Need input from TOTAL gastrectomy survivors-What do you EAT??!!

I am desperate for advice!!! My father had a total gastrectomy August 26, 2008. I will not go into detail about the horrific complications he has suffered, but life since his surgeries (yes, surgeries) has been no kind of life at all. As of today he has lost over 100 pounds and is skin and bones. So my question is: WHAT DO OTHERS IN THE SAME SITUATION EAT??!!!!

In an attempt to try to pack in calories and protein in a smaller volume, he has tried Ensure (a joke), and Pulmacare (caused bloating). Are there any other formulas (sugar and dairy free) that anyone has tried that seem to be tolerated well?

(He does eat "regular" food, but simply cannot consume enough to sustain a healthy weight.)

Any input will be greatly appreciated....thank you.

Oh honey, I am so sorry to hear about what your Dad has been through. I have been really lucky. I had a total gastrectomy in December of 2009 and I have been able to tolerate alot of different foods. I have lost alot of weight but I had the weight to lose. Don't forget, it is an ooper dooper gastric bypass so there is going to be a lot of weight loss. He just has to level off and maintain.

The only thing I can think of is for him to eat something every 2 hours..something high in protein. Can he drink carnation instant breakfast with maybe soy milk? They work for me instead of Ensure or Boost and they make a low sugar version of the instant breakfast that doesn't bother me.

Unfortunately, it is a lot of trial and error. I am just starting to eat sandwiches again. Haven't tried spaghetti yet, that was another stickler for me.

Did you speak to his Dr? Do they have a nutritionist in the office? If not, find one. There has to be an oncology nutritionist somewhere around you.

If I can be of any help, just email me. I can tell you what I have done and maybe some of those foods will stick for him.

Thoughts and prayers to you both!

Mel

Hi there!!!

Thank you soooooo much for your reply!! I almost cried when I read it, I guess because we are all at our wit's end...my dad is just pitiful. He was 68 years old and had JUST RETIRED 2 months before he was diagnosed. In the last 18 months, he has lost over 100 pounds. He now weighs around 145 pounds. This is a man who used to stand 6 feet tall and was a huge presence. Now he's a stooped over, frail old bag of bones. Our whole worlds have been turned upside down.

It's 6:20 am here and I've got to get ready for work but I will write more when I get home this afternoon. I have some questions to ask if you don't mind. In the meantime I'll pass along your suggestions to my mom. She is grateful for any advice as well as she is my dad's main caregiver.

Talk to you soon,

Laurie

Hi Laurie!

Ask any questions you would like...I am here for you  :)

I may not have the answers but experience is the best medicine...

Talk to you later,

Mel

Dear Laurie and Mel, My mother (63 years) was diagnosted with tumor in her stomach. Biopsi was taken and they said the result will be ready tomorrow.

Is it true that surgery is the only option available for stomach cancer?  I heard that there are many type of stomach cancer.  May I know what type did Mel dan Laurie's father have? and what stadium were you diagnosted? Is the Surgery itself a life threatening situation? 

Pardon my writing mistakes since English is not my primary language.

Thanks in adv, 

Lisa

Hi Lisa!

As far as I know, surgery is the best option to cure stomach cancer. True stomach cancer not lymphoma. Lymphoma can start in the stomach and is highly treatable with chemo. I had the most common form of stomach cancer which is Adenocarcinoma. I was stage 4 cuz it had hit my liver.

Surgery is time consuming and dangerous. But it also depends on what other underlying health conditions are present. I am only 49 and in good health besides the cancer so I did really well. If your mom has a heart condition or diabetes, I am sure those would factor into her outcome.

Take it one step at a time. Wait for the results and see what the dr says. If you have any other questions after that.. ask. I will be here :)

I will be praying for you and your mom.

Mel

Dear Mel, would you please take a look at what the biopsy report say?

Nature of Specimen: Gastric biopsy

Gross:  Specimen consists of pieces of grey white tissue together measuring 5mm in diameter.  Processed entirely in 1 block.

Microscopic: Section contains multiple fragments of gastric mucosa from the antrum showing hyperplastic gastric antral mucosa with ulteration and infiltration of the gastric wall by small clusters of malignant glands lined by columnar cells with vacuolated cytoplasm and enlarged hyperchromatic nucleus resembling signet ring.

Diagnosis: Gastric biopsy: Poorly differentiated adenocarcinoma of the stomach infiltrating into muscularis mucosa.

I just got it today from the doctor. He said surgery is the only option.. He cannot tell what stage her cancer is, cause it need futher examination. He predicted it is at stage 2 or 3 becasue it is not yet affected other organs. He sent us to surgeon tomorrow.  What do you thing about the report, Mel? 

Thank you for your support and prayer.. that is what we need the most.  May Jesus bless you..

Sincerely, Lisa

Hi Mel and Lisa!

Lisa, I am so sorry to hear about your mother's diagnosis. I have learned AFTER my father's surgery that sometimes chemotherapy can be administered before surgery. I urge you to research this as much as possible. I do not know where you are located, but are there any cancer centers near you that have doctors that specialize in gastric cancers? Look at this website: www.mdanderson.org . It is a wonderful resource and perhaps you can get some useful information. I only wish that my family had researched my father's situation before his surgery. We were told that chemotherapy was not effective at treating gastric cancer and surgery was the only option. I know differently now. These days, you have to be your own patient advocate. The more knowledge you have, the better. Do not be afraid to question the doctor's advice. Get another opinion if possible. Please keep us updated on how things progress. You and your family will be in my prayers.

Mel,

Good morning! Again, I am rushing to get ready for work, I've got to start getting up earlier, haha!! Anyway, first question - do you take any enzymes prior to eating?

What were your symptoms prior to diagnosis?

Did you have chronic reflux before your diagnosis?

What kind of protein do you eat the most?

How many calories a day have you been told you need to consume?

Ok, that's enough questions for now! :-) I'm just trying to get comparative information. We know NO ONE who is "in the same boat" as my father. Any tiny bit of advice is always helpful...

Hope you have a great day! Again, thanks for taking time to answer my questions! Look forward to hearing from you...

Laurie

Hi All!

Lisa, I had chemo BEFORE the surgery to shrink the size of the tumor. I wasn't a candidate for the surgery until after I finished my chemo. The chemo made me cancer free so it does work. I agree with Laurie, get a second opinion if at all possible. I spoke to anyone that would listen and got a lot of opinions before we did anything.

Laurie, good morning!

I take no enzymes... and I seem to do fine.

I really had no symptoms in the very beginning. I felt  a tightening under my breast bone but it would subside. 6 months later, I started to have nausea and vomiting but we all thought I had a ulcer. I have always had stomach issues, nervous stomach, IBS so cancer never ever occurred to me.  I had lost 30lbs but I wasn't eating well. My GP scheduled an endoscope and even my gastro was shocked. He really didn't expect to find anything. To have stomach cancer under the age of 50 was a one in a million shot. Why cant I be that lucky with the lottery?  :)

As for protein, I eat meat and chicken when it will stay down. Chicken can be too dry for me and it gets "stuck" sometimes. I eat alot of yogurt just watch the sugar amounts.  I eat alot of fruit and cheese too. Buy the cheese sticks that they sell as snacks. They are small and go down easy. I really want your Dad to try the carnation instant breakfast low sugar. My oncologist wants me to drink two of them a day. Try them with soy milk. Make a smoothie or a shake with it. I put in a banana or strawberries. Peanut butter is a great add in as well. Blend it together and it is very good.

Never really have been told a caloric intake amount, I really try to eat something every two to three hours. I snack all day long.

He has to force himself. I know that is easier said than done. In the beginning, I would watch the clock and eat every two hours just a few bites.. the cheese sticks are really good for that...maybe just half at a time to start. Small bites and chew really well. It will get his system used to eating.

Let me know how it goes. If I can think of anything else I will let you know.

Lisa, keep us posted please.

You and your families are both in my prayers.

Mel

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Dear Laurie and Mel,

We have just visited surgeon. He said that surgery is the only option and it is ok if we want to do it next week (do you think is it really ok to delay it until next week?)  Now we are away from other family members (we are now in the neighborhood country) and I’m confused whether we should go home first and come next here next week or just stay here and do the surgery right away or maybe we should find other surgeon in our country.  Really confusing…

After visiting surgeon, we go to other hospital (cancer specialist) they do not do surgery, only radiotherapy and chemotherapy.  Since you said that we should chemo before surgery, I ask the Radiotherapist and Oncologist there.  He said he wouldn’t recommend chemo prior surgery because of her age and condition (she has lost much weight)  If would be dangerous if he do the chemo and then she become  too weak to go on a surgery.  He said to come back to him after the surgery to see if there’re other treatments necessary after surgery.