Total Gastrectomy

njcahill
njcahill Member Posts: 3 Member
edited April 19 in Stomach Cancer #1
I was diagnosed with stomach cancer in February of 2001. I had my complete stomach removed March 14, 2001. A month later I recieved chemotherapy and radiation. I am doing well and would like to hear from anyone else who has had this experience.
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Comments

  • jozef
    jozef Member Posts: 1
    Hello,friend of mine has stomach cancer.He had cemo and radiation.On Monday Sp.29/03 he was at the doctor and he has told him that he should have the operation, total stomach removal.Does he have other options or did you have other options. He would like to know since this is dificult operation or simply if there is other options.Do you know of other cases and how was the recovery.Me and my friend wish you all the best.
    Thank you,Jozef
  • dayers
    dayers Member Posts: 4
    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?
  • swylie
    swylie Member Posts: 3
    There is a really great stomach cancer website at http://www.tigerminx.com/scare/bev_journey.html. The message board in particular is a great place where people share info on what worked for them post-gastrectomy.
  • Laren
    Laren Member Posts: 2
    dayers 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?

    Am scheduled to have total gastrectomy 8 Mar 2004. What can I do to maintain my present weight & how have you gained weight after the operation? What does your diet consist of now? Thank you for sending reply to [email protected]
  • Laren said:

    Am scheduled to have total gastrectomy 8 Mar 2004. What can I do to maintain my present weight & how have you gained weight after the operation? What does your diet consist of now? Thank you for sending reply to [email protected]

    This comment has been removed by the Moderator
  • scparra38
    scparra38 Member Posts: 14
    Hello Njcahill,
    I am very interested in knowing more about the TPN Supplement. I'm not sure this is a good idea. but, i'm just trying to help my husband and keep him alive. I had asked the Drs. about this treatment. The drs. weren't really going for the tpn suppl. I had to push it. I'm kind of scared cause i really don't know anything about this treatment. I had read your story and was amazed and am just really going by your story and how it saved your life. I hadn't heard of anyone else using it. My husband has lost over a 100 pnds. is weight is at 115. as of last thurday. My husband is 39 yrs old,and is not gaining any weight. Everything that he trys to eat gets him sick. right now we are trying to get him to eat 6ozs of portions at 3x a day. I'm trying really hard to get him to eat. We are really scared and trying to keep him alive.
    I just wanted to Thank you for your story it really helps to know that we are not by ourselves....

    I can be reached at [email protected] or [email protected]

    Thank you I will be waiting for you response....
  • graybrd
    graybrd Member Posts: 2
    Laren said:

    Am scheduled to have total gastrectomy 8 Mar 2004. What can I do to maintain my present weight & how have you gained weight after the operation? What does your diet consist of now? Thank you for sending reply to [email protected]

    Hope your surgery went well. I had my surgery on March 8, 2001. Also had chemo (nearly killed me) I'm doing much better now. Slow to gain weight. Be sure not to drink milk or eat any dairy products, also sugary products can cause the dumps. You will also need B12 shots I have to have one every three weeks because of feeling tired had no get up and go. Eat small meals several times a day and really chew your food. Becareful not to fill up on liquids because they take up space in the intestine. If you like milk I've found that rice milk doesn't upset the system and tastes good the brand I like is Dream Rice most grocery stores have some sort of rice milk and it's usually found in with the diet products. Don't rush things. If I can help please contact me graybrd at [email protected]
  • karen174
    karen174 Member Posts: 6
    Thank God for you. My husband had the same surgery in Jan of this year. He is having a really rough time coping with the chemo/radiation combined treatments right now. He is on his last three this week. Are you still doing okay? I want to ask a question. He has this one problem that no one seems to be able to help with. He has this overabundance of saliva secretions that gag him. It is like he has to vomit this out about 5 times a day. Food never comes out..just this clear thick salvis. If you had this side effect what did they do for it? I am only looking for a possible solution for him. thanks
  • joolsiboy
    joolsiboy Member Posts: 1
    karen174 said:

    Thank God for you. My husband had the same surgery in Jan of this year. He is having a really rough time coping with the chemo/radiation combined treatments right now. He is on his last three this week. Are you still doing okay? I want to ask a question. He has this one problem that no one seems to be able to help with. He has this overabundance of saliva secretions that gag him. It is like he has to vomit this out about 5 times a day. Food never comes out..just this clear thick salvis. If you had this side effect what did they do for it? I am only looking for a possible solution for him. thanks

    Hello. I'm 31 and had/have stage 4 stomach cancer. I had total gastrectomy in Feb this year. Currently I'm on chemo cycle 3, its going OK. I'm eating some solid foods, mostly soft; I'm back on milk, no problems (the micro-flora in your gut can be replaced by eating yoghurt)
    I just spit my thick drooly saliva out. Don't swallow it, because it WILL make you throw up. TPN is GREAT! Especially when you're all nausous (sp?). Its so much more palatable than that osmolite stuff. You don't even have to DIGEST, it just goes straight in to the veins. I pump Nutren, made by Nestle into my j-tube.

    Jools
  • suey
    suey Member Posts: 10
    My father had his whole stomach and part of his colon out in March '04. He then started chemo and radiation. The radiation is over (5 weeks ago) and his chemo which he last had 5 weeks ago was supposed to resume 2 weeks ago but he is SOO sick they have postponed it. He has been on the TPN for some time now. Cannot eat or drink ANYTHING and is wondering if this is normal when he's had no treatment in almost 5 weeks? We are all suffering and I know he's wondering if he'll ever get better. Would love to hear any stories of similar experiences!!! Thanks
  • mullygator
    mullygator Member Posts: 7
    My mother underwent a gastrectomy in March of '06 and is having some complications with eating. We know that the diet is key in helping her recover, but the trial and error of it is daunting.
    Any advice???

    Many thanks!!!
    -Mullygator
  • mymomjoyce
    mymomjoyce Member Posts: 1

    My mother underwent a gastrectomy in March of '06 and is having some complications with eating. We know that the diet is key in helping her recover, but the trial and error of it is daunting.
    Any advice???

    Many thanks!!!
    -Mullygator

    Mullygator,
    I'm reading old messages about stomach cancer just desperate to find someone who's been there. My mother too had a complete gastrectomy in October '06. How is your mom doing? what advice can you give to me? I'll take anything!
  • majette2
    majette2 Member Posts: 2

    Mullygator,
    I'm reading old messages about stomach cancer just desperate to find someone who's been there. My mother too had a complete gastrectomy in October '06. How is your mom doing? what advice can you give to me? I'll take anything!

    total gastrectomy
    i hope your mother is doing find. i would like to read some new messages of someone with stomach cancer and there recovery from surgery or have anyone had a feeding tube after surgery?
  • happy77
    happy77 Member Posts: 9
    dayers 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?

    stomach cancer
    Hi, I was diagnosed with stomach cancer in march 2009. It seems like you are doing great. As time goes by after this surgery do you find you are living a normal life again? Like eating and feeling good. my surgery is not until June 8th 2009. I am having it done at the Mayo Clinic. The picture of you really shows what a strong and beautiful young lady you are.
    Thanks for any advice you can give me!!!
  • happy77
    happy77 Member Posts: 9
    stomach cancer
    Hi, My name is Sophia and I was diagnosed with stomach CA in March 2009. I have one more chemo cycle and off to Mayo Clinic I go for my Gastrectomy. I am also a non-hogkins lymphoma survivor which I was diagnosed back in 2001. Anyway, I was wondering if you can still taste your food after this surgery and what kind of diet you were put on in the Hospital? I've heard some people do just great after a few months and some not so good. Are you eating any foods you want yet? My Father was diagnosed back in the 80's with stomach cancer. They took 3/4's of his stomach out and gave him 6 months to live. He passed away 17 years later of a heart condition. They did not even know anything about this cancer like they do today. He had to start off eating a bunch of little meals and eventually ate everything under the sun. I think we have to keep good attitudes like you seem to have.
  • Lilllly
    Lilllly Member Posts: 16
    happy77 said:

    stomach cancer
    Hi, My name is Sophia and I was diagnosed with stomach CA in March 2009. I have one more chemo cycle and off to Mayo Clinic I go for my Gastrectomy. I am also a non-hogkins lymphoma survivor which I was diagnosed back in 2001. Anyway, I was wondering if you can still taste your food after this surgery and what kind of diet you were put on in the Hospital? I've heard some people do just great after a few months and some not so good. Are you eating any foods you want yet? My Father was diagnosed back in the 80's with stomach cancer. They took 3/4's of his stomach out and gave him 6 months to live. He passed away 17 years later of a heart condition. They did not even know anything about this cancer like they do today. He had to start off eating a bunch of little meals and eventually ate everything under the sun. I think we have to keep good attitudes like you seem to have.

    Stomach cancer treatment
    Hi Sophia, it sounds like you are a strong woman already and your story about your father is very inspiring.

    My dad was diagnosed with stomach cancer last April (a little over a year ago). Initially they believed it was stage I...however, found a speck in a lymph node and declared it stage IV. Generally they don't operate with stage IV, as it puts a lot of stress on quality of life in prognosis. He fought VERY hard for the surgery. He had some of the best doctors in the country (Canada) working on him as a team, and his plan was 3 cycles of chemo via port (3 weeks per cycle = 9 weeks in total) followed by a month recovery, then a total gastrectomy ("new" stomach made from intestine as a small teacup sized pouch), followed by about a month of radiation, followed by another 3 cycles of chemo via port. He lost 70 pounds (was a larger man to begin with though, also a smoker of 30 years...not anymore though). The surgery was very tough, mostly due to smoking-related complications (pneumonia, collapsed lung). Also, they found the tumor to be further over than originally believed and had to remove his gall bladder, spleen, as well as the tail of his pancreas and 74 lymph nodes. He was also diagnosed to be diabetic and told that he would be on insulin shots for the rest of his life post-surgery. Post-surgery he was on a feeding tube for about a week. Eating was a slow process. As I understood, he was to eat foods at room temperature, and separate solids and liquids (eat first, lie down horizontally, wait 30 mins, then drink any liquid). He was educated on dumping syndrome and does mostly well as far as eating goes.

    I want to let you know that as of two weeks ago though, he was told he is cancer free. He goes back in for his follow up in July. I was very nervous about hearing how much was removed from him, but his diabetes is diet controlled and he needs NO assistance of insulin, also, he is able to eat whatever he wants (his biggest problem is over-eating which is painful...but he still loves his food, thats my dad! lol). He eats heathier now though, gets his exercise. His incision became infected a few times which is pretty normal and was a mild annoyance in comparison to the rest. I'm so proud of him, he started back to work this week as well (half days) and is doing great. The radiation was pretty hard on him, definitely harder than the chemo, but everyone's treatment plan is a little different. When it was difficult for him to eat (no appetite due to the chemo) we bought Boost for him (supplement shakes) and made him smoothies with protein and fruits. The supplement shakes helped him a lot when the treatment was affecting his appetite. He made his body get used to his new parts though, and he is practically back to normal (minus the 70 pounds). Good attitudes help a lot, as does a strong support system. :)
  • happy77
    happy77 Member Posts: 9
    Lilllly said:

    Stomach cancer treatment
    Hi Sophia, it sounds like you are a strong woman already and your story about your father is very inspiring.

    My dad was diagnosed with stomach cancer last April (a little over a year ago). Initially they believed it was stage I...however, found a speck in a lymph node and declared it stage IV. Generally they don't operate with stage IV, as it puts a lot of stress on quality of life in prognosis. He fought VERY hard for the surgery. He had some of the best doctors in the country (Canada) working on him as a team, and his plan was 3 cycles of chemo via port (3 weeks per cycle = 9 weeks in total) followed by a month recovery, then a total gastrectomy ("new" stomach made from intestine as a small teacup sized pouch), followed by about a month of radiation, followed by another 3 cycles of chemo via port. He lost 70 pounds (was a larger man to begin with though, also a smoker of 30 years...not anymore though). The surgery was very tough, mostly due to smoking-related complications (pneumonia, collapsed lung). Also, they found the tumor to be further over than originally believed and had to remove his gall bladder, spleen, as well as the tail of his pancreas and 74 lymph nodes. He was also diagnosed to be diabetic and told that he would be on insulin shots for the rest of his life post-surgery. Post-surgery he was on a feeding tube for about a week. Eating was a slow process. As I understood, he was to eat foods at room temperature, and separate solids and liquids (eat first, lie down horizontally, wait 30 mins, then drink any liquid). He was educated on dumping syndrome and does mostly well as far as eating goes.

    I want to let you know that as of two weeks ago though, he was told he is cancer free. He goes back in for his follow up in July. I was very nervous about hearing how much was removed from him, but his diabetes is diet controlled and he needs NO assistance of insulin, also, he is able to eat whatever he wants (his biggest problem is over-eating which is painful...but he still loves his food, thats my dad! lol). He eats heathier now though, gets his exercise. His incision became infected a few times which is pretty normal and was a mild annoyance in comparison to the rest. I'm so proud of him, he started back to work this week as well (half days) and is doing great. The radiation was pretty hard on him, definitely harder than the chemo, but everyone's treatment plan is a little different. When it was difficult for him to eat (no appetite due to the chemo) we bought Boost for him (supplement shakes) and made him smoothies with protein and fruits. The supplement shakes helped him a lot when the treatment was affecting his appetite. He made his body get used to his new parts though, and he is practically back to normal (minus the 70 pounds). Good attitudes help a lot, as does a strong support system. :)

    So Happy for Your Father
    Hi,
    I am so happy for your Father. He sounds like such a strong man, just how Fathers are looked at from the little eyes of their Daughters that love them so much. You have giving me
    such an uplift. I can't believe your Dad went back to work already after all he has been through. But, the way it sounds having a wonderful daughter like you with such a great attitude that can really give you the will to push and go on. Honey, your a sweetheart.
  • Lilllly
    Lilllly Member Posts: 16
    happy77 said:

    So Happy for Your Father
    Hi,
    I am so happy for your Father. He sounds like such a strong man, just how Fathers are looked at from the little eyes of their Daughters that love them so much. You have giving me
    such an uplift. I can't believe your Dad went back to work already after all he has been through. But, the way it sounds having a wonderful daughter like you with such a great attitude that can really give you the will to push and go on. Honey, your a sweetheart.

    Progress
    Thank you for your kind words :). I haven't experienced this disease but staring at it in the eyes of a loved one really helped me understand a lot of things I was ignorant about before. Doctors do amazing things. Don't worry, stomach removal sounds serious, and it is considered a major operation (so feel like you deserve your rest and relaxation afterward!! and take it because you've earned it!!), but the human body is AMAZING and medicine has transitioned into living without a stomach and a "normal life" to work together somehow eventually. It does take time, but know that with every ounce of treatment and chemo you are that much closer to getting rid of it!

    Feel free to message me I'd love to keep in touch :):) It sounds like you have a good treatment plan, and are a strong person to boot. Very very effective!
  • lizy74
    lizy74 Member Posts: 2
    Lilllly said:

    Progress
    Thank you for your kind words :). I haven't experienced this disease but staring at it in the eyes of a loved one really helped me understand a lot of things I was ignorant about before. Doctors do amazing things. Don't worry, stomach removal sounds serious, and it is considered a major operation (so feel like you deserve your rest and relaxation afterward!! and take it because you've earned it!!), but the human body is AMAZING and medicine has transitioned into living without a stomach and a "normal life" to work together somehow eventually. It does take time, but know that with every ounce of treatment and chemo you are that much closer to getting rid of it!

    Feel free to message me I'd love to keep in touch :):) It sounds like you have a good treatment plan, and are a strong person to boot. Very very effective!

    You gave me hopes
    Hi Lilly,

    I am not even sure how I ended up reading and writing here.

    I was reading your posting and I saw my father's case in your father's. We found out two months ago that my father has gastric cancer. In the beginning we thought to be stage 2, and we wanted to take action as soon as possible. We haven't done to many tests as we do not believe in our doctors( Romania) and we took him to a Hospital in Germany (Homburg).Here, they have done only some blood tests and the results came so bad and confirmed cancer 100%. Within a week he already had the fist surgery, removing the stomach, gallblader and 74 lymph nodes. For this clinic this was the biggest surgery (the biggest before was removing 38 lymph nodes).

    Unfortunately, he is still in the hospital in Germany after 6 weeks and 5 surgeries. After the first one he was fine, recovering very well. But as you father mine is diabetic, smoker for 16 years and the worst he has Hepatitis C. After the first surgery like every 4 days he was reopen for 3 times...the anastomoza was fine but every time he had like a small hole, leakage from the intestine, duodenum...After so many surgeries and anesthesia his kidneys failed and he needed dialysis, then his lungs failed, he needed blood transfusions, he was intunbated... After 5 weeks in the hospital at the intevise therapy and 4 surgeries he was finally recovering until yesterday. He had water on the lungs, one was completely removing during the last 3 weeks, but yesterday they made a puncture for the other lung where there was not too much water.

    As I said until yesterday he was recovering very slowly but going in the good direction. He was eating, his fever was gone and Dr. estimated to send him home next weekend. Yesterday we think they made a mistake and this costs us a lot. Dr. said to remove 500ml water from his lung but they removed 2l. He started to have pain all of a sudden, the kidneys failed and all the water was going out through his skin...after hours of pain he had a hemorrhage in the lungs in about 7 hours, doctors decided to do a surgery to see what's going on with the lung. This was his 5th surgery with general anesthesia in 6 weeks. He is again at the intensive therapy in a very bad condition and dr. admitted first they should have started with the first surgery and second they don’t know what to do from here. They said this case is too difficult for them.

    I cannot believe it! We went to Germany as they are known to be good, they encourage us with having a good surgery, of continuing with an easy chemotherapy and in the end they said there is no point of chemo as this is the last stage and now they say they shouldn't have done the surgery at all.

    Would it be possible for you to give me names of the Clinic and doctors in Canada who made the surgery for your dad? They were telling us that here in US, Canada, UK nobody would have done such a big surgery.

    We lost all our hopes and we are wondering if we can take him alive back home to Romania. Now reading your message I have more faith and I hope he would be at least able to go home...

    Would you please send me the name of the hospital in Canada? And also if you have any dr. names?

    Best regards and I look forward to receiving your answer.

    Eliza
  • survivor2009
    survivor2009 Member Posts: 8
    happy77 said:

    stomach cancer
    Hi, I was diagnosed with stomach cancer in march 2009. It seems like you are doing great. As time goes by after this surgery do you find you are living a normal life again? Like eating and feeling good. my surgery is not until June 8th 2009. I am having it done at the Mayo Clinic. The picture of you really shows what a strong and beautiful young lady you are.
    Thanks for any advice you can give me!!!

    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