Esophageal cancer treatment: Anyone have good experiences to share?

Vicki
Great to hear from long term EC survivor. I had chemo and radiation several years ago for EC and am still alive and kicking. At 79 I hope I still have another 10-15 years to enjoy with my wife Charlotte.
Don

Stay away from online support groups?! Really?! I'm only a 5 yr survivor... but the single biggest thing I do, on our twice-weekly Zoom calls, is help my fellow EC patients. Support group? I suppose... but I don't think of us that way. We have a variety of patient counselors... and we've done every treatment known to man, had every type of surgery, have done every immunotherapy. We have stage 1s thru stage 4s... patients from all over the world come visit us... and stick with us. Our doctors only have so much time with us patients... but we patients have all the time in the world to help others.

I finished my 5th round of chemo this week and finish radiation next week. I meet with the surgeon next week. Does anyone have any specific questions I should ask the surgeon? I have to admit I am very anxious about this surgery. Please share anything I should ask, confirm, prepare myself for.

Well said. I am also a 5 year survivor. I have experienced many of the same issues mentioned (and a few not mentioned) on this site by fellow EC patients. I am not a doctor and don’t consider myself a support person but rather someone that anyone can lean on at anytime to discuss whatever is on their mind. EC can be intimidating, especially when first diagnosed. The feeling of satisfaction one gets from being able to help others is beyond words. I feel these type of groups (whether considered support or not, that is just a word) can help play a major role in someone’s journey in dealing with EC. It has helped me for sure.

I’m really thankful for all of you. 🙏🏻🩷

December 2022, my husband (80 years old) had surgery removing about 6 inches of his esophagus and top part on his stomach. It was a very long recovery; he used a feeding tube for almost a year and half. He had dilatation a few times to aid with his swallowing. It was a great disappointment; we thought that a six months recovery would be in order.
Because he was losing weight, I started him drinking Chocolate Mighty Shakes with 2-3 Tbs heavy cream added. Three (4oz) shakes a day provided more than 1000 calories a day. Still his weight did not improve by a lot. He had lots of problems with swallowing, mucus, lack of appetite, food texture and lack of taste were all issues. He felt rather sad.
By Spring 2024, we realized that at least 75% of his problems came with the tube feeding. Even if his weight was below our goal, we decided to cut tube feeding during the day, getting him freedom to move around, go outside etc. This really worked in giving him a new and much happier outlook. He was always a very active person. Soon, he was willing to try eating some food without my coaxing. By Summer, he no longer needed his tube feeding, from then on, his recovery went steadily better, from eating ½ cup of food at the time to one cup in about a month; in addition, he was still drinking his shakes to add to his calorie’s intake. Now, his diet is almost normal, his weigh stable, and most of all, he is a lot happier, he is doing projects again although his stamina is still a little low but betting better. For a while, we felt we would never this day, we are very thankful.

Did he have GE juncture cancer? What stage was it!? My husband just completed 4 rounds of FLOT and is scheduled for same surgery 12/31. Then he requires 4 more rounds of chemo.
I am so happy that your husband is doing much better

This reminds me so much of what my husband has gone through. He started in June 2023 with stage 1 cancer of the cardia—no chemo or radiation but removal of 10-15% of the esophagus and ¼ of the stomach. Cancer was confined and no lymph nodes were involved.

His journey with the j-tube lasted a year and it was replete with problems—not tolerating various brands of enteral formula, tube falling out, getting clogged, leaking bile around the outside of the tube and excoriating his skin.

About one-year post surgery, the j-tube was removed and he was put on TPN (IV nutrition), which also has its own issues: he was hospitalized three times with gallbladder problems, which are common because of the body’s failure to use its digestive system; he had three ERCP procedures to remove sludge and stones from the gallbladder; and, finally, a bloodstream bacterial and fungal infection.

And, so, after six months, he was taken off TPN and had another j-tube placed. That’s where he’s at today—released from the hospital the day before yesterday and on enteral feeding 24-hours per day, at a very reduced delivery rate. It has been my intention to reduce the enteral feeding while increasing real food, Nausea and vomiting have been an issue with him right from the start so eating will have to be attempted while he is not hooked up to the formula and I want to follow what you’ve done. I hope that this will work and wish you good luck with what you’re doing.

I just noticed the initial posting asking for any good news. I was diagnosed with advanced stage 3 esophageal junction Cancer in early January of 2023. I was age 84 at the time. I underwent only 3 Chemo treatments due to a severe drop in platelet count. I continued my radiation therapy 5 days a week for 6 weeks, along with 2 hours of Hydrogen inhalation daily at my home. I initially had a feeding tube that was inserted through my nose and into my duodenum. Which I kept in use the entire duration, despite their wanting to surgically implant the other type through my skin and into my stomach. I decided that if I could not beat the cancer, I could live out my time with the tube in my nose. If cured, it can easily be removed. I am happy to say that in September of 2023 the tumor had shrunk so much that I was able to swallow very small bites again. I personally pulled the almost 6 ft. feeding tube out of my body. I continued my daily 2 hour Hydrogen inhalation treatments, and still do to this day, and the tumor kept continually shrinking. I am now 86 years old, Can swallow like a 20 year old, and have been cancer free since October of 2023. My hair and beard have grown back, and I have regained 40 of the 68 pounds I lost during tube feeding. I will continue my daily Hydrogen inhalation through my cannula, probably for the rest of my life. I know it played a HUGE part in my battle with Cancer. From all the studies I have found regarding inhalation of Molecular Hydrogen, most suggest it plays a significant role in curing cancer, and also significantly reduces recurrence.

God Bless
Darol Mason

I am not sure what stage his cancer was. He had 5 weeks of chemo and radiation. They removed about 6" of his esophagus and some of his stomach. The surgeon felt he removed all the cancerous mass, so far, the Pet scan has shown no cancer. After his surgery, he went for immunotherapy.
He had a long recovery, maybe if younger, he would have gotten better faster. He was always healthy, he never needed to take any medicine, now he takes Pentazole to help with acid reflux. It has been a long road, but he is still here and doing well.
Best of luck to you both. It will not be easy but there is light at the end of the tunnel.
Ps. My husband could not drink water but could eat some pureed food and Chocolate Mighty shake from Hormel.