Life after an Esophagectomy

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Life after an Esophagectomy

by whitejaw on Mon Nov 22, 2010 10:11 PM

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My father is 64 years old. He had an esophagectomy 5 years ago. His enitre esophagus was removed, along with part of his stomach. The remainder of his stomach was stretched to make a new esophagus. They also removed his spleen, due to surgery complications. He chose not to do chemo or radiation, and just change his diet and lifestyle. He has been cancer free ever since! Thank God! After his surgery he had all the regular symptoms, the reflux, fatigue, and vomiting. Most of that has subsided. The thing he suffers from most now is the reflux. He has to sleep in a recliner still. We have tried the vinegar, reflux medications, sleeping on his left side, or propped up, not eating 3-4 hours before bed, everything. Now, he has also developed a mucus problem. He swears that he will end up choking on it. I guess what I am wondering is if anyone has any tips or suggestions? Also he is curious about the quality of life when he gets older? I look forward to your feedback. Thanks.

RE: Life after an Esophagectomy

by onceaponatime on Sat Apr 02, 2011 01:15 AM

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I am 63 and had my esophagectomy 21/2 years ago. I also had esophagus, and part of my stomach removed. My surgery took longer then expected due to the fact my esophagus was in the wrong place. I was fortunate and didn't need chemo or radiation because my cancer was caught early, and was so thankful for that because I was so weak and so sick didn't know how I would ever get through it...but many do!  I am happy you father still remains cancer free...Mucinex may help him, it is suppose to be a very good over the counter med. to break up the mucus. Hope it will help him. It's amazing what they can do but, it was quite the surgery and leaves a lot of side effects. I have been very sick lately and the Dr. first checked my gall bladder, Was so sick last week went to Dr. again and they sent me to the hospital bucause of my past history. After much testing found out I have a gastric ulcer, polopy, and red irritated area in the stomach. I was relieved to find everything was benign. I take 2 protonix a day, with 4 carafate. I have taked the protonix for a very long time, and after surgery took carafate for awhile. Feeling better then I was but, still not great yet. Does you father take meds for ruflux? Pro ton pump inhibitors such as protonix, nexium, prilocex etc.?  I have a hard time getting in the right position ever since my surgery, I feel when I lay down that my insides aren't in the right place and toss and turn to get more comfortable and ease the pain, and I sleep on 3 pillows. So ~ as far as your dad's quality of life when he gets older is hard to say, we never know what can happen. We do our best and hope for the best. Regular check up's, cat scans, endoscopic e xams are important. I also had a pet scan after my cancer was found by endoscopic exam but, the pet scan didn't show my cancer. My surgeon always recommends a cat scan instead. Although things aren't normal and wont be, we have a lot to be thankful for and have to try and do out best. Good luck to you father. My heart goes out to all who have had this surgery..

RE: Life after an Esophagectomy

by Brian58 on Sat Apr 02, 2011 08:29 AM

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Life after an Esophagectomy goes on!

I'm 52 yrs old and 2-1/2 yrs past what I thought was the most successful surgery.  I never had the radiation or chemo, but had the full esophagectomy with thoracotomy and 40 lymph nodes removed.  Recovery was hard, but I was back to work in two months, went from 185 lbs at surgery to 143 lbs after 5 months, and returned to my 200 lbs norm after 18 months.  A very good quality of life returned for me in six months, obviously changed, but not objectionable.

 I have to sleep with a wedge pillow, normally on my back.  I occasionally can sleep on my left, but not on my right side or I will aspirate, which for me is the worst outcome of side effects.

Recently, my EC has returned in other locations and so I now know that this is not curable, but it is treatable.  I have some battles in front of me, maybe greater or maybe less than the first time around, but I will approach it the same way and enjoy whatever outcome.

I'm pleased to read the stories because of the unquestionable will of the humin spirit, and the goodness that CC has provided for sharing and understanding.  I know that all challenges are relative and mine is small in comparison to many, but my wish is for nobody to ever give up hope, love, and friendship.

Brian

RE: Life after an Esophagectomy

by doingfine on Tue Apr 05, 2011 09:18 PM

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I am a 7 year survivor.  I am at my maximum dosage of omeprazole.  The doctor said the only thing I can do now is stay on my acid reflux diet.  We broke down and got an automatic adjustable twin bed set so I can sleep very well prone.  If I slip down or slump over, I aspirate.  Thank God it has been since October, I think since I last aspirated.  I still have problems with acid, but not as bad as I did when I was off the diet.  No coffee (I cheat and have one in the morning), no carbonated beverages, no fried foods, and no high acid fruit juices.  I do purchase low acid orange juice and have a small glass in the morning.  Nothing after 5 PM.  Oh, I do eat one yogurt daily.  If I don't do that I take acidophilus.  That helps break down the food and fats.    All in all, the acid is not bad considering we dodged the bullet that would have taken our lives.  Thank God for that. Best wishes.

RE: Life after an Esophagectomy

by monkeyb on Fri Apr 08, 2011 11:58 PM

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It's been a while since I visited, but 3/25/08 was my three year post esophagectomy at Mayo Clinc in Jacksonville. I had no chemo or radiation. After 2 year check up, I was healthy as I've ever been with normal blood work. My blood pressure runs really low and I think I get low blood sugar sometimes after eating too much. I pop a hard candy and return to normal. I had been aspirating alot, but now I eat vanilla ice cream before bed and I don't aspirate. If I miss the ice cream, I always do though. I went from 190 lbs to a steady 135 lbs. I still get rapid heart beat sometimes around 30 minutes after over eating. My first friend on here was Eveyln. I hope her family is doing well. I always come to the message board whenever I feel alone, it's is hard for my family and friends to understand all the side effects:( But I'm thankful to my doctor (Bradley Trope) for guiding me in the right direction. I too sleep on a adjusted twin bed or the lounge chair. I get regular massages for my hips because of the pressure sleeping sitting up causes spasms. On a positive note, I have two beautiful granddaughters who make my struggle worth it. My heart also goes out to all of you!!

RE: Life after an Esophagectomy

by JenFl on Sat Apr 09, 2011 03:27 AM

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My 70 year old mum had an esophagectomy on Jan 24th this year.  She was also very lucky and did not need chemo or radio as they found it early. They tested 20 nodes and the cancer has not spread. She has lost over 30lbs but has stabilised.  The worst thing so far is that she is just about to go back for her 3rd dilation as the scar tissue has formed and resricted her throat and this means she is still only on liquid food. The Dr has said this is fairly common. We still have long recovery journey ahead, but I am feeling there is light at the end of the tunnel. Like most others we had not heard of this cancer until she was diagnosed - thank goodness we have been treated by specialists in this area.  Her GP said it was a death sentence, so we are so thankful she is still here with us and looking like she will be for years to come. The surgeon said he has performed this procedure on an 84 year old and he is doing fine. Here's hoping a long life ahead for your father as well.

RE: Life after an Esophagectomy

by srasmussen on Sat Apr 09, 2011 01:48 PM

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I'm 64,diagnosed with esophageal cancer 3 1/2 years ago, stage 3.  Had chemo,radiation, and was ready for esophagectomy.  Was then discovered the cancer had spread to my liver.  Surgery canceled and sent home with a death sentence of 6 mo. to a year left.  Started radical chemo for 4 mo.  Cancer went into remission for a year, a very wonderful year.  Cancer re-emerged in my esophagus Jan. 2010, but not in my liver.  Doctor decided to go ahead with the esophagectomy March 2010. Had a good recovery and was cruising along until Jan. of this year. Started to have acid reflux at night.  Took pills, seemed to help, but then started to have stomach gas at night.  It became so painful I couldn't sleep.  Tried all kinds of remedies, no relief.  It all of a sudden stopped a week ago.  I now am sleeping well.  I guess it's one of the many side-effects of our fate, enjoy the good days and brace for the bad.  Thanks for this site.  Sid

RE: Life after an Esophagectomy

by NewNormal on Mon Apr 11, 2011 06:07 PM

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My husband was dx'ed 12/14/06 with T3N1M1b Stage IV.  He did chemo, radiation, surgery (IvorLewis) and more chemo post-surgery.

Nightly he eats a bowl of popcorn to give his 'belly' something to do while he sleeps.  Sometimes will eat an apple too.  All about an hour before bed.

If he eats spicey he ends up aspirating in the night.  Those episodes take a few hours to clear from. 

He take 40mg of Nexium in the AM and 40mg in the PM.  Just before going to bed after all the popcorn and meds he takes a Gaviscon tablet (per doc's suggestion).  He has found it helpful to keep the 'stuff' down while he sleeps.

Hope all continue to do well and praying for those still in the fight.

 

RE: Life after an Esophagectomy

by Brian58 on Tue Apr 12, 2011 07:11 AM

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On Apr 11, 2011 6:07 PM NewNormal wrote:

My husband was dx'ed 12/14/06 with T3N1M1b Stage IV.  He did chemo, radiation, surgery (IvorLewis) and more chemo post-surgery.

Nightly he eats a bowl of popcorn to give his 'belly' something to do while he sleeps.  Sometimes will eat an apple too.  All about an hour before bed.

If he eats spicey he ends up aspirating in the night.  Those episodes take a few hours to clear from. 

He take 40mg of Nexium in the AM and 40mg in the PM.  Just before going to bed after all the popcorn and meds he takes a Gaviscon tablet (per doc's suggestion).  He has found it helpful to keep the 'stuff' down while he sleeps.

Hope all continue to do well and praying for those still in the fight.

 

NewNormal's account of how her husband handels the preparation for sleeping is amazingly close to mine.  When I suspect there will be risk of aspiration, I have a bowl of popcorn and no problems at all.  I don't know if it absorbs acid, creates some sort of temporary barrier, or what?  I just know that it has worked for me for over two years.

-Brian

RE: Life after an Esophagectomy

by maravij on Wed Oct 17, 2012 07:12 PM

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Hi everyone im 41 female im still in a delima if i will go ahead and have my total esophagectomy. i have 2 kids . jan i was diagnose stage 3 and had my chemo and radiation and went away after 2 months they see another new growth and my doctors wants a total esophagectomy.Im comfuse of the quality of life after surgery is it all worth it the pain and sufferings? they said if i dnt go surgery i may have 3 to 5 years expectancy( are they GOD to give me sentence ;( ) anyway i need all the help and advise i would like to built good memories with my family and not memories to be cared for by my family....i hope someone out there can enlighted me to make the right decision....Hugs to everyone you needs it right now....May God be with us all...

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