Esophagectomy recovery, slow. Desperate for relief

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Esophagectomy recovery, slow. Desperate for relief

by Lynettes on Sat Oct 17, 2015 07:15 PM

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My boyfriend is 2 months post op and is suffering badly. He was diagnosed in April 2015 T3N1. He did 5 rounds of chemo and daily radiation for 5 weeks. His esophagectomy was the end of August. His first couple of day out of the hospital he felt great. Then the pain set in.. They had him on norco and switched him to dilaudid. Which helped. Now that the pain has subsided he has all these other side effects that do not seem to be improving. A thick clear mucus that he coughs and gags on every time he tries to eat. Nausea that doesn't subside. He will have one decent day then suffer for 3 days after so he's afraid to eat anything. Then there is the weight loss. He was small to begin with and now it's scary to see. The dr. Keeps saying that everything looks good from the surgery (except there were active cancer cells found in the tumor and lymph nodes they removed) and to do what he can tolerate for everything. Eating, exercise etc. but he can't do anything. We feel so lost and afraid that there is something going on that should be addressed. I guess I'm looking for some help understanding. Is the healing process really this slow? He was a healthy 38 year old man. Now he can not walk to the end of the block or tolerate any nutrients. I feel like there is nothing I can do to help him.

RE: Esophagectomy recovery, slow. Desperate for relief

by Aoife on Sun Oct 18, 2015 08:43 AM

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I was 32 when I was in a similar position to your boyfriend, I was stage 3 and had the chemo then surgery but I did have a total response to the surgery.  I amd ober 8.5 years since surgery at this stage and am a 9 year survivor and mother of a 4 and 5 year old born post surgery. 

At only 2 months out I was not up to anything much, I was in severe agony, I had a bad cough, found it hard eating but it did get easier with time.  The first 6 months post surgery were worse than the remaining time since the surgery. I could not drink milk at the time until I became pregnant with my 4 year old.  I can now eat 3 small courses of food.  I do not have the energy of someone my age but I do work but staying out until 4am in the morning is out but I am still here.  It does get easier with time, Aoife

RE: Esophagectomy recovery, slow. Desperate for relief

by steveb50 on Sun Oct 18, 2015 12:49 PM

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On Oct 17, 2015 7:15 PM Lynettes wrote:

My boyfriend is 2 months post op and is suffering badly. He was diagnosed in April 2015 T3N1. He did 5 rounds of chemo and daily radiation for 5 weeks. His esophagectomy was the end of August. His first couple of day out of the hospital he felt great. Then the pain set in.. They had him on norco and switched him to dilaudid. Which helped. Now that the pain has subsided he has all these other side effects that do not seem to be improving. A thick clear mucus that he coughs and gags on every time he tries to eat. Nausea that doesn't subside. He will have one decent day then suffer for 3 days after so he's afraid to eat anything. Then there is the weight loss. He was small to begin with and now it's scary to see. The dr. Keeps saying that everything looks good from the surgery (except there were active cancer cells found in the tumor and lymph nodes they removed) and to do what he can tolerate for everything. Eating, exercise etc. but he can't do anything. We feel so lost and afraid that there is something going on that should be addressed. I guess I'm looking for some help understanding. Is the healing process really this slow? He was a healthy 38 year old man. Now he can not walk to the end of the block or tolerate any nutrients. I feel like there is nothing I can do to help him.

Hi Lynettes,

How much is your boyfriend trying to eat at one time? My husband could only  about a 1/3 of a cup of food every few hours and drinking fluids an hour before the next small meal. If he over ate or drank water on top of food he would get dry heaves or expel a lot of mucus.  He has to keep walking even if it is only down the driveway and back. Have you called the oncologist? The surgeon's job is done although our surgeon's office has some very good PA's who are better with the after effects.

So the active cells were found after chemo and radiation? It sounds like he needs to see the oncologist. It might help if he avoids dairy for a while. You might look back to others posting about constant nausea to see if someone suggested something that worked. I have read others who have struggled with that symptom. Wishing you better days ahead!

Tracy B.

RE: Esophagectomy recovery, slow. Desperate for relief

by Chuckso145 on Sun Oct 18, 2015 01:27 PM

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Hi, Im 39 and I was also dx'd T3N1 EC in May 2015. I did 9 weeks of chemo, and had 5.5 weeks of radiation concurrently at the back end. I had surgery , Ivor Lewis esoohagectomy at Sloan Kettering on Sept 28.I was in the hospital for 7 and a half days, and was released on Oct 6th. Eating for the first week was bad. I threw everything up, and was losing a lot of weight. Every person is different, and eating is a chore. After throwing up all the time , I disregarded the nutritionist advice and just tried many things to see if they worked. I can not eat every 3 hours, the food is still in my stomach from the last meal ,and I throw up. I can not drink at all while eating, or for 20 minutes after a meal , or I will throw up. I found I can actually eat more if I don't have liquids during a meal. I don't care about healthy eating right now, I want as many calories as possible,high fat high protein. Can't lose any more weight. Here is my typical daily meal plan now. I also take protonix in the am for reflux If I eat one bite too much or drink while eating, it all comes up. PM me if you have any other questions or need to chat. One cup of coffee upon waking. Breakfast : one sunny side up egg,on two pcs of very buttery rye toast. I can eat the entire egg sandwich quickly and easily. NO LIQUID I DRINK GATORADE IN BETWEEN MEALS. Lunch: peanut butter and jelly on rye( full sandwich) No Liquids Gatorade in between meals Dinner: no later than 7:30 pm. I eat anything I can, just no liquids. Bedtime around 11:30

RE: Esophagectomy recovery, slow. Desperate for relief

by Lynettes on Sun Oct 18, 2015 01:40 PM

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Thank you Tracy for the reply. Yes he sees the oncologist this week. They will be doing labs and checking his level. Next month he will have a PET scan to determine if the cancer has spread. Prayers we find nothing. Yesterday was a very hard day. But so far this morning he's doing much better. Had a light breakfast and has kept it done. We will also see the nutritionist this week, so hopefully we can get some more help from her.

RE: Esophagectomy recovery, slow. Desperate for relief

by Lynettes on Sun Oct 18, 2015 01:44 PM

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Thank you for the information. You are right with the liquids. He drinks a lot of water. I feel too much, but the first couple weeks home he had such bad sweats and was always thirsty so drank a lot. He has slowed down on that a bit since the sweats have subsided. I'm going to try not having him drink with meals only between and see how that goes. Thank you so much for taking the time to help.

RE: Esophagectomy recovery, slow. Desperate for relief

by Lynettes on Sun Oct 18, 2015 01:47 PM

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Thank you so much for the reply. It helps to know its a one day at a time recovery and we need to keep pushing forward. He did so well through chemo and radiation. We thought this surgery would be a piece of cake and we would move on. But it seems his battle is far from over. Thank you again for taking the time to comfort my worrisome heart.

RE: Esophagectomy recovery, slow. Desperate for relief

by lulumarie on Sun Oct 18, 2015 05:05 PM

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I will put him on my prayer list. This is a very difficult sickness and each case is different.  My husband had a liver transplant 10 years before his cancer and that compromised his immune system.  Tell him to eat whatever he can keep down.  Small bites here and there can help - forget about nutrition - eat whatever stays down - McDonald's milk shakes are 750 calories - drink as much as possible. Enjoy your lives in whatever way you can and try to relax and think about other things.  God is watching over you both.  God bless you.

RE: Esophagectomy recovery, slow. Desperate for relief

by joensteph on Tue Oct 20, 2015 04:03 PM

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The recovery is tough.  My husbands surgeon said it takes a full year to feel back to normal.  My husband is almost to the six month mark and doing great but he did have alot of pain, ALOT of nausea and difficulties eating in the beginning but over time everything begins to settle down. Emend and dissolvable Zofran are both good for nausea.  My husband even had to go as far as to use anti nausea suppositories to eleviate the nausea.  Its important to stay hydrated.  My husband has found drinking a full glass of water prior to his meals takes away the side pain he experienced when eating in the beginning. (He had robotic minimally invasive surgery). Hang in there it does get easier I promise!!!

RE: Esophagectomy recovery, slow. Desperate for relief

by periwinkleB on Wed Oct 21, 2015 06:07 PM

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I cannot suggest that you use cannabis but i can tell you that for about a month and it has allowed my boyfreind to have a life again! he is 2 months post minimally invasisve espophagectomy and prior to the cannabis, he suffered terribly. he actually said to me "i dont want to do this anymore" after fighting through chemo and radiation he was ready to give up because of the un ending nausea and pain. He is fortunate enough to have lots of time off to heal and recover, he still suffers if he eats too much, too much sugar, milk, caffiene or doesnt eat at regular intervals. he still feels the pain and nausea BUT he is living again, up, moving, gaining weight slowly, his color is back and he smiles..alot. anything is worth that!

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