One patient with glioblastoma still alive nine years later
by jch3200 on Mon Oct 04, 2010 12:19 AM
Hey, can any one shed some light on what the quality of life is like after a total gatrectomy? What do you eat, can eat, prevent dump (which I heard is terrible), exercise, and such. What info before I go that route, although it sounds that that is the best path for better "curitive" results. I have stage 1b. or early 2, no lymph nodes involved in CAT or PET, doing chemo now with 4 wks. left, and then surgery maybe Dec. or Jan. Thanks, Jim
by Waffles10 on Wed Oct 06, 2010 10:43 PM
I can only give advice as a caregiver. My dad was diagnosed with stage IIB stomach cancer in August last year. He had all his stomach and all his esophegous removed (long story, it was only meant to be the stomach but he had major complications in surgery and they ended up taking loads of stuff out, not due to cancer but just everything going wrong). Anyway it has been about 4 months since his last surgery to reconstruct everything and he can eat most things now just smaller portions and many times a day. But it is hard going, especially in the beginning and you lose loads and loads of weight which is the hardest part. Dad has lost 30 kilos since the last operation. The thought of some foods puts my dad off more than eating the food. Like he will think he wants something, go to eat it and he just can't even stomach it. He sticks to all the things that work well for him - homemade soups, cheese and ham on toast, pasta, lasagne, mashed potato, biscuits with his tea, ice cream, he also loves dark chocolate and eats that throughout the day and he has at least 3 ensures a day which really makes a difference for him. It is a tough operation and hard work but if you can push through and it's caught before it spreads then it is worth it!
Unfortunately we have just found out my dad's cancer is back and is in different spots, but we are not giving up yet and he starts on chemo again tomorrow to try and contain it and hopefully shrink it back. He wasn't able to have follow up chemo straight after the operation as he was too sick from complications. So my advice would be to make sure you get the follow up chemo as well as the chemo before the operation! It gives you the best chance.
Oh and to add some positives. My grandma also had stomach cancer, had her stomach removed over 30 years ago when she was 61. And she went on to live another 29 years and died peacefully in her sleep at 90 a year or so ago.
Hope everything goes well for you.
by jch3200 on Thu Oct 07, 2010 01:28 AM
Hi Waffles10, I am so sorry to hear about your dad, what a fighter he must be. Got to respect a man that can go through that much and still hang in there. I have heard about the weight loss, and I really don't have that much to lose with the chemo claiming about 25lbs.
But you gave some good encouragement, especially with your grandmother, your whole family must be a group of special people, and it sound like they are lucky you are a part of the gang. Hang in there, your dad will be in my prayers. Jim
by Waffles10 on Thu Oct 07, 2010 09:24 AM
Thanks so much Jim. It is pretty tough we are a super close family - dad is only 62, he was 61 when all this started. He has been through hell that's for sure but he's still here fighting on :) We are just hoping and praying it will remain that way for a while yet. He has been doing really well with his eating this last week so that is a start.
Keep your spirits up and make sure you surround yourself with family and friends. They will help get you through. And keep being positive. That makes such a difference. There are loads of people that do really well after their operation, can eat everything fine and get back to a normal life. I'm sure you will be one of them! Will be praying for you.
Take care of yourself.
by Mel5787 on Thu Oct 07, 2010 06:17 PM
I am a 50yr old female that had stage IV stomach cancer diagnosed in June 2009. It had hit my liver. After 6 rounds of chemo, I was cancer free. In December 2009, I had my entire stomach, gall bladder and part of my liver removed. I have been cancer free ever since :)
After having many opinions, that seems to be the best way to go.... chemo to shrink and then the surgery. My surgeon recommended a total gastrectomy even after having no signs of cancer present in me after the chemo. He said that they don't know why but if the stomach is left in, the cancer will be back usually within a year. That was all I needed to hear so out it came :)
I have lost over 80lbs. You have to remember that you are having an ooper dooper gastric bypass lol.. thank goodness I was chubby before all of this started.
Trial and error. My Dr told me this and it is true. My hubby is very supportive and had gone onto many websites for gastric bypass support and gave me lots of ideas from them. Also, my surgeon oncologist has a nutritionist on staff and she was wonderful!
Keep in mind that you will only be able to eat small quantities so what you eat matters. No white flour and not alot of sugar. Don't be afraid about dumping... it scared me to death so I found myself avoiding all sugar... that isn't necessary. Your body will be able to tolerate some sugar. Unfortunately, you have to determine how much and you will know. I know that I can have a couple of cookies... a piece of cake.. you will be able to tell.
Milk seems to bother me.. it may or may not bother you. I can have small bowl of ice cream but I can get a little gassy from it. I am going to try Lactaid for my cereal. My Onc wants me to drink 2 low sugar carnation instant breakfasts a day but that much milk bothers me so I am going to try the Lactaid.
Otherwise, I eat everything! Pizza, Chinese food, Mexican.. small quantities and chew good :)
I love yogurt with fruit in it... I love fruit, salad.. bread is OK but can get "stuck". Feels like it wont go down.. chicken can do that too and spaghetti... you will learn.
You cant eat too much either. You wont feel good. In the beginning, try to recline or lay down after you eat. It will help.
I have started to exercise. I walk around a local reservoir here. It is 1.6 miles and right now I feel it. But you have to remember that chemo knocks you on your butt and then the surgery.. which is a major one.. so it will take a while to get your strength back. Both of my Drs encourage me to exercise but just start slow.
If you have any other questions let me know... I am living it :)
Good Luck and my prayers are with you :)
by jch3200 on Fri Oct 08, 2010 01:25 AM
I appreciate the info. The problem I now see is that I was 6'1" 204 when this started, lost 30lbs with the chemo and still have 3 wks left, I got a 2 wk break due to blood levels and not being able to eat. Am eating now, but waiting for the finale 3 wks. If I have my stomach removed, and I know this is the protocol, I really can't afford any more weight loss, I think the cure may kill me??? So I am not sure what will happen. But at least if I do survive I will be able to eat most things, and just have to learn what to avoid, and eating the smaller amounts. Thanks again for the help. Oh, and happy 1 yr. surviving free of this dease. Keep going.
by Mel5787 on Fri Oct 08, 2010 02:26 PM
I agree... you are between a rock and a hard place... BUT... you can gain the weight back. I have heard people on here say they have done it.. so it isn't impossible.
Personally, I would rather be too thin then have the cancer back :)
My biggest problem is breakfast. I was never a big breakfast eater and I am still not.. It is 10:30 am here now and I should eat something. If you make a regiment and follow it, you should be good. General rule of thumb, eat every two hours.
Keep us posted.... God Bless :)
by rickjenn on Fri Oct 08, 2010 04:33 PM
Hi Jim, Sorry to hear that you are having to go thru this, but at least it sounds like it was caught relatively early. At first I didn't respond because I did not have a total gastrectomy -- only partial. I know there are different schools of thought on whether to remove the whole stomach or just part. I have not seen any data on whether survival rates are better with total vs partial gastrectomies. In my case the stage 3b adenocarcinoma was at the GE junction, and I had surgery first to remove the top part of the stomach and lower part of the esophagus. That was followed-up with 5 months of chemo (5-FU) and radiation. Two years and two months later there are no signs of cancer and I am feeling pretty good -- back to work and staying active with biking, skiing, a little jogging etc. Overall, I lost about 35 pounds during treatment and haven't gained back a pound, but I am getting used to thin (6'0" and 150 lbs). In my case, I am glad that I still have part of my stomach and that I have learned to manage the changes in eating, but time will tell if this will result in a "cure". I don't know the specifics of your case or why total gastrectomey seems to be the best option, but given the relatively early stage, I am curious why a more targeted partial gastrectomy isn't an option. Best wishes with chemo and whatever is decided with surgery. Rick
by jch3200 on Tue Oct 12, 2010 12:58 AM
I have wondered the same thing. Per my surgeon from a very prominate hosp. He stated that this is protocol? His theory is that if we get the tumor with chemo, a "root" will still remain and we have to take the root out also. His experience is that unless you take the whole stomach then you risk return of the cancer. I feeling is, to use his analogy, if I have a root in my garden, I don't take out to whole garden only the part with the root. But this is what he said, so we look at total removal. I am still concerned about this, and am also looking at alternative methods. he also recomment chemo after surgery in case there are micros floating around that need killed, but if the tumor is contained in the stomach and you remove it then it should be gone. Also we all have mircrobes in our body and with a change in diet, boost immune system and alkiline my system I should be able to fight off any of the other microbes in my body. Cancer can grow in an alkiline system, only in acidic one. So we'll see what happens after I finish my next round of the ECF starting Fri. for 3 wk.
Sorry, that's can't grow in an alkiline system
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