Total Gastrectomy
Comments
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What a great news how are you doing now?survivor2009 said:Hello, I hope your surgery went well in June.
I was diagnosed in August of 2008 with linitis plastica stomach cancer. I had surgery later that month. They removed my entire stomach, spleen and several lymph nodes. I had chemo and radiation that finished in April of 2009.
To assist in my weight gain, I have a tpn and take feeding nightly for 12 hours. I eat very often during the day in small amounts and chew my food very well. As time has went on my esophagus has shrunk somewhat from where they attached the small intestine to it. I will be having an EGD scope to dialate the esophagus in Sept 09.
I have a very positive story to tell as they were able to remove my cancer in one large mass and the chemo and radiation seems to have killed the rest. They are watching my liver closely as it has several lesions which are thought to be from all the over the counter med's I took for pain etc. BUT....my last Petscan showed I am in remission!
I still have the tpn but my weight is increasing slowly. Once I reach the goal my nutritionist wants they will back off the tpn and see if I can maintain.
The chemo caused permanent nerve daage in my feet which is trying to be controlled with pain med and seems to be starting to work.
All in all I am doing quite well. I am not able to return to work however the fact that I am alive and happy is all I need.
Through everything I maintained a VERY POSITIVE outlook. You must believe you will beat this. It is a matter of mind over body. You are going to struggle but please stay positive. If you need any support, do not hesitate to ask for it. People are truly amazing when something like this happens.
Good luck and God bless you....
Dana
My younger sister has the same cancer and they are going for cure. She has now 3 cycles of chemo, then surgery and 3 cycles of chemo again.
I was looking for someone who had experience with chemo and radiotion because I want to know about this treatment. I hope you can tell me something about this.
Best wishes and love
Jacqueline0 -
Hello,MrBBarc,Thanks to ourMrBBarc said:Total Gastrectomy
Hi All,
Im 34y/o and had a total gastrectomy in Feb 2010 + 6 months chemo due to HDGC (Hereditary Diffuse Gastric Cancer).
I am now a "survivor", and doing really well, with a weight gain of 10kg since June 2010. I can eat basically everything, and with portion sizes exceeding many "normal" people. I also drink with meals, and suffer seldom from dumping syndrome.
I have decided to try to find the longest surviving total gastrectomy patient, and to network generally with anyone who would like a chat! Knowledge is power, and I feel i have a moral responsibility to help anyone out there.
Take care, warm regards, Kia kaha (stay strong!)
Brett
Hello,MrBBarc,Thanks to our Savior Jesus Christ you are ok.I find myself looking for total gastrectomy on Oct.27.Already had 9 weeks of chemo,now surgery in near future.Ive been cool,until my last meeting with my doctor,friday.Honestly,I almost decided not to go thru with it,until I got on this site and read yours and other postings.Thank you so very much!!!Now I am ready and looking forward to this procedure as I was from the start.God bless you and everybody in a difficult time they might be in.With God all things are possible,stay up.0 -
my mother has the same procedureJackie6 said:What a great news how are you doing now?
My younger sister has the same cancer and they are going for cure. She has now 3 cycles of chemo, then surgery and 3 cycles of chemo again.
I was looking for someone who had experience with chemo and radiotion because I want to know about this treatment. I hope you can tell me something about this.
Best wishes and love
Jacqueline
hi jacqueline, my mother will going through the same process. she's likely older than your sister so wondering how your sister is holding up. my mother is scheduled to have her whole stomach removed in early february followed by three cycles of chemo. wondering how chemo after surgery went for your sister and what things she's already experienced during and post surgery that you think would be useful. good luck to your sister and thanx.0 -
what a wonderful story. theMrBBarc said:Total Gastrectomy
Hi All,
Im 34y/o and had a total gastrectomy in Feb 2010 + 6 months chemo due to HDGC (Hereditary Diffuse Gastric Cancer).
I am now a "survivor", and doing really well, with a weight gain of 10kg since June 2010. I can eat basically everything, and with portion sizes exceeding many "normal" people. I also drink with meals, and suffer seldom from dumping syndrome.
I have decided to try to find the longest surviving total gastrectomy patient, and to network generally with anyone who would like a chat! Knowledge is power, and I feel i have a moral responsibility to help anyone out there.
Take care, warm regards, Kia kaha (stay strong!)
Brett
what a wonderful story. the very best of luck to you. i'm wishing for the same result for my mother. glad you're able to eat how you were able to eat b/f cancer, etc.0 -
same hereMrBBarc said:Total Gastrectomy
Hi All,
Im 34y/o and had a total gastrectomy in Feb 2010 + 6 months chemo due to HDGC (Hereditary Diffuse Gastric Cancer).
I am now a "survivor", and doing really well, with a weight gain of 10kg since June 2010. I can eat basically everything, and with portion sizes exceeding many "normal" people. I also drink with meals, and suffer seldom from dumping syndrome.
I have decided to try to find the longest surviving total gastrectomy patient, and to network generally with anyone who would like a chat! Knowledge is power, and I feel i have a moral responsibility to help anyone out there.
Take care, warm regards, Kia kaha (stay strong!)
Brett
Hi there, my name is Nelson
Im survivor of stomach cancer. I had a total removal of my stomach in feb of 2008. I still have problems eating and controling my medication. Do you find yourself having trouble with food?0 -
Total Gasrectomydayers said:Hi. I had a total gastrectomy and lower portion of esophagus removed June 2000. I never had the chemo or radiation because my weight was so low they wouldn't risk it. I weighed 84 pounds after surgery. It sure is hard to gain weight. Today I weigh about 110 pounds. It took me forever to get to this weight. How are you doing?
Hi
Just had 4months of solid chemo for stomach cancer ,initially I was told it was in the gullet (cannot spell oesophagus ha ), lymph nodes and outside the stomach ,yesterday went to see the doc he said its shrunk all back into the stomach cannot find it anywhere else ? They are pushing me towards full stomach removal which maybe the way to go ? Said will get back to him in a couple of months going on hols first any one been in that situation .0 -
Hi i have recently had myMrBBarc said:Total Gastrectomy
Hi All,
Im 34y/o and had a total gastrectomy in Feb 2010 + 6 months chemo due to HDGC (Hereditary Diffuse Gastric Cancer).
I am now a "survivor", and doing really well, with a weight gain of 10kg since June 2010. I can eat basically everything, and with portion sizes exceeding many "normal" people. I also drink with meals, and suffer seldom from dumping syndrome.
I have decided to try to find the longest surviving total gastrectomy patient, and to network generally with anyone who would like a chat! Knowledge is power, and I feel i have a moral responsibility to help anyone out there.
Take care, warm regards, Kia kaha (stay strong!)
BrettHi i have recently had my stomach removed and am now going through treatment. I weigh just under 50kg and suffer from bad dry reaching. I dont eat a lot and dont want to eat.. do you have any advice for me? I really want to put on weight, gain energy (to spend with my young family) and eventually return to work. I cant see that anytime soon though. I lack in energy and continue to lose weight... please help me if you can.
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Hopcock said:
Hi i have recently had my
Hi i have recently had my stomach removed and am now going through treatment. I weigh just under 50kg and suffer from bad dry reaching. I dont eat a lot and dont want to eat.. do you have any advice for me? I really want to put on weight, gain energy (to spend with my young family) and eventually return to work. I cant see that anytime soon though. I lack in energy and continue to lose weight... please help me if you can.
I completed treatment for stomach cancer that included a total gastrectomy. My wife and I have put together a web site of information based on what worked for me.
The web site is called The Stomach Cancer Survivor's guide. (stomachcancersurvivorsguide.org)
There are two pages you might find particularly helpful.
The page on maintaining weight can be found at - http://www.stomachcancersurvivorsguide.org/getting-through-treatment-3/maintaining-weight/
And the page on retching and poor appetite can be found at - http://www.stomachcancersurvivorsguide.org/after-treatment/nausea-retching-and-poor-appetite/
We hope you find this helpful.
Gary0 -
Life after a total gastrotecmyMartin Moodie said:Total Gastrectomy
Kia Kaha Brett
I am a 55 year old (Kiwi living in London) who had a total gastrectomy in October 2010.
I had 9 weeks chemo before and after (the second particularly rough).
I have been hospitalized twice since, both times with small bowel blockages due to adhesions (scar tissue) but got the 'all clear' at my first six-monthly scan. Great news.
The eating regime is getting easier. I have found that chewing (to absolute pulp) is the key, even more so than portion size. It stands to reason when you think about it, mush or liquid is going to be a lot easier on your newly configured internal plumbing as it learns to operate without a stomach.
Certain fruits (kiwi or pear skinned and cut up fine) seem to be great. So is fish.
I have been told to avoid high fibre food - can cause small bowel blockages. Any theories on that?
Exercise seems to help as well.
Overall conclusion - it DOES get easier. Hang in there everyone.
Kia kaha
MartinHello, Martin. I hope you are doing well. I wanted to ask you about going back to work. How long was it before you were able to do everyday actitivties and go back to work?
thanks
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MrBBarc said:
Total Gastrectomy
Hi All,
Im 34y/o and had a total gastrectomy in Feb 2010 + 6 months chemo due to HDGC (Hereditary Diffuse Gastric Cancer).
I am now a "survivor", and doing really well, with a weight gain of 10kg since June 2010. I can eat basically everything, and with portion sizes exceeding many "normal" people. I also drink with meals, and suffer seldom from dumping syndrome.
I have decided to try to find the longest surviving total gastrectomy patient, and to network generally with anyone who would like a chat! Knowledge is power, and I feel i have a moral responsibility to help anyone out there.
Take care, warm regards, Kia kaha (stay strong!)
BrettI JUST GOT DIAGNOSED WITH STOMACH TUMORS AND THEY ARE RECOMMEND TOTAL REMOVAL HAD PAIN FOR YEARS CAN YOU GIVE ME SOME TIPS ON WHAT TO EAT EXPECT ???????????
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SuvivorMrBBarc said:Total Gastrectomy
Hi All,
Im 34y/o and had a total gastrectomy in Feb 2010 + 6 months chemo due to HDGC (Hereditary Diffuse Gastric Cancer).
I am now a "survivor", and doing really well, with a weight gain of 10kg since June 2010. I can eat basically everything, and with portion sizes exceeding many "normal" people. I also drink with meals, and suffer seldom from dumping syndrome.
I have decided to try to find the longest surviving total gastrectomy patient, and to network generally with anyone who would like a chat! Knowledge is power, and I feel i have a moral responsibility to help anyone out there.
Take care, warm regards, Kia kaha (stay strong!)
BrettHi; I am new to this sight. I had a total gastrectomy is April 1997. Not saying that I doing all that great but I'm upright ans eating. I would like to know if anyone cAN BEAT 20 1/2 YEARS.
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My brother had a total gastrectomyDlewisH said:Suvivor
Hi; I am new to this sight. I had a total gastrectomy is April 1997. Not saying that I doing all that great but I'm upright ans eating. I would like to know if anyone cAN BEAT 20 1/2 YEARS.
Hi, I am new to this sight just sign up, looking for info that might be able to help my brohter with severe nausea and retching for 14 straight days now, he had his surgery Sept.28th 2017 , he did fine with his first round of Chemo "Cisplatin", he just did one round of 5FU and has been sick the day that chemo started. Did you have chemo before and after and radiation? and did you get sick after chemo? if so what helped?
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Three months post gastrectomy
In April 2017 I was diagnosed with Linitis Plastica. One of the most difficult to diagnose and dangerous of the stomach cancers. Being a 48 year old man who takes no medicine and good care of his body, this was a shock. As everyone here knows, stomach cancer just shows up for no good reason.
My treatment was done at MD Anderson in Houston. I would highly recommend them if you can afford the travel and lodging expense. My wife and I rented a house during radiation and surgery. They started with a chemo regimen called T-Fox. Five weeks of radiation followed. After radiation was a six week recovery at home, then surgery for a full gastrectomy. The result of all this was a successful removal of the cancer and no evidence of spread. No guarantees, but good odds for survival.
The last three months, like so many here, have been challenging to say the least. Thank you all for sharing your stories, they have been so very helpful. Those of you asking questions, please come back and give back once you have run the gauntlet and share with those who follow.
In reading the stories, three things stand out:
The first is that everyone is different. I have had a tremendous amount of muscle cramping and pain which I haven’t seen mentioned. It has been so difficult that I have been taking hydrocodone since surgery and am finally coming off, though the pain remains mostly at night.
Second, recovery is definitely measured in weeks rather than days. It is baby steps. I am still losing weight and having difficulty eating all that I need. No appetite, nausea, and food tasting badly are the primary culprits. For the first month and a half, pain and discomfort were the primary obstacles for eating. I still use my J-Tube overnight in the hopes it will help keep my weight up. Hopefully that will no longer be needed by the end of the month.
Finally, it does get better. Though I have a long way to go to feel normal, life has improved oh so much. For the first month and a half after surgery, the most difficult decision each day was whether to get out of bed. Today, I try to sleep 10 hours a day, but have no difficulty getting up. My energy is slowly returning and my happiness as well.
Though the recovery has been harder than I had thought, there is light at the end of the tunnel. Life does begin to return to normal. All the stories from those who have six months or more under their belt give me tremendous reassurance that the challenge has a big payoff in the end.
Having gone through the first three months, which are by far the most difficult, I will come back and share some of the tricks that helped me through.
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There is light at the end of the tunnelJobussey1 said:My brother had a total gastrectomy
Hi, I am new to this sight just sign up, looking for info that might be able to help my brohter with severe nausea and retching for 14 straight days now, he had his surgery Sept.28th 2017 , he did fine with his first round of Chemo "Cisplatin", he just did one round of 5FU and has been sick the day that chemo started. Did you have chemo before and after and radiation? and did you get sick after chemo? if so what helped?
My surgery was October 3rd of this year. Fortunately for me, I think, all of the chemo and radiation was done before surgery. I cannot imagine trying to deal with chemo while recovering from a gastrectomy. Nausea, I found, was often caused by excess bile. Just drinking water caused my system to produce it and it hurt. My nutritionist suggested taking Tums as it can do no harm. They really made a difference. Today, my system has adapted and Tums are no longer necessary. Give them a try and see.
Nausea has also flared up from time to time. I take a generic version of Zofran when needed.
Hopefully, your brother will have a much easier time once he has completed chemo.
I have written a little about my experience, look for the posting for further information.
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Hi my name is Lebo.I am newMel0760 said:9 years post gastrectomy
Hi All! I am starting my 9th year of being cancer free from stage IV stomach cancer. I had a total Gastrectomy in Dec 2009. If I can be of any help ask away... I eat pretty much everything..
Wish all of you the best!
Mwel
Hi my name is Lebo.I am new to this blog.its so inspiring to read your comment.I was diagnosed with diffuse gastric cancer and part of my stomach was removed last year june,no lymphnodes were removed.Otherwise I'm okay.How are you and what was your diagnose?and what are you taking to keep the disease away,please advise
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I had partial gastrectomyDlewisH said:Suvivor
Hi; I am new to this sight. I had a total gastrectomy is April 1997. Not saying that I doing all that great but I'm upright ans eating. I would like to know if anyone cAN BEAT 20 1/2 YEARS.
Hi there,how are you?please tell mewhat did they diagnose you with.I was diagnosed with diffuse gastric cancer.Please I need to know how you survived 10 years after gastrectomy
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Total Gastrectomy
Hello Lilly, My mother has the same problem, stage 4 stomach cancer. The surgeon is not recommending surgery. Can you please provide the contact information for the hospital and doctors/surgeons names. I would really appreciate it.
Thank You
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Hello,
I am 62 years old and was very healthy until the diagnosis of stage II stomach cancer in early February 2022. Weeks of anxiety and stress followed, but now I am fully plugged into the Emory Univ Hospital system and will be receiving a total robotic gastrectomy with all the lymph nodes removed later this month. I have been receiving Keytruda (Pembrolizumab) every three weeks, and after surgery, I will be in more Keytruda, chemotherapy, and radiation. I am on a clinical trial that involves this regimen.
I learned a lot by reading this column, and I will revisit it periodically to update everyone interested. In addition, I started a private group blog on Facebook, and if anyone is interested, I will invite you into my group to read my journey through this challenging cancer. Just message me if you want to.
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