Looking for others' experiences with Esophageal Cancer treatments

I had surgery 3 weeks ago and am in the process of weaning off the feeding tube to regular foods. Fortunately my appetite is back so 2000 calories is a cakewalk. My body seems to be adjusting to my new plumbing. Frankly, while eating I can't tell I've even had the surgery, except for the quantity. I am trying to figure out signals from my body that tells me I am full. There is some bubbly regurgitation that starts in my throat when I am getting near full. I am beginning to error on the side of stopping early, I can always come back and eat more. However, my bowels have been bouncing around trying to get back to normal from kind of ok to diarrhea, but lots of gas. I think I'll get there. I take one ounce of MiraLAX every day just to keep things smooth and it seems to work well. As far as the vagus nerve being removed, yes, that's part of the surgery. I do take 40 mg of Pantoprazole daily for acid but the only thing left to keep acid down is gravity. There is not flap at the top of the new esophagus to keep acid out of the throat. He has to sleep on a 30 degree angle, wedge pillow or adjustable bed for life, and be very careful bending over to pick up stuff. I don't know what's causing the nausea. Are you being treated at a major cancer hospital?

Hi Morrow. I’m 71. I was diagnosed April 2023. I had 25 rad and 7 chemo. I am now waiting for biopsy on liver due to ct showing small spots on liver. I had biopsy April on liver and biopsy didn’t show cancer; but inflammation. I’m not a candidate for surgery due nodes and possible liver cancer. My oncologist at UAB said he will start chemo and immunotherapy after my biopsy. I did great with first chemo and rad. I am walking everyday and play pickle ball once or twice a week. Prayers for your husband.

Hubby’s first couple of weeks weren’t too bad either and he also experienced foamy regurgitation as well as diarrhea (which subsided) but the other problems mentioned soon set in. Gastroparesis (caused by the vagus nerve being cut or damaged) can’t be cured, only treated, and does not necessarily start immediately; it can begin at any time, even weeks or months later, so you’re probably not out of the woods yet. He stays upright for the required time and does sleep with a wedge (once sleeping, however, he involuntarily turns to his side). Nausea and vomiting ultimately relate to the vagus nerve being cut or damaged.

Your positive attitude will serve you well as you deal with this cancer. One of the best resources I found and continue to be in touch with is a Patient Navigator. They are very experienced in their field & available w/o charge in many hospitals and cancer centers now days. I can get help with setting appointments for me with any of my doctors, get all questions answered, & much needed personal support etc. Her speciality is thoracic cancer patients. Cancers in this area include esophageal, lung, throat, back of tongue, breast, and brain. I've survived lung cancer twice and Stage 4 esophageal cancer recently. Post surgery I was in a coma for 2 months and my death certificate was prepared. Glad I had a strong medical advocate friend to tell the doctor not to sign the certificate as she knew I have an inner strength that has gotten me thru many serious health issues in my life. I'm 3 yrs out from the esophagectomy and I have issues I'll forever deal with. But I'm surviving and have accepted that it's up to me to find ways to deal with the new gastric problems. It's trial and error with food for me. A top oncologist is so important as well as a good gastro doctor. Always be sure to bring a list of your questions to your appts. and never be reluctant to question answers. The more you know about this disease, the better.
I wish you the best of luck with your surgery.

Amazing courage! Hope things go well for you.

My husband is three months post esophagectomy (cardia area; the surgery involved removing a portion of the esophagus and part of the stomach) and pyloroplasty (surgery that alters the muscular valve at the bottom of the stomach to make it easier for food to pass through to the duodenum). He currently has a j-tube and receives enteral feeding for 16-hours per day.

During the course of his surgery, the vagus nerve was “sacrificed.” That was immediately obvious when he was unable to tell whether or not he was hungry (or full). He’s had daily bouts of vomiting and/or dry heaves since the beginning. Initially we assumed that the vomit consisted of gastric juices but as it turns out, it is primarily bile that is refluxing into his stomach from the duodenum This is happening daily and too much bile reflux can cause gastritis (inflammation in the stomach). In the beginning he suffered from constant diarrhea but that gave way to what has become routine constipation. He’s weak, often has trouble keeping his head up. He, apparently like so many others, is going through hell.

He was released from the hospital the first time, in spite of the fact that he wasn’t eating very much at all and he was vomiting daily. Scans indicated that the barium liquid was moving properly through the esophagus, stomach and pylorus. Yet at home, the vomit always contained food—at times as late as 4-½ hours after consumption and in what appeared to be pristine condition. As days went by, with constant vomiting and lack of nourishment, he became dehydrated and had to visit the local emergency room for IV fluids. Another few days went by with no changes in his condition, which sent us back to the hospital where the surgery had first taken place. He was re-admitted and placed back on the tube feeding. He remained in the hospital for an additional three weeks with no improvement. When he was released the second time, he remained on enteral feeding at home; so at the very least he would be getting nourishment.

I have a tremendous amount of concern about the vagus nerve having been “sacrificed.” It is the main channel of communication between the brain and the digestive system, delivering messages about satiety and hunger, stimulating the involuntary downward muscle contractions through the esophagus, stomach and intestines (peristalsis), releasing bile from the gallbladder to help digest fats, assisting (and maybe regulating?) production of digestive juices to break down food, and possibly affecting constipation. There can also be a change in voice, difficulty swallowing, loss of the gag reflex, nausea, vomiting, abdominal pain or gastroparesis (which prevents the stomach from emptying properly), all of which, I suppose, depends upon where it is severed. I asked the doctor if the nerve would regenerate and he said, “no.” In order and hopefully to combat my husband’s lack of appetite, the doctor recommended either megestrol or THC gummies to give him the “munchies.” Since Megace (megestrol) has significant and scary possible side effects, gummies was our choice. Unfortunately, the gummies did not increase his appetite at all—and I wondered if this might also be caused by the vagus nerve. When I researched THC, munchies and the vagus nerve, I learned that there had been a very recent study on this exact topic and as one would expect, signals follow the regular neural pathways—in other words, the vagus nerve.

One of hubby’s barium scans revealed inflammation in both the stomach and esophagus. The technician indicated that it could be from vomiting—or vice versa, the inflammation could have caused the vomiting, but apparently, since the vomit consists primarily of bile, that would seem to not be the case. It would appear under those circumstances that the vomited bile is causing inflammation in both stomach and esophagus—and that could result in ulcers or worse.

So they say that the body has to adjust—take small bites and chew food well. My husband takes small bites but after the first or second bite, he vomits. His body is not adjusting, it is rejecting food. Even sips of water frequently stimulate the vomit reaction. On the other hand, once he has vomited and gotten all of that bile and/or gastric juice out of his belly, he is usually able to tolerate a glass of Boost, or a cup of broth. There has to be an explanation for this suffering and there must be some way to treat it. He is on several anti-nausea medications but none seem to work. There is a medication to help reduce bile reflux but I get the impression that it isn’t that great. Does anyone else out there have similar issues, especially if you’ve resolved them. Please let all of us know how you fight or fought it.

@lcasry, your esophageal cancer story sounds similar to the extperiences of @dsh33782. I hope the two of you have connected here. If not, consider this an introduction. 🙂

Morrow, have you started chemo and immunotherapy yet?

@lcasry
Hi I had 28 days of radiation and chemo for esphageak cancer tumor and now it is gone. But last 2 scans showed cancerous tumor growing on my left kidney. I see kidney surgeon in 10 days to hear what the plan is. I assume they will probably want to remove kidney to be sure margins are good. I feel good and am eating well after being on feeding tube for several months during esophageal cancer treatment which started after I could not swallow anything but sips of water. I was not a candidate for surgery for the esophageal cancer. What is your next step?

The surgery is invasive. I've lost close to 50 pounds since my diagnosis in November 22 of last year. 5 weeks of radiation and chemo shrank the tumor before it was removed in April this year. Subsequent PET in August revealed 3 new areas of cancer. Currently receiving chemo and immunotherapy to put it in remission. It's tough on my 73 year old body. But I am taking it one day at a time.