Has anyone made it through radiation and chemo without a feeding tube?

Donna,

I'm not familiar with the surgery-first path. Was this an esophagectomy? If so, it seems as though you husband won't need a lot of radiation to his new "conduit." Not sure where they will be targeting, etc.

My wife had chemo/radiation before her esophagectomy. She almost needed a feeding tube to get through that (due to inflammation), but she did not. Importantly, what helped her avoid the tube was IV fluids, which she could schedule as needed on an outpatient basis, at the infusion center.

She got her J-tube on the same day as her esophagectomy. This was at Mayo/Rochester. Care there was outstanding all around, with one important exception: faulty J-tube insertion. A leak led to a life-threatening infection, which Mayo doctors and nurses intensively managed for several days at her bedside. During this time, the J-tube was first repositioned and then removed altogether. My wife's nutrition plan changed to oral feeding as of then, and she went home a few days later than expected.

She has done well since then with her nutrition and with her adjustment to her new digestive system.

She did have a "recurrence" or metastasis of her cancer on her first at-home scan (4 months or so after her esophagectomy) in two retroperitoneal lymph nodes. So, she's back on chemo and, for the first time, on immunotherapy, as well.

From her experience, I would recommend immunotherapy as early as you can get it. If she had had it earlier, I think she might have avoided the recurrence.

Good luck to your husband and to you.
Dave

Hi Donna. Feeding tubes are simply tools to be used... if needed. For me, as I was being diagnosed, I could barely swallow. So they popped in a J tube right away... I was still 3 weeks away from the start of my chemoradiation treatments. But as my treatments started I could not swallow a tiny sip of water. So... without a feeding tube, I would have died. Hydration and calories are important for getting thru treatments... and then surgery.

But many are swallowing just fine as treatments approach... so, if a J tube is not needed, no reason to get one. And usually (not always) the ability to swallow only improves as treatments go forward. Nice! Your J tube can sit idle if not needed, just push a bit of water thru it maybe twice a day to be sure it stays clear. My treatments opened up my esophagus nicely a few weeks in... I did not use my J tube for the last 6 weeks leading up to surgery. Of course the day after surgery I was back using it... and had it removed 4 months later. It pops out in 30 seconds in the doctors office. But both the patient and doctor should agree its now time to come out... the patient's weight is stable, enough is coming in by mouth.

Now... even though J tube surgery is usually just an overnight stay procedure... it is still surgery, and must be done by a competent surgeon. I've seen a few of these botched... not correctly installed into the jejunum... not properly secured at the surface (stoma)... some not even inserted into the right section of intestines!

Now, even if this surgery is done perfectly, it doesn't mean the patient's J tube feedings will go smoothly. Most are just fine... maybe the patient has to adjust the feed rate to see what works for them, day or night (for instance I could feed at 85 ml/hr during the day, but dialed it down to 70 ml/hr at night). Also, sometimes a patient has a reaction to certain feeds... so there are other brands out there that can be tried. But the key is getting these needed calories (500 cal/carton usually) in the patient. And adding water to the feeds can be helpful... thinning them out and adding much needed Hydration.

But yes, some of us seem to have more leaking out of the stoma... and out onto our tummy skin. But if done correctly, and proper surface suturing, the j tube should be secure and anchored inside the jejunum. And cleaning around the stoma every day or two, changing the gauze pads... important. Be well.

Gary

Would a tube inserted through the nose be possible?
Our medical team wanted to avoid stent & G- / J-tube to avoid infection & other complications. They were so accustomed to G & J tube that they didn’t even think to consider the one inserted through the nose. Because a friend had used the nasal tube, I was prompted to ask & they agreed that it would be a possible option.

Fortunately chemo & immunotherapy + hydrogen inhalation opened up his esophagus just in time so he made it back to oral nutrition without any tube. However, he never faced surgery so I’m not sure whether the nasal tube could work in that case.

A friend who also faced esophagus cancer used a nasal tube for 7 months.

We would have never considered that possibility. Thanks for the information.

We hadn’t thought about the new j tube possibly not being anchored well . But you promoted us to pay more attention and realize that it doesn’t have a suture, or a stitch, to anchor it like the original one did. Thank you for sharing your thoughts. Donna

Thank you. We’re at home now and are going to be extra watchful for signs of infection. It’s so scary. Donna

NG tubes are ok... but are a bit nasty since it's like having a perpetual sore throat... or very irritating at the least. The other problem is... if the esophageal tumor is pretty much blocking the esophagus... this NG tube won't pass down below this point and into the stomach. So a J or G tube is independent of what's going on in the esophagus... and as I said, can be a very long term solution.

Donna, how are you and your husband doing now? Did things get sorted out with the feeding tube port?

John's feeding tube port is leaking less. He's using an ACE bandage to stabilize the loose pieces. Hopefully this will help keep it from getting pulled out as he tosses and turns during the night. His doctors think he needs to keep it in case he needs it during his 5 weeks of radiation. He's getting Proton Therapy... his nurse at the Proton Therapy Center told us that most patients receiving this type of radiation don't need a feeding tube. The doctors, including the one who put the original tube in, think the chance of an infection isn't enough to need to take it out though. Thank you for asking. Donna

My husband hasn't needed a feeding port yet, but he continues to use his medication port. He was diagnosed in November 2022, started chemo in January 2023, then chemo and proton radiation in May of 2023 at Mayo. He did well and continues to do well. His cancer had subsided per scans in July and Sept of 2023, but in Dec 2023, cancer showed growth again so he's in chemo again. So yes, no feeding tube throughout chemo and radiation, so far so good.