Life after an Esophagectomy

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RE: Life after an Esophagectomy

by Imchipman on Thu Jun 22, 2017 09:29 PM

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On Jun 22, 2017 7:40 PM Klazrine wrote:

Hi everybody,

I am new to this site but am finding it helpful. My father was diagnosed with stage 4 EC in January of this year. It took 4 months to even get treatment started (thank you wonderful insurance companies). My father did 6 weeks of radiation and chemo (booster dose). He had several lymph nodes bioposied which all came back negative for cancer and he only had an infection, was given antibotics. Radiation and chemo went ok until the end, then it became virtually impossible for him eat or drink anything. He has lost roughly 30 pounds since this began. He just had he post treatment scans and the radiation and chemo really only slowed the cancer down and killed a few small spots in his lungs. His lymph nodes are still 'lighting up' on the PET scan. His doctors have now said that he needs a full esophagectomy and they will remove those nodes and fully test them. If they are cancerous, he will have to have another round of chemo after he recovers. As of now the surgerry is scheduled for July and doctors have told him that if he does not do the surgery the cancer will back to full strength within 3 months. This has been the hardest year of our life, watching this diesease is gut wrenching. I am looking for any kind of advice or anyone with a similar story as my father tries to make the hardest decision in his life. Thank you 

I had to go through similar procedure 28 radiation treatments six chemotherapy treatments and I did shrink the cancer at the bottom of my esophagus a little,they said it was stage 3 cancer.After four weeks of trying to get my strength back November 21, 2016 I had my esophagectomy. It took about four months after the operation to get my strength back to go back to work !im 59 years old and doing pretty good considering all that I went through. The operations is tough but it's only way to get rid of the cancer.Good luck to you and your family.

RE: Life after an Esophagectomy

by Patti.Baird on Fri Jun 23, 2017 03:14 PM

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My husband had EC in 2010 - chemo, radiation and esophagectomy.   One year later, 4 tumors in his lungs and went through chemo again.   Now, 5 years later he is cancer free!  Doing well, golf, travels and enjoys life.  Does have some problems with reflux and aspiration but he is attentive to how much and when he eats.    Keep the faith, be positive and be strong.   Pray every day and God will surround you with his grace.  

RE: Life after an Esophagectomy

by Patti.Baird on Fri Jun 23, 2017 03:15 PM

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My husband had EC in 2010 - chemo, radiation and esophagectomy.   One year later, 4 tumors in his lungs and went through chemo again.   Now, 5 years later he is cancer free!  Doing well, golf, travels and enjoys life.  Does have some problems with reflux and aspiration but he is attentive to how much and when he eats.    Keep the faith, be positive and be strong.   Pray every day and God will surround you with his grace.  

RE: Life after an Esophagectomy

by Khunter3 on Fri Jul 28, 2017 02:53 AM

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I went through a similar process. 6 weeks of 24/7 chemo and 28 sessions of radiation. A month break and surgery (miminally invasive) scheduled for Jan 16. Woke up to find out that the surgery did not happen due to the proximity to the heart and aorta. Was possibility that the esophagectomy was not possible. A few tests and I was told it had to be done via thorocotemy. Back in a week later and had the surgery with stomach pull up. 12 days in the hospital and then home for the recovery. Overall I have done well and returned to work after 4 months but still have issues. As many have said I must sleep. Sitting up and the sleep number has made that possible. I have a regular problem of throwing up each morning and sometimes during the day but have adjusted to this issue. Doctor said give it a year and body may adjust but I am glad to be alive and enjoying new granddaughter. The fight is tough but worth it in the end. Best wishes to any who have been or will go through this. Regards

RE: Life after an Esophagectomy

by Khunter3 on Fri Jul 28, 2017 02:58 AM

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I went through a similar process. 6 weeks of 24/7 chemo and 28 sessions of radiation. A month break and surgery (miminally invasive) scheduled for Jan 16. Woke up to find out that the surgery did not happen due to the proximity to the heart and aorta. Was possibility that the esophagectomy was not possible. A few tests and I was told it had to be done via thorocotemy. Back in a week later and had the surgery with stomach pull up. 12 days in the hospital and then home for the recovery. Overall I have done well and returned to work after 4 months but still have issues. As many have said I must sleep. Sitting up and the sleep number has made that possible. I have a regular problem of throwing up each morning and sometimes during the day but have adjusted to this issue. Doctor said give it a year and body may adjust but I am glad to be alive and enjoying new granddaughter. The fight is tough but worth it in the end. Best wishes to any who have been or will go through this. Regards

RE: Life after an Esophagectomy

by AConcernedDad on Fri Jul 28, 2017 03:20 AM

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Sir, May Jehovah give you the strength and faith to continue in your fight. I pray for you and your loved ones to endure, Amen.

Boo Hargis

RE: Life after an Esophagectomy

by dowser4 on Fri Jul 28, 2017 03:40 AM

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You need to take a medication for acid reflux, dh had the same problem and the stomach acid will destory any repairs that you had done from throwing up food every day.

Dh went through surgery 1996 & 1999, and end up with a feeding tube in 2013 due to the weight loss, unable to swallow from this damage.

RE: Life after an Esophagectomy

by dowser4 on Fri Jul 28, 2017 05:57 PM

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On Nov 22, 2010 10:11 PM whitejaw wrote:

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.

Dh still has mucus problems still after 17 years from the first surgery.  He is using a product called MuGard, it is for esophagus patients.  We have also found using sparkling flavored water to swish in the mouth breaks up the mucus. Recently we started using Sunny D, keep a small amount in a cup and dh uses his sponges to coat his mouth with this and it breaks up the thick mucus so he can spit it out.   The other item is Bioteen spray he uses it to coat his mouth for moisture.  He can not swallow any food or liquid product due to peripheral neuropathy, all food and liquid is via a feeding tube.  

The mucus is a part of dehydration, the less water consumed the thicker the mucus becomes.  The esophagus lining believes there is a foreign body in the throat hence the mucus build up to rid the body of the irritant.

Certain spices in the patients diet can cause a flare up on the mucus also acid reflux. Some patients it can be gralic which is intolerable causes heart burn or acid reflux. 

RE: Life after an Esophagectomy

by dowser4 on Fri Jul 28, 2017 05:58 PM

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On Nov 22, 2010 10:11 PM whitejaw wrote:

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.

Dh still has mucus problems still after 17 years from the first surgery.  He is using a product called MuGard, it is for esophagus patients.  We have also found using sparkling flavored water to swish in the mouth breaks up the mucus. Recently we started using Sunny D, keep a small amount in a cup and dh uses his sponges to coat his mouth with this and it breaks up the thick mucus so he can spit it out.   The other item is Bioteen spray he uses it to coat his mouth for moisture.  He can not swallow any food or liquid product due to peripheral neuropathy, all food and liquid is via a feeding tube.  

The mucus is a part of dehydration, the less water consumed the thicker the mucus becomes.  The esophagus lining believes there is a foreign body in the throat hence the mucus build up to rid the body of the irritant.

Certain spices in the patients diet can cause a flare up on the mucus also acid reflux. Some patients it can be gralic which is intolerable causes heart burn or acid reflux. 

RE: Life after an Esophagectomy

by Mike2595 on Fri Mar 16, 2018 07:40 PM

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Hi Everybody, I had my esophagectomy 10 years ago when I was 67 years old. If you do the math that makes me 78 now. I didn't know this site existed until recently. If I did I think it would have helped me greatly so I am contributing my experience to maybe help somebody out there.

I didn't actually have cancer but I had Barrett's with high grade displasia. The next progression would have been cancer. Fortunately I have a wonderful doctor that sent me for an endoscope when I told her that I had frequent heartburn. The endo found Barrett's in an early stage. From then on I had an endoscope every year until the Barrett's changed to displasia. Then I had the scopes every 6 months until the high grade displasia showed up. At that point the doctors advised me to have it removed. So, on Sept 10, 2007 I had the surgery. Biopsy showed no cancer. My recovery was complicated with a very serious infection that nearly killed me. The infection started at my feeding tube so the tube was removed and I was fed by IV solution. There were further complications that resulted in 9 surgeries and 22 days in the University of Minnesota hospital. Some of it in ICU and very sick.

Upon release from the hospital I was so weak that I was barely able to walk and had the OK to eat whatever I wanted but I had no appetite. I would force myself to eat one poached egg or 1/2 of a canned peach. Gradually my ability to eat returned to the point that I now eat normal large meals. I do have some minor dificulty digesting. The food just doesn't move through my system very well. Through all this my wife has been an angel. Constantly hovering over me and providing every possible thing could want or need.

We did buy an adjustible Temperpedic split king size bed which is wonderful. I need to sleep propped up because of bile reflex. I get the bitter, burning bile up it the throat quite frequently. Sometimes it comes up when I am sleeping and I aspirate some of it. That will cause me to cough and vomit for 2 hours. The stuff burns terrible! This is not food that comes up, it is bile,totally different from food vomit.

Other than the bile and needing to stay verticle my life is fairly normal. I bring a bed wedge when I travel. The airlines check it as medical equipment at no charge. I never recovered all my strength and I am short of breath with exertion. I have no stamina.I cook and eat normal food and lots of it. My weight is stable at 200# at 6   feet tall.

I do get occasional "dumping syndrom". With me it is 2-3 hours after eating. It presents with confusion to the point that I don't know where I am and profuse sweating. I sometimes remove my shirt soaked with sweat. It passes quickly in a few minutes. I have found that I crave apples when the dumping comes on and they seem to help me. I eat an apple every night before bed and they seem to help with the bile reflux.

If I can help any of you with your recovery please feel free to ask. This was a very long term and difficult recovery. I'll never be the same but at least I am still alive and hope to enjoy a normal life span.

Good Luck to You All, Al

 

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