What is amazing is the hand I was dished out from the start of life. Real life began for me at the age of seventeen when I arrived in the UK from Ireland in 1949 to join the forces. From that day on I banished all thoughts of Ireland and was happy to have found a home with three meals a day.
Only when I was diagnosed with cancer I decided to research my background and the information I uncovered defies belief. As a child of two I was sentenced to fourteen years detention in the Industrial School system! During those years I witnessed deaths of children, one violent. There was no emotional effect from those experiences.
Though I was not given a basic education as were put to work at the age of ten and in my case I worked on the farm and poultry farm. Fortunately I passed the basic entry test to the forces as a Messing Orderly. My education was the University of Life. There was little option and it's proved and is still proving to be a wonderful experience.
When I discovered love in the form of a young factory girl the world was my oyster and anything was possible. All I had to offer was the promise of a dream and that I achieved by the age of 54, when I retired to the dream home in the countryside. We had three children, two girls and a boy. At age fifteen the younger girl was kill by a careless driver. Around age sixty my wife suffered with Alzheimer's. Now our son, age sixty enters hospital on the 20 of this month for a major operation. He is to be placed in an induced coma and has been advised he may be paralysed from the waist down.
I've lived life 'my way' and continue to do so and am still learning. There's so much to discover and the world is a very exciting place.
By the way Worthbanner thanks for the tip I've begun to use Extra Cool Breese chewing gum. Sorry for such a long post, but it's just a very brief outline of who I am.
You sound absolutely amazing ! I am just at the start of my journey . I am 67 years old female . up until this is too was fit but through lots of walking . don't take any tablets either . my op was on the 19th July so early days yet . still trying to get my head round this eating thing . can only eat my food mashed up . lost over a stone now . take forceval drink for vitamins and minerals also Fresubin jucy drinks for calories and B12 . .post op ct scan appointment next week so am feeling really scared of the results . hopefully they haven't found anything else . .don't suffer from reflux and not many bouts of dumping syndrome so lucky that way . my cancer is called linitus plastica a rare form apparently . .you are an inspiration to me and give me the strength i seem to be lacking . .thank you for your positive words . .
hello again, it's very early days for you!! expect an emotional rollercoaster over the coming weeks, it does take time to reorganise your life around your diet- but is certainly achievable. My husband was around 12st 12lb prior to diagnosis, now weighs a very steady 11 stone. I know some people lose much more weight than that, 3 stone +, but everyone will gain their own average. Like many, he grazes probably 6-8 times per day, we were told he would never eat more than a saucerful size of food at a sitting again, but he has proved them wrong. Eating slowly is the absolute secret to avoiding discomfort.
When eating out, I have a card issued by the OPA (obtainable from their website), which I show when we order food asking for smaller portions - businesses are usually very helpful. Don't let it stop you having a social life!
Good luck with your scan next week, and remember your body has undergone a huge insult, and will take time to recover - it is possible.
Hi thanks for your reply and positive words of encouragement. This is what I need at present as in these early days it all seems a bit overwhelming. Luckily I seem to be recovering very well from the operation itself. The only drawback is soreness below my ribs which I assume is where they cut through the diaphragm and the stomach muscles. Still taking tramadol for the pain but got down from 8 a day to 4.my appointment with my surgeon is next Tuesday to get the results of my post op scan. They apparently found some cancer cells on the cuts where the stomach was removed. He said tney were so small they could only be seen under a microscope. ?
So I am worried about that. I now get lots of support from the Robert ogden cancer entre at st James hospital in leeds which is where I had my op. Also I go to the opa meetings too when they are near to me. Wish there was more of them. Pleased to hear your hubby is doing well and anymore tips or advice you can give me will be very welcome. ?
My husband had full gastrectomy op 2 years ago
Hello, all! I read all of your responses and I admire your strength, honesty and mutual support. I hope you are all well.
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Hi I’m Brian I had my operation for a full gastorectomy 7 years ago . I had stage 3 cancer and was given 18 months.
I live a normal life with slight reflux and indigestion if I overeat (extra strong mints are wonderful)
I was told that I couldn’t eat chocolate as I would dump. I can say that providing I eat it over a day I can do say 200g !
The only thing that seems to get me is fruit in the morning !
The upside is I’m very slim and these days quite active although it took a while to get my strength and energy back
I have b12 every 3 month injection and take folic acid and iron tablets 2-3 times a week.
Everything in the garden is rosy so stay positive , do your best in whatever circumstances you might find yourself in and appreciate the life we are given
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