CancerCompass message board discussion started by TriGreg on 11/12/2007 http://www.cancercompass.com/message-board/message/all,17901,0.htm Fri, 05 Sep 2008 00:00:00 GMT Fri, 05 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi. I'm new here. I've been reading through the forums, and thought I might share some advice from our experience. My wife was diagnosed in Feb 2004 with stomach cancer at the GE junction. She was 34. She had a complete gastrectomy followed by 6 months of chemo and radiation. The cancer came back on her lungs in Aug 2005. Today she's being treated at MD Anderson, and is getting ready to start her 5th clinical trial. They say she has less than 12 months to live.Life after gastrectomy is tough for the first 6 months to 1 yr as the body adjusts to its new system. You must get protien and fat into the diet. My wife made high calorie / high protien smoothies every day for a year. It'd take her most of the day to drink one, but she could get 1200 calories in a 12 oz smoothie. Also, Smothie King has a smoothie called "the hulk" that is high calorie and designed for cancer patients. Avoid fried foods and sweets. Put cream or gravy on everything. Eat many small meals. Peanut butter can be your best friend when blood sugar drops. It will help it recover but not too much to start blood sugar spikes and swings. Now, her diet is fairly 'normal' as she's learned what she can tolerate and not tolerate. She is holding her weight steady and most would never know she's sick. Many will tell you about this diet and that berry that will cure the disease. If the patient has had a total gastrectomy, ignore them. they have the best intentions, but someone with no stomach cannot eat enough food to get the calories needed to survive on those diets. Also, the stomach is where most nutrients of the so-called 'cure foods' are absorbed. With no stomach, there's no absorbtion. I'm not saying these things are bad - they just don't work for a gastrectomy patient.If you are stage IV, consider clinical trials. Yes, they are a gamble, but we have found that they have less side effects and do have some postive effect. My wife wouldn't be alive today without them.We've been deep in the battle for nearly 4 years and have done tons of research. I've also founded an organization for caregivers of young adult cancer patients, so have helped people around the world. I'd be happy to answer anything I can, based on our experience. I'm not a doctor - just a guy trying to make the best out of a crappy situation.Good luck!Greg  TriGreg Mon, 12 Nov 2007 00:00:00 GMT Thank you for your words. I had 80% of my stomach removed Dec 26,2006 and am having a very hard time eating. i have lost 73 pounds, and really can not afford to lose anymore. I will try the smoothies. Did she have trouble sleeping? I have to sleep in a hospital bed, or I get sick.i am so sorry for the battle you and your wife have fought. I am right now waiting to find out the results of a biopsy taken last Friday. I feel like this is a disease we just don't win. Katrina1 Tue, 13 Nov 2007 00:00:00 GMT I, too, am sorry for what you are going through.She has to keep her head at least slightly elevated. So, not in a hospital bed, but sleeps on 2 or 3 pillows. We have a friend that had a partial gatrectomy and he had to sleep with his head more elevated than my wife. He has since had a recurrence and they went in a took the rest of his stomach and his esophagus and is now in remission. My wife lost a bit of weight too. She was lean to start with, but lost about 30% of her body weight.Some things she's learned is to make sure she has protein with every meal. It slows down digestion and balances out her system. Also eat rich foods such as spaghetti, lasagna, foods with gravies, etc. Now, with a reduced stomach, you can eat anything your body can tolerate and not worry about gaining weight, so have fun. I know that's not always easy, but at least its a bright side.Hang in there. You can win!Greg  TriGreg Tue, 13 Nov 2007 00:00:00 GMT I agree, hang in there! You guys CAN win this battle. My father had about 70% of his stomach removed on July 2007...with a bunch of effected lymphnodes. So far he's pretty much back to normal. The protein shakes help alot. Working out is a hobby of mine so I always make him a protein shake everyday. (after I have mine hehe) Steeda Wed, 14 Nov 2007 00:00:00 GMT greg, Thanks for the info. I'm about to to have my stomach removed. I was diognosed with stage 4 stomach cancer in june. The chemo has reduced the tumor to the point that surgery is an option. I hope it's worth the effort. to I'm 51 and I'm just trying to buy some time. Currantly I feel good eat alot and my weight is steady. I do not feel like I'm terminal. However everyone is telling me that is will return and surgery will no longer be an option. Where did she have the surgery and would she do it again? I wish you both the best of luck. My thoughts are with you.mark   markc Tue, 20 Nov 2007 00:00:00 GMT Mark, I'm so sorry to hear about your diagnosis but am thrilled that you've responded to the chemo.She had her surgery in Dallas at UT Southwestern by Dr. Michael DiMaio. He specializes in this surgery. I don't know where you live, but do whatever you have to in order to get to a doc who know what they are doing. We have a friend that had their surgery in a small town hospital and had to have it again when the cancer came back at the same spot. MD Anderson, Memorial Sloan Kettering (NY), et al are where you need to be. Having said that, she'd definitely have the surgery again. It's a big deal and a life changing surgery, but it's better than the alternative. The friend I mention earlier has done it 2 times now. His last surgery was in July. We saw him a couple of weeks ago and he looks great.You said you are stage 4. Has your cancer spread beyond the stomach? What part of your stomach is the cancer in? My wife's was in the top, which is a far more aggressive cancer. If its in the lower, the survival rate is much higher.And, there are some new drugs that are on trial now that some patients have had a total response to. Don't believe you are doomed. You may be incurable. You may not. But, with the new drugs, you may be able to manage your disease for years.Get to one of the major centers. It is worth it. If you have any other questions, feel free to ask.Greg  TriGreg Tue, 20 Nov 2007 00:00:00 GMT Greg,Going forward toward surgery it's nice to hear that she would do it again. My tumor is also located in the upper part of the stomach. The decision to remove my stomach will made after they open me up. If they do not remove my stomach. I'll be in a trail going on at stanford. Lucky for us it's 15 minutes from the house. thanks for your concern. keep fighting.mark markc Wed, 21 Nov 2007 00:00:00 GMT