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Stomach cancer

JMatson
Posts: 6
Joined: May 2009

My son, 43 years old, recently had stomach and spleen removed (cancer). Has been rehospitalized several times severely ill with dry heaves, vomiting. Even after discharge, constant salivation, nausea not responding to Zofran. Unable to eat nor tolerate liquid nutrients via J-tube in abdomen. Surviving on IV via PICC catheter, losing much weight, weak. Doctors have no answer other than recommending that he eat, that there is no medical reason why he can't eat - but prior attempts have all led to vomiting. Is excessive salivating, nausea, dry heaves only a temporary condition? Would appreciate hearing from others who may have experienced similar symptoms.

JMatson

ChuckS
Posts: 2
Joined: May 2009

I only have the salivation and nausea issue when there is an intestinal blockage which doesn't happen very often but is really bad when it does. I had a GI go in with an endoscope and he said everything was fine for the area he could reach. He said they do have a tiny camera which can be swallowed and an external device records everything where the next day they can have a look at the entire intestinal tract. I also had issues with the J-Tube and started sleeping sitting up (Ativan helped get me to sleep in that position) which solved that problem. With the J-Tube I had to start slow and over a day or so work up to a normal feed rate.

It might be a good idea to seek out a good GI doc to talk to for the salivation and nausea issue.

Most of the issues I had in the early days (like dumping syndrome) are gone now. I still get the blockages (which is just part of abdominal surgery they tell me) on occasion and pain if I eat too much too fast.

Best wishes for you, your son, and everyone here at CSN,

Chuck

JMatson
Posts: 6
Joined: May 2009

Thanks for your response. Will consult gastrointestinal specialist re camera. Son scheduled for small bowel x-ray series using barium - will ask if this is equivalent. Team of doctors stymied as to causes as son must be maintained on TPN - cannot take foods by mouth nor via J-tube without dry heaves, vomiting. They think symptoms are not physical in origin.

Tomissimo
Posts: 37
Joined: Sep 2008

I had nausea problems after I started eating again. At that point I had problems either via formula from the J Tube or eating. I've stated several times the worst part of the whole process was starting to eat again for me. I hope it goes smoother for you, but irregardless it does get better eventually. Though some foods take longer then others. I just started to be able to eat/drink dairy again to a small degree about a month or two ago. So that was 18 months approx after surgery before I could handle it again. Of course I still don't like chocolate unfortunately.

JMatson
Posts: 6
Joined: May 2009

Thanks for your response. Wow, 18 months? Any advice re how you overcame your nausea problem enough to begin taking food? Zofran no help. I keep hoping problem will diminish with time but unsure. So far doctors can't find explanation for problem, including inability to tolerate feeding via J-tube despite two different formulas (bile backup, vomiting).

Tomissimo
Posts: 37
Joined: Sep 2008

I want to disclaim I do not support what I did, because my doctors weren't too happy with what I did.

Simply put I was trying to eat more then I felt I could. I quite simply ate very small meals. Then again I also dropped from 165 lbs to 103 lbs at my lowest weight. So again what I did is probably not the best approach.

It is mostly experimenting though. Avoid anything sugary. Even natural sugars like fruit or fruit drinks/juices. Grape Juice was one of the first and worst things I tried. I still hate grape jelly, juice etc because of that. So you have to unfortunately suffer until you can determine which foods cause you problems more then others. I had nurses absolutely tell me not to drink Regular Tea, or even herbal teas (I got different answers from different nurses). But to be honest I drank the tea anyways because it was the only thing I got even the slightest amount of enjoyment of consuming. I would say to heed the doctors advice as very important, but if you can tolerate something without nausea or reflux your body is telling you better then what your doctor can. My oncologists agree that the best judge of things is what we the patient feel we are capable of handling or what our symptoms mean (which going through this scared spitless isn't a great thing to hear).

I also stopped the J tube feedings after the constant feeling of nausea because I couldn't take it anymore and needed to sleep. Again this is not something I would recommend and I did it because I quite simply didn't care anymore and figured if I was going to go so be it but at least I'd have some comfort.

One of my sister-in-laws friends said the ability to digest milk is in the Duodenum, which I had removed in my surgery. I'm not a Dr. so I don't know if that is true enough but sounds somewhat reasonable to me.

I took Ativan as my main Anti Nausea Medication, but also Zofran and a couple of others. I'm afraid I don't remember which ones. I had a lot of nausea during Chemo/Rad treatments. The feeling does diminish in time that I can say.

I tend to ramble so I'll try to sum up:

- Eat smaller amounts until you determine which is the appropriate volume to consume without causing nausea
- Stay away from sweet/sugary foods. Natural or added sugar (citric fruits)
- Keep a journal of what you eat and when you feel nauseated. It may be particular foods that are causing it.
- Alternative Anti Nausea medication may help as well, but I'll leave any decision of that to a Dr.

JMatson
Posts: 6
Joined: May 2009

Thanks so much for your detailed and frank response. Sounds like you had an especially difficult time but glad to hear you've been able to overcome it and arrive at a decent adjustment. Most encouraging is your assurance that things improve over time. Right now it doesn't look that way to us - progress is very slow and anything eaten has to be in minute amounts. Zofran no help at all - Compazine helps but almost like a "knock-out" pill in that it almost always induces marked drowsiness, sleep. Relative recommended an herbal tea (ginger-based) as we've heard from a couple of sources that it's useful in controlling nausea. Tastes okay but just tried it for first time so maybe an "old wives' tale." Weight down from 155 to less than 125 and holding.

Yes, heard about dairy products so avoiding same like the plague. Hard to find any food where even the thought doesn't induce ill sensation.

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

I took Emend for the nausea when zofran didn't work. Ginger was also helpful for nausea.
Good luck and God Bless,
Hollyberry

EugeneWA
Posts: 2
Joined: Sep 2009

Hi JMatson,

Is there any change on your son's vomiting symtom? My wife (44 yr old) had stomach sugery (4/3 cut) in May and she still has a lot of vomiting now (most salivation, some bile). The medication doesn't work. The doctor suggests the 2nd surgery. I am wondering if anyone get similiar suggestion.

EugeneWA

happy77
Posts: 9
Joined: Apr 2009

Hi, I was just wondering if once your stomach is removed does it effect your taste? Before I started chemo for my stomach cancer my food did not taste right.Has this happened to anyone out there? Now with the chemo it is worse which is to be expected.
Thank You So Much!

ChuckS
Posts: 2
Joined: May 2009

After my gastrectomy I had no taste issues everything was fine and again after chemo it's great. I have problems digesting some foods like Indian food but everything tastes good. Good luck with the surgery and we'll be thinking about you on Tuesday.
Best regards, Chuck

Tomissimo
Posts: 37
Joined: Sep 2008

Not sure how to answer that. Taste may not be different, but Milk/Dairy type products and in particular Chocolate and other dessert type foods are generally unpleasant for me. Not sure if it is a taste change or just simply my body not reacting well to it. Certain foods that caused me issues when starting to eat again. i.e. Grapes and grape flavored foods leave a bad taste in my mouth. But I think that part is more psychological then anything else.

CMC
Posts: 5
Joined: Jul 2009

Just read some of your responses post gastrectomy considering my mom is at that crucial point right now, trying to decide if she even wants to proceed with the surgery.

Drs. are strongly suggesting she have the surgery since she has had such a fantastic result with just 4 rounds of chemo. Everything has shrunk - gastric tumor and lymph nodes. They say even though she is 79 years she is an excellent surgical candidate
She of course is naturally fearful of such a big procedure - removing the entire stomach

I could not help noticing that several of your responses involved discussion of a J-tube
What is this tube like and how long did you need it ?
Is it just to put food in ?

My mom's surgeon said nothing about tubes after surgery. He just said it would take a while for her to determine what she could tolerate and how much she could eat (portion sizes). She is only 4 feet 9inches and weighs 112 lbs pounds (she is just naturally little) so all this talk of weight loss and tubes is something she will need to at least have some understanding of if she decides to proceed

Thank you for taking the time to share your experiences
It is comforting to know some one else is out there coping with these same concerns. And inspiring to know others are doing well and willing to encourage others

Paul_Buzza
Posts: 4
Joined: Jul 2009

The J-tube is a feeding tube that comes through the abdominal wall and feeds directly into the upper intestine just below where it has been reattached to the esophagus. It is used in the hospital for nutrition, and mine was left in, so that I could continue the liquid nutrition when I came home. Home health nursing brought a feeding pump and supplies to the house. I used it for about three weeks post surgery to supplement the solid food I was eating. I'll have mine taken out next week, since I haven't been using it for the last few weeks.

In addition to my comments posted on your other queries, I would also be aware that weight loss may be a significant issue. I started at 220 in January and was down to 180 at surgery. I've since lost another six or seven pounds, so I think I'll end up with a 20-25% loss overall. That may be something your mom has to consider.

OCTOMAN
Posts: 22
Joined: Jul 2009

Paul-Bussa I have a fellow golfer who had his stomach removed about 5 years ago he is a very jolly fellow and great golfer he told me he was 15 stone.he is now 10 stone in weight.I also have stomach cancer I decided against having my stomach removed,my friend told me I was mad,but 5 years on,I am still alive at 79 I am 11 stone in weight same as I was at 25 ,I certianly have not found it plain sailing more like pain sailing 7 years ago I was diagnosed with stomach cancer which had spread to my liver and kidneys no hope.After 2 years they found the liver and kidney tumours were dormant,now I could have my stomach removed,but I declined.So apart from iron tablets.my cancer bleeds,(Thats how my cancer was found in the first place),Acute amnesia,sorry I mean amnemia or both I am very forgetful.I take no medication what so ever,I had pain last night I just went into deep relation mode it eventually went.I am in my slow motion mode today.very relaxing.I am glad I choose this route.but I have been very lucky.

OCTOMAN
Posts: 22
Joined: Jul 2009

I have survived stomach cancer for 7 years now,I like someone else on this page think I caused my own cancer.I was in a stressed occupation my diet was poor and forced down my throat in a hurry,behaviour which I carried on into retirerment.at cancer diagnoses I reversed this behaviour and my diet and learned to relax enjoy life and here I am alive and well at 79 years of age.I have a copy of Cancer Research UK figures for stomach cancer survival it is only 12% for 5 year survival at age 70 to 79 years so I have certainly beat the odds.for treated stomach cancer suffers. Does it mean I am just very very lucky.is this story any help to other cancer suffers?Well if an old man can survive,young men should be able to.the statistics are better.

kmagallanez
Posts: 5
Joined: Sep 2009

helo cmc my name is kathy my dad was diagnosed with stage 1 stomach cancer abd is going 4 a total stomach removal on sept 16th hes 77yrs old and im very scared like you they say he is a good canidate 4 the laparoscopic surgery due to his cancer being at an early stage did your mom go threww with it and if she did how is she doing i know what your feeling my dad means so much to me he had a quadrouple bypass in 2005 and came out fine with no trouble they say he can with stand this surgery but still im scared please respond back also what stage was your moms cancer in thank you and god bless kathy

cymru
Posts: 1
Joined: Sep 2009

Hi kathy,

my mum went through total stomach removal in may 2008. It was obviously a shock to her and us all in the family. She was 67 when she had the operation and is still with us now!! So, support and being strong is so important. If you dad has had the operation now, i hope he is doing ok. I'ts a hard one, as i saw how my mum was after, and the recovery takes time. My mums cancer was diagnosed at an early stage and she is proof of survival, against the odds so you may think at the time....It's a slow process, but love, patients and determination can work. Not to put you off, my mum (when she could speak) said she felt like she had been run over by a bus after the operation and it was hard to see, yet alone what she must have been feeling...now, she takes each day as it comes. She manages to go on short breaks and tries to deal with dietry problems and writes down all the foods she eats and the effects it has on her. She is not as strong as she used to be (physically) but she still looks lovely, laughs and has quality time with her family, grandchildren and friends. Most of all, don't underestimate rest....every day. My mum dissapears for a sleep (even though she fights it a lot) most days and i cant stress how important this is. There is still a quality of life to be enjoyed after this and, god bless, i'm thinking of your dad and your family. Be strong. xx

happy77
Posts: 9
Joined: Apr 2009

Hi Kathy,
I am 49 years old and had a total gastrectomy done in June 2009. I had this surgery done at Mayo in Rochester MN. I was scared to death the day of surgery and I know you are going to think I am nuts, but I'd have this surgery again tomorrow if I had to. I had it done on a Tuesday and that evening I was up and laughing and in no pain at all. On Wednesday I got up and took a sponge bath on my own and went outside for a walk. The nurses kept asking me on a scale of 1-10 what is your pain, and I would tell them 0. They did not believe me. On Thursday I took a full shower by myself and was walking slowly, but all over Mayo clinic. They made me eat of my choice off the menu a solid food, in which I ordered roast beef for lunch and an open face roast beef plate for dinner with mash potatoes. I then ate biscuits and gravy for breakfest the next morning. I have to say the surgery was nothing. It's adjusting to the after surgery affects. They released me from the hospital in 6 days, which was supposed to be a 7-10 day stay.Everyone is different so have a good attitude and Trust in the Great Physician and He'll guide you through anything. I do have issues with the thick saliva, but I feel that when I eat a sweeter diet that is when I get this. Nausea has went away pretty much and it's only been 3 months for me.My weight has gone from 207 to 136. I guess it pays to be a little chubby sometimes. God Bless You All that is going through this. You and your Familys are in my thoughts and prayers.

EugeneWA
Posts: 2
Joined: Sep 2009

Hi JMatson,

Is there any change on your son's vomiting symtom? My wife (44 yr old) had stomach sugery (4/3 cut) in May and she still has a lot of vomiting now (most salivation, some bile). The medication doesn't work. The doctor suggests the 2nd surgery. I am wondering if anyone get similiar suggestion.

EugeneWA

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