Looking for others' experiences with Esophageal Cancer treatments

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.

I agree with you, the surgery is invasive, my husband had the Ivor Lewis surgery plus chemo b4 which was brilliant in shrinking his tumour…he’s feeling ok “ish” still quite tired 6 months on, but it’s the weight loss isn’t it…so hard to gain…hes lost around 30 lbs so far 🙁 still losing

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.

Have you lost weight ? And did you have the Ivor Lewis surgery ? Thanks 🙂

I am sorry your husband is going thru so much. Sounds like he needs to be seen by a nutriologist that can reccomend foods that will sit better with him. His gastroenterologist should also be able to help. Hope he gets better soon.

Thankyou…hes seeing a dietitian and his gp but doesn’t talk to his surgeon for another month…lost 2kgs over the last 2 weeks. We’ve been careful with his diet…if he eats too much…dumping…weight loss…if he eats less…weight loss…having trouble drinking enough water..they recommend 6-8 glasses a day which he can’t come close to…it’s a daily battle to get enuff calories in despite all the cheese, peanut butter, butter and proteins..

High calorie boost probably contains milk ? Hes lactose intolerant and not sure if it’s available in nz 🤔