CancerCompass message board discussion started by SASSYB on 7/4/2008 http://www.cancercompass.com/message-board/message/all,25717,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ i started protein shakes 3 days ago....only in am...one glass...having refux...really bad atnight. have supper at 6pm...go to bed raised on pillows at 10pm...wake 3 hrs with horrible relfux....can anyone help me please...really need to talk to someone..had ivor lewis ,,june 5 .08i thought this reflux was going to a thing of the past!can i elevate my bed under the mattress??? SASSYB Fri, 04 Jul 2008 00:00:00 GMT You are not that far out of surgery, so it will probably get better. Husband had small amount of reflux problem after surgery, but not too bad. Had another surgery at Christmas a refux problem emerged again and it took a while longer to stop this time. He slept mostly upright in recliner till it settled enough for him to come back to our bed. We raised the headboard by about six inches with blocks under the legs and the gravity helps keep the acid down. Many small meals help too. You are going to have to retrain your body...it has been less than one month from MAJOR surgery and your digestive tract has been reworked, so try to be patient and maybe keep diary of food. You might identify certain culprits that you just can;t digest yet. My husband has a few that can still cause problems even after being 2+ years from Ivor-Lewis. Sometime after the surgery, we added domperidone at bedtime (similar to Reglan which he reacted to), and the reflux problem became pretty much a thing of the past. We feed him frequently and never too much, and get up between 4 and 5 am (occasionally earlier) to make Cream of Wheat, then he goes back to sleep in his recliner, so he sleeps in bed part of the night. Trying to sleep in bed too long led to distress with his stomach, so it's a pain but makes a huge difference in his quality of life. Guess that's part of what we mean when we say the "new normal". Good luck with it. It really does get better.  tongrenhealer Fri, 04 Jul 2008 00:00:00 GMT THANKS U SO MUCH! SASSYB Fri, 04 Jul 2008 00:00:00 GMT Are you on any acid blocking meds?  You should be on Renitidine or Omeprazole, Prilosec or something like that.  I take 2- 20mg omeprazone in the morning and 2 again at bedtime.  Your surgery is very recent so peristalasis probably has not really begun yet.  The muscles will recover and you will be able to keep things down better in a few months.  Yes, elevate your bed and get a wedge.  You can order from JC Penney or purchase at a medical supply house.  I recommend the 12 ".I slept in a recliner at about  40 degrees.  It took almost a year before I graduated to a 12" wedge in my bed and our bed was up on 2" bricks at the top.  The acid really burns, tastes terrible, and is very annoying.  My surgeon told me the biggest danger is aspirating stomach contents into the lungs.  I did that once. In our family, we found milk products produce acid.  Try using lactaid or cutting out milk for a while and using soy.   Although it is very troublesome, don't let it get you down.  You will gradually find the foods to avoid, foods that do help and once the peristalasis kicks in the acid will not come up as much.  This may sound crazy, but I found that a small amount of banana or peach before retiring helped.  Saltine crackers will also absorb the acid and I keep Rolaids Multi-Symptom pills on the nightstand.  Even now, 4 years out, I have bouts of GERD now and then, but not enough to be upset about.  My doctor gave me a GERD Diet, but I don't follow it. Best wishes as you recover, I'll be praying for you.  doingfine Fri, 04 Jul 2008 00:00:00 GMT yes , i am taking prilosec. one at am and one pm.....am on lactaid milk.who follows you? cancer md??or g.i.md???? SASSYB Fri, 04 Jul 2008 00:00:00 GMT In our case the gastroenterologist who came up with dx via endoscopy does the follow up for gastro symptoms. Oncologist keeps tabs on cancer follow ups (bloodwork, CT's, monthly follow up visits for port flush/infusion staff and every 3 months with oncologist when NED). Gastroenterologist prescribes daily protonix, and nightly domperidone since that's his specialty for treatment. PCP also keeps her hand in it all by seeing him every 3-6 months depending on where we are in treatment. He sees gastroenterologist every 6 months to a year, also depending on how the gastric symptoms are. He likes to do endoscopy annually, but we have had to delay it twice due to recurrence. He prefers not to go in while we are treating (might feel differently if there were symptoms indicating scope). Also followed up with surgeon several times after surgery, and she saw him fairly regularly during the first year post op also, and stayed in touch with oncologist. Follow up has been very regular from everyone involved. tongrenhealer Sat, 05 Jul 2008 00:00:00 GMT  On 7/5/2008 tongrenhealer wrote:In our case the gastroenterologist who came up with dx via endoscopy does the follow up for gastro symptoms. Oncologist keeps tabs on cancer follow ups (bloodwork, CT's, monthly follow up visits for port flush/infusion staff and every 3 months with oncologist when NED). Gastroenterologist prescribes daily protonix, and nightly domperidone since that's his specialty for treatment. PCP also keeps her hand in it all by seeing him every 3-6 months depending on where we are in treatment. He sees gastroenterologist every 6 months to a year, also depending on how the gastric symptoms are. He likes to do endoscopy annually, but we have had to delay it twice due to recurrence. He prefers not to go in while we are treating (might feel differently if there were symptoms indicating scope). Also followed up with surgeon several times after surgery, and she saw him fairly regularly during the first year post op also, and stayed in touch with oncologist. Follow up has been very regular from everyone involved.what time of day do u take your last prilosec??i slept in recliner last night and had no reflux.did u take any protein supplements at first?....how much wt did u loose???i am down 18 lbs atthis timeand the surgeeon told me to start protein powder.....it fills me up..i have to kind of force myself to eat after...drinking them....do u mind me asking your age?did u have an actual tumor?..i did not..hve not seen an oncologist..my g.i. guys...told me to call one!?to follow up with him!!oncology that is....i find it a little unnerving that my sugeeon..handed me off to the gasto enterologist and now he is handing me over to oncology...my surgeon ..told me 2 days before that that i didnt need to see oncology.....leaving me in a bit of a bind...dont know who to talk to from here?....think i should go back and talk to the surgeon....My g.i. Dr. is overworked.....nd has no time.....that is a "little" frightening....i think..i would get more support from the oncology dept....too soon to be on my own...i think!!....any suggestions appreciated.thanks again k!!!!. SASSYB Sat, 05 Jul 2008 00:00:00 GMT I see my oncologist and thoraic surgeon every 6 months.  I still have to have a PET/CT scan every 6 months.  My Radiologist sees me yearly.  One of the biggest supports I have is my family doctor.  He came from China and while in China he performed over 500 EC surgeries.  When he came to the US he went into Family Practice and the Good Lord had him in our local doctor's office.My surgeon is the one who prescribes my omeprazole, but the family doctor is the one I run to with all sorts of things.  He told me EC is very common in China (they don't know why) but recovery is also high.  He said receovery is a slow progression.  He also suggested I discontinue all milk products for a couple of months and then I added them back very slowly along with using Lactaid.  Now I have no problems with cheese or yogurt.  Ice cream and big glasses of milk still make me have lots of acid.Could you ask your doctor to increase the Prilosec?  In the early stages of my recovery my surgeon suggested using Amphogel.  It is difficult to find and must be ordered by the pharmacy, but it does give some extra acid reduction without producing diahrreah or constipation.  I used that in the beginning too.Sorry you are having trouble.  It is a difficult thing to get used to.  I was fortunate to have several people who had this surgery to consult along with my Chinese doctor.  It has been 4 years, but on rare occasions I still vomit gastric acid.  doingfine Sat, 05 Jul 2008 00:00:00 GMT I just read your other question.  I am 62 and was diagnosed at 58.  I take my omeprazole generic for (prilosec) around 9 PM.  I believe you are in good hands with your gastro man.  I don't have a gastro doctor, just my family doctor for everyday type things, but he is great.  Glad the recliner worked.  Did I tell you I was in my recliner to sleep for over a year?  Actually, closer to 2.    Give yourself time.  It will get better.  The caregiver is giving you good advice.  The diary is an excellent tool and I kept a food diary for about 8 months. Also, small frequent meals for now.   Don't worry about the weight loss.  I thought I would never gain weight and never get the feeding tube out, but alas.....now I am concerned about "overweight".  I am back to 3 square meals a day and nibbling on crackers in the middle of the night.  doingfine Sat, 05 Jul 2008 00:00:00 GMT  On 7/5/2008 doingfine wrote:I just read your other question.  I am 62 and was diagnosed at 58.  I take my omeprazole generic for (prilosec) around 9 PM.  I believe you are in good hands with your gastro man.  I don't have a gastro doctor, just my family doctor for everyday type things, but he is great.  Glad the recliner worked.  Did I tell you I was in my recliner to sleep for over a year?  Actually, closer to 2.    Give yourself time.  It will get better.  The caregiver is giving you good advice.  The diary is an excellent tool and I kept a food diary for about 8 months. Also, small frequent meals for now.   Don't worry about the weight loss.  I thought I would never gain weight and never get the feeding tube out, but alas.....now I am concerned about "overweight".  I am back to 3 square meals a day and nibbling on crackers in the middle of the night.  3 sqares a day??can u eatmeat at all????we havent seen our family pract. yet.....so much to do last week.....how long did u takr the supplemental drinks??feeding tube was out the day i was discharged......now afraid of constipation...last week was diarrhea...after i stopped reg milk..........am on lactaid milk now...trying to get eggnogs and muilkshakes in for energy!!also...do u take a multivitamin..???  SASSYB Sat, 05 Jul 2008 00:00:00 GMT Hi Sassy,Let me begin by saying that my dad has not had surgery but he has had a lot of these symptoms. Daddy has a "12 wedge like someone else recommended. It has been a God-send! His esophagus was blocked by the tumor for quite a while making it impossible to swallow anything, even his saliva. When he would try to rest it wasn't long until he felt like he was drowning and would have to cough and spit up everything. The wedge helped with this tremendously. When he started drinking and eat some soft foods he tried to sleep propped up on pillows but reflux always woke him up. So....he's back on the wedge and going great.As far as weigh gain goes-you might want to try Juven. It comes in a packet and it is used to help patients gain weight and muscle mass. I have posted the link below. There are some great recipes of high calorie drinks/smoothies on the website. You can buy it over the counter but its usually hard to find. Our pharmacist orders it for us. Daddy also takes L-Glutamine 2x a day to help with weight and building lean muscle mass.Hope this helps!www.juven.com   GeorgesGirl Sat, 05 Jul 2008 00:00:00 GMT Supplements after surgery:  I didn't do well on them. I threw most of them up. I depended on poached eggs on toast, Liptons Chicken noodle soup, Campbells Chicken Noodle Soup and other types of water based soup.  I didn't handle creamed soup very well.  I did very well with pastas and enjoyed spaghetti and meatballs. My doctor suggested chili and I thought she was nuts, but it stayed down as long as I ate small amounts.  Yes, it is a real pain in the neck to eat small meals often, but in the beginning you have to do it.  Eat slowly and chew, chew, chew.  I also battled constipation and used suppositories, mineral oil and Phillips.  Of course, then I would eat something and have "dumping syndrome".  I had no problem with constipation after I began eating more fiber, but until my intestines learned what they were supposed to do I had a battle.  The dumping syndrome lasted for over a year.  I learned every bathroom in every store and rest stop in 2 counties and took extra underwear everywhere I went.  I tried to learn to laugh at it all and that made it better.  Just trust folks when they say it will get better. And, for some it gets better faster than others.  I was a slow-poke.  I eat meat, salad, bagels with cream cheese.  You name it, I eat it.  I did find that peanut butter doesn't sit well and I had a strawberry milk shake the other day that my stomach threw out.  Wow.  You had your feeding tube out the day you were discharged.  My doctor said I was "slow" and they didn't remove mine until 4-1/2 months after my surgery.  I couldn't eat sweets for a long time.  A year after my surgery I still threw up after eating something like cake. I have learned that I have a wonderful quality of life versus what I would have had without the surgery and treatment.  When I was diagnosed I was only eating soup because nothing would go down so now if I have some difficulty I just brush it off.  Oh, funny thing.  I cannot eat iceberg lettuce, but I can eat leaf lettuce and romaine.  Some people prefer to sick to smaller meals all their life. One thing that helps me a lot is I have a good friend who went through lung cancer treatments the same time.  He is still on tablet chemo and we can get together and actually laugh about our troubles.  We often say, we never thought we would sit around talking about "bathroom" things, but somehow all of our modesty went out the window with cancer treatment. I'll be here if you have any questions down the line.  Have you had much trouble with dry heaves?  I had those too for the first 8 months.  Talk to you later.  doingfine Sun, 06 Jul 2008 00:00:00 GMT Sorry I talk so much.  Yes, I took chewable multivitamin in the beginning, but now I forget most of the time.  I had a hard time swallowing in the beginning.  And, I did get very tired of the bland diet.  After I got my strength back I couldn't look at Campbells Chicken Noodle Soup for a long time. Then I ate to live, now I live to eat. doingfine Sun, 06 Jul 2008 00:00:00 GMT Hi Tongren Healer-It is so encouraging to hear that people are surviving this horrible disease.  My dad got the results of his biopsy (liver) and it was negative. Praise God.  He had his PET/CT scan last Tuesday and we will be meeting with the surgeon on Friday 7/11/08 to hear the results and the treatment plan.  I find hope every time I come to this message board.  I hope your husband continues to improve daily.  God Bless you both-Staci karrickrylee Mon, 07 Jul 2008 00:00:00 GMT Hi, my gastro dr told me to get Gaviscon over the counter. I take one before bed with water. (THey come 2 to pkg) I was having aspiration in lungs 2 times a wk. Haven't had any since. I also take Flintstone gummy vitamins because I can't take any with minerals, hurts like heck!! I really feel better since I tried this. Also found V-8 Splash strawberry/banana for breakfast. No pain or diarhea. I bought a adjustbale twin xl bed. I sleep at 60 degrees. The 12" wedge pillow is ok but it is so hard and I move alot when using it away from home. Hope this helps. mb monkeyb Mon, 07 Jul 2008 00:00:00 GMT