One patient with glioblastoma still alive nine years later
by candicane on Thu Mar 08, 2012 08:39 AM
had surgey jan 27 2011 ate soup after 12 days. small amount. milk produts dont work. do you get hot feeling sometimes. candycanicane
by bob102411 on Sun Mar 11, 2012 08:24 PM
I had stage 3 adenocarcinoma diagnosed in July 2011. Initially not operable. Five weeks of radiation (5 per week) and 6 weeks chemo (1 per week) with very few side effects. Trouble swallowing went away after second week of rad.
Esophajectomy on 24 Oct and remained in hospital four days. Walking 5-6 times a day in hospital with eight tubes hanging out of me (yuck). NO pain after surgery except in one shoulder due to a chest drain pressing a nerve. Left hospital with one drain (in neck), a J-tube for liquid feeding, and lots of stitches/staples.
Transitioned from liquid to solid food over 30 days and now eat everything. Just less due to smaller stomach. Weight went from 200 to 170 and now holding steady at about 173 (I'm 6'0 in) so this is a good weight. Most weight lost between diagnosis and end of rad/chemo.
Pathology of esophagus and lymph nodes removed showed NO cancer remained. Radiation killed all of it.
About a month ago, I had trouble swallowing some foods and found that scar tissue was narrowing the new esophagus in one area. I have had three progressively larger dilitations (a balloon inserted into the section and left for about a minute to expand it). All is well now and may have no more such problems depending on how the heaing progresses. In can always have more dilitations if required. They are not bad.
Now I eat anything if chewed well. Still stay away from steaks but may not really need to - just havent tried. All kinds of fried foods seem fine. Veggies are OK if cooked.
by Macidoodle on Mon Mar 12, 2012 01:56 AM
thanks for the info. i am now 2 months post surgery and eating just about everything, including steak...just in smaller portions. my difficulty is my hunger excedes the space i have in my stomach to contain food and sometimes i eat to excess. its a learning experience. nuasea is worse during the morning and improves throughout the day..i seem to eat better at night and able to tollerate a full meal at that time. gas is a problem and i pop mylanta like candy.i feel like i have a gas bubble with each swallow. if i can burp, im able to continue eating...if not game is over for at least an hour or two. i find walking after eating allows me to burb easier and return to normal. i try not to eat at least 2 hours prior to sleep. if not, once i lie down, i regurgitate the food. i cant drink while im eating either and do both seperately. over all, i appear to be making great progress.
by milliep on Mon Apr 02, 2012 02:52 AM
What is dumping? It has been 2 months since my surgery. I have been eating almost anything but Friday I experience pain, constipation then diarrhea and I am concerned that I need to be more specific on what to avoid.
by milliep on Mon Apr 02, 2012 02:58 AM
I appreciated your advice on the burping as I also have that. I am 2 mos. postop so learning to deal with constipation, diarrhea, eating and then experiencing the not being able to burp. I experienced alot of pain in the stomach during the constipation period and was not well for a few days following.
by Macidoodle on Mon Apr 02, 2012 06:03 PM
hi... dumping syndrone occurs after you eat something which no longer agrees with your newly redesigned system ( only way to know is through experience which food items they are) with in a matter of minutes or possibly hours youll be putting out poop faster than anything youve ever experienced and usually accompanied with bloat, stomach cramping and overall gasto distress. discuss this with your gastrologist if it becomes a major issue. im now on a new mwdication called domperidone ( sounds like a good merlot wine) which you can only get from canada ( not yet FDA approved here) my gastroenterologist put me on it and it has increased the speed of gastric emptying and controls the nausea.
by milliep on Mon Apr 02, 2012 10:23 PM
What foods did you find caused dumping for you? I am trying to learn what I need to avoid.
by Macidoodle on Mon Apr 02, 2012 10:42 PM
ar first it was milk related products..... now its bagels, butter, and foods high in fat content
by milliep on Mon Apr 09, 2012 04:42 AM
I was wondering how you are making out re eating? I am 2 months post op and have been eating food since the beginning of March. I only had to bouts where I was eating and drinking at the same time and I ended up with diarrhea, bloating and gas pain. I am more careful to not do that now. I still take a supplement for extra protein on days I do not have an appetite.
by doingfine on Mon Apr 09, 2012 11:07 PM
Hi Milliep,It is still early after your surgery. Things will get better. Be sure to give this time. It took me about 6 months after surgery to settle into a routine where eating was enjoyable because I wasn't getting the dumping and vomiting, etc. etc. I found that using Maalox Antacid & Anti-Gas tablets helped with the gas and bloating and gas pain. I still keep it handy. It is the multi-symptom tablet...not Rolaids, but Maalox. My doctor gave me a diet to follow after surgery which indicated I was to avoid fried foods, carbonated beverages, acidic fruits like orange, etc. No coffee or tea even the decaf kind for the first few months. I still cannot tolerate peanut butter (and I love it) and certain brands of coffee bother me even after 8 years. Best wishes to you. Just remember it will get better all on its own, but recovery is slow. Your body is learning a whole new digestive system.
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