Post-Sx symptoms

ParkCity77

My fiancé is 40 years old and was diagnosed with an adenocarcinoma 1 year ago this July. Today he is 3 wks out post sx MIE. He is having a weird gurgling sound and a lot of pain still. The soft food diet is a challenge, it's hard to know how much to eat and how often to eat it, without causing a lot of pain. Lots of new things to learn... He has in a JTube feeding tube that he uses at night.
Any suggestions on what worked for you and when would be appreciated.

Has anyone experienced the gurgling?
And did it go away?
How long before you felt better?

The doctors are recommending chemo post-sx now. They got all the mass out of the esophagus, did the MIE, got clean margins, but 5 lymph nodes came up positive in the biopsy. So they are recc'd chemo now. However, it seems after our research, the jury is still out on whether it's really beneficial or not. And everyone says chemo after surgery is even worse. I cant imagine him going through chemo right now.

So what's the verdict in regards to post-sx chemo? And what about chemo/ radiation? Or nothing after surgery except heal and be cancer free.?

Alaska_Kim

Gurgling
My husband (56) is almost 9 wks. post MIE. I have noticed a lot of gurgling also, but no pain from eating, just surgery pains that lasted a few weeks. Mostly manageable without pain meds. Physically, he is healing very well and has been exercising 2 times a week through a oncology program for 3 weeks. He has had a lot of problems with food getting "stuck" and excess sticky saliva that causes a lot of vomitting. Two dilations and a 3rd probably this Thursday. Until he had the stricture, he was doing pretty good except he would not stop eating the moment he felt "full". His brain kept telling him he needed to eat more breakfast, lunch and dinner and not spread it out through the day. We were just getting the hang of things when the new problem started.

You didnt mention whether your fiancé had pre-op chemo, but I am guessing from the timing that he did. My husband did not have chemo before surgery because he was staged 1b after all the testing. However, he also had 5 removed lymph nodes test positive and is in his 2nd of 4 rounds of chemo. We looked at the odds if no chemo was done and although there are no guarantees, decided that any opportunity to reduce the chance of recurrence was out there, we would take it. He is also tolerating the chemo with a few side effects, but not nearly what we were bracing for.

He will start feeling better, but it does take time. Ggod luck.

Joel C

Alaska_Kim said:

Gurgling
My husband (56) is almost 9 wks. post MIE. I have noticed a lot of gurgling also, but no pain from eating, just surgery pains that lasted a few weeks. Mostly manageable without pain meds. Physically, he is healing very well and has been exercising 2 times a week through a oncology program for 3 weeks. He has had a lot of problems with food getting "stuck" and excess sticky saliva that causes a lot of vomitting. Two dilations and a 3rd probably this Thursday. Until he had the stricture, he was doing pretty good except he would not stop eating the moment he felt "full". His brain kept telling him he needed to eat more breakfast, lunch and dinner and not spread it out through the day. We were just getting the hang of things when the new problem started.

You didnt mention whether your fiancé had pre-op chemo, but I am guessing from the timing that he did. My husband did not have chemo before surgery because he was staged 1b after all the testing. However, he also had 5 removed lymph nodes test positive and is in his 2nd of 4 rounds of chemo. We looked at the odds if no chemo was done and although there are no guarantees, decided that any opportunity to reduce the chance of recurrence was out there, we would take it. He is also tolerating the chemo with a few side effects, but not nearly what we were bracing for.

He will start feeling better, but it does take time. Ggod luck.

Sounds familiar
Hello,
I had my MIE on 11/18/10 for stage 2B EC (49 years old). I was also diagnosed last July (what a month) I also had that post-surgery gurgling you are asking about. Mine happened during the night when I was in bed trying to sleep (head of bed raised 6”). I found taking a tiny sip of water and sitting up for a minute or two helped. I’m now seven months out from surgery and almost never get the gurgling. In regard to when you start to feel better, for me it was when I had my j-tube removed at five weeks out. At that point I started taking long walks with our dog everyday in the woods around our house. I really had to push myself but the harder I pushed the better I felt. By mid January I was walking 3 or 4 miles twice a day in the NH winter woods. I was really feeling good by then. Of course I was not dealing with post surgery chemo. I had chemo and radiation pre-surgery and again was walking long distances every day to get ready for the surgery.

You mentioned that your fiancé had five lymph nodes test positive at pathology. I’m curious to know if he had chemo and radiation pre-surgery and if he did what was the regiment?

If your fiancé would like to talk about what to expect going forward, please send me a PM and we can set something up.

Good luck,
Joel

Unknown

This comment has been removed by the Moderator

ParkCity77

Alaska_Kim said:

Gurgling
My husband (56) is almost 9 wks. post MIE. I have noticed a lot of gurgling also, but no pain from eating, just surgery pains that lasted a few weeks. Mostly manageable without pain meds. Physically, he is healing very well and has been exercising 2 times a week through a oncology program for 3 weeks. He has had a lot of problems with food getting "stuck" and excess sticky saliva that causes a lot of vomitting. Two dilations and a 3rd probably this Thursday. Until he had the stricture, he was doing pretty good except he would not stop eating the moment he felt "full". His brain kept telling him he needed to eat more breakfast, lunch and dinner and not spread it out through the day. We were just getting the hang of things when the new problem started.

You didnt mention whether your fiancé had pre-op chemo, but I am guessing from the timing that he did. My husband did not have chemo before surgery because he was staged 1b after all the testing. However, he also had 5 removed lymph nodes test positive and is in his 2nd of 4 rounds of chemo. We looked at the odds if no chemo was done and although there are no guarantees, decided that any opportunity to reduce the chance of recurrence was out there, we would take it. He is also tolerating the chemo with a few side effects, but not nearly what we were bracing for.

He will start feeling better, but it does take time. Ggod luck.

Thank you for taking the
Thank you for taking the time to write me of your husbands experience. It was very helpful.
My fiance did have a small round of chemo/ radiation before surgery. It hit him extremely hard and almost killed him. He's hesitant to go through it again, but I think in the end he will for similar reasons. He needs to start feeling better from the surgery and then things will be more clear.
Peace and LOve

ParkCity77

Joel C said:

Sounds familiar
Hello,
I had my MIE on 11/18/10 for stage 2B EC (49 years old). I was also diagnosed last July (what a month) I also had that post-surgery gurgling you are asking about. Mine happened during the night when I was in bed trying to sleep (head of bed raised 6”). I found taking a tiny sip of water and sitting up for a minute or two helped. I’m now seven months out from surgery and almost never get the gurgling. In regard to when you start to feel better, for me it was when I had my j-tube removed at five weeks out. At that point I started taking long walks with our dog everyday in the woods around our house. I really had to push myself but the harder I pushed the better I felt. By mid January I was walking 3 or 4 miles twice a day in the NH winter woods. I was really feeling good by then. Of course I was not dealing with post surgery chemo. I had chemo and radiation pre-surgery and again was walking long distances every day to get ready for the surgery.

You mentioned that your fiancé had five lymph nodes test positive at pathology. I’m curious to know if he had chemo and radiation pre-surgery and if he did what was the regiment?

If your fiancé would like to talk about what to expect going forward, please send me a PM and we can set something up.

Good luck,
Joel

Joel, that was all very
Joel, that was all very helpful info, thank you.
My fiance did do a small round of chemo/ rad before surgery. He was in a clinical study where they used 2 regular chemo drugs and added another called Cisplaxin (i think is the one). The drug seemed effective except for the almost killing him part. It/ or it and the radiation shrunk the tumor enough that he could swallow food again and get by until the time of his surgery. His tumor was the biggest Dr. Luketich had seen in some time. They are recc'd chemo post-sx now due to the 5LN's that came back positive in the biopsy bucket. All the LN's that were left in him that were tested came back neg. He will prolly do it, its just hard to imagine right now.
Thanks again for sharing your experience.
Meg

ParkCity77

Joel C said:

Sounds familiar
Hello,
I had my MIE on 11/18/10 for stage 2B EC (49 years old). I was also diagnosed last July (what a month) I also had that post-surgery gurgling you are asking about. Mine happened during the night when I was in bed trying to sleep (head of bed raised 6”). I found taking a tiny sip of water and sitting up for a minute or two helped. I’m now seven months out from surgery and almost never get the gurgling. In regard to when you start to feel better, for me it was when I had my j-tube removed at five weeks out. At that point I started taking long walks with our dog everyday in the woods around our house. I really had to push myself but the harder I pushed the better I felt. By mid January I was walking 3 or 4 miles twice a day in the NH winter woods. I was really feeling good by then. Of course I was not dealing with post surgery chemo. I had chemo and radiation pre-surgery and again was walking long distances every day to get ready for the surgery.

You mentioned that your fiancé had five lymph nodes test positive at pathology. I’m curious to know if he had chemo and radiation pre-surgery and if he did what was the regiment?

If your fiancé would like to talk about what to expect going forward, please send me a PM and we can set something up.

Good luck,
Joel

I was wondering if I could
I was wondering if I could take you up on your offer to have my fiancé chat with you if he had some questions? I however don't know how to do the PM thing you were referring to... So whenever you get the chance maybe you could PM me and give me your #, that way Jude (my fiancé) could call you. I think it would be nice for him to talk to someone who's actually gone through it. The doctors only know so much... And I'm not sure how much that is sometimes ;;) ok bye
Meg

ParkCity77

Joel C said:

Sounds familiar
Hello,
I had my MIE on 11/18/10 for stage 2B EC (49 years old). I was also diagnosed last July (what a month) I also had that post-surgery gurgling you are asking about. Mine happened during the night when I was in bed trying to sleep (head of bed raised 6”). I found taking a tiny sip of water and sitting up for a minute or two helped. I’m now seven months out from surgery and almost never get the gurgling. In regard to when you start to feel better, for me it was when I had my j-tube removed at five weeks out. At that point I started taking long walks with our dog everyday in the woods around our house. I really had to push myself but the harder I pushed the better I felt. By mid January I was walking 3 or 4 miles twice a day in the NH winter woods. I was really feeling good by then. Of course I was not dealing with post surgery chemo. I had chemo and radiation pre-surgery and again was walking long distances every day to get ready for the surgery.

You mentioned that your fiancé had five lymph nodes test positive at pathology. I’m curious to know if he had chemo and radiation pre-surgery and if he did what was the regiment?

If your fiancé would like to talk about what to expect going forward, please send me a PM and we can set something up.

Good luck,
Joel

Joel
I was wondering if I could take you up on your offer to have my fiancé chat with you if he had some questions? I however don't know how to do the PM thing you were referring to... So whenever you get the chance maybe you could PM me and give me your #, that way Jude (my fiancé) could call you. I think it would be nice for him to talk to someone who's actually gone through it. The doctors only know so much... And I'm not sure how much that is sometimes ;;) ok bye
Meg

Unknown

ParkCity77 said:

Joel
I was wondering if I could take you up on your offer to have my fiancé chat with you if he had some questions? I however don't know how to do the PM thing you were referring to... So whenever you get the chance maybe you could PM me and give me your #, that way Jude (my fiancé) could call you. I think it would be nice for him to talk to someone who's actually gone through it. The doctors only know so much... And I'm not sure how much that is sometimes ;;) ok bye
Meg

This comment has been removed by the Moderator

preacherchad

Hi;
I was diagnosed November
Hi;

I was diagnosed November 11, 2010. I was 40 then. I had Ivor Lewis March 24, 2011. I did have chemo/radiation pre surgery. I have had the gurgling sound also, which is kinda of scary when this is all new. Sipping water and sitting up right for 10 minutes did help me before bed time, little movement just sitting on the edge of the bed before laying down. The soft food diet did not sit well with me, i stayed sick until i had the j-tube removed then started feeling better and eating better.
I am currently going through post surgery chemo, 3 nodes tested positive. I am doing great with post surgery chemo right now, only had one treatment so far. I was sick only 1 afternoon, and that is probabally due to over eating on accident. I know there is little medical proof that post surgery chemo is beneficial, but they did recommend it to me. My thoughts were, i have come this far, i would hate to know i did not do everything i could to prevent it from coming back.

Your body has a lot of unusual pains, and feelings after surgery, and no one knows those feelings except the ones that have been through it I guess. If your fiance would like to talk, I would be happy to share my experiences with him and hopefully give him some peace about what he is going through.

chad

Unknown

preacherchad said:

Hi;
I was diagnosed November
Hi;

I was diagnosed November 11, 2010. I was 40 then. I had Ivor Lewis March 24, 2011. I did have chemo/radiation pre surgery. I have had the gurgling sound also, which is kinda of scary when this is all new. Sipping water and sitting up right for 10 minutes did help me before bed time, little movement just sitting on the edge of the bed before laying down. The soft food diet did not sit well with me, i stayed sick until i had the j-tube removed then started feeling better and eating better.
I am currently going through post surgery chemo, 3 nodes tested positive. I am doing great with post surgery chemo right now, only had one treatment so far. I was sick only 1 afternoon, and that is probabally due to over eating on accident. I know there is little medical proof that post surgery chemo is beneficial, but they did recommend it to me. My thoughts were, i have come this far, i would hate to know i did not do everything i could to prevent it from coming back.

Your body has a lot of unusual pains, and feelings after surgery, and no one knows those feelings except the ones that have been through it I guess. If your fiance would like to talk, I would be happy to share my experiences with him and hopefully give him some peace about what he is going through.

chad

This comment has been removed by the Moderator

ParkCity77

preacherchad said:

Hi;
I was diagnosed November
Hi;

I was diagnosed November 11, 2010. I was 40 then. I had Ivor Lewis March 24, 2011. I did have chemo/radiation pre surgery. I have had the gurgling sound also, which is kinda of scary when this is all new. Sipping water and sitting up right for 10 minutes did help me before bed time, little movement just sitting on the edge of the bed before laying down. The soft food diet did not sit well with me, i stayed sick until i had the j-tube removed then started feeling better and eating better.
I am currently going through post surgery chemo, 3 nodes tested positive. I am doing great with post surgery chemo right now, only had one treatment so far. I was sick only 1 afternoon, and that is probabally due to over eating on accident. I know there is little medical proof that post surgery chemo is beneficial, but they did recommend it to me. My thoughts were, i have come this far, i would hate to know i did not do everything i could to prevent it from coming back.

Your body has a lot of unusual pains, and feelings after surgery, and no one knows those feelings except the ones that have been through it I guess. If your fiance would like to talk, I would be happy to share my experiences with him and hopefully give him some peace about what he is going through.

chad

Chad I am glad to hear you
Chad I am glad to hear you are tolerating things. I will keep you in my prayers that things continue to go well. Keep the Faith! You know your body best and if that Jtube was not working for you, I say congrats on ditchin it! Here's to the last stretch! Thanks for the tips every bit helps.
Meg

Gatoraid

Chemo after surgery
I had 2 rounds of chemo and 28 days of radiation prior to my surgery. Besides the tumor, they had found 2 lymph nodes positive before the surgery and after taking out 16 nodes at surgery, they found the 2 that tested positive. My recommendation would be to go for the post op chemo. You really can't take a chance that any cells that can spread the disease are still in your body. As for the gurgling, I had it too but it for the most part has gone away (surgery was 6 months ago). My pain was on my right side where they had separated my ribs to get access to the esophagus. I learned that if I bloat myself with too much liquid and food, the pain would come. Once I figured that out, I ate and drank a little less. It's a learning process. I learned to love mashed potatoes and gravy along with allot of creamed soups. After 6 weeks I was eating everything, although I still have issues with upset stomach and light headedness. tell your fiance to hang in there because it does get better.