NG feeding tube post-rad or no?

katboots

Howdy! I'm caring for my dad and he's having some trouble I'm hoping to get some guidance with. His data:

III (T3, N1, M0)
Finished 6 weekes chemo/radiation May 31
Scheduled for surgery August 5 (was scheduled for July 5, but is too weak)
78 years old
Also has: congestive heart failure, copd emphysema, adult-onset diabetes (formerly controlled mostly by diet; now controlled with insulin over last three weeks)
6'2" and formerly 190 lbs; lost 20 lbs before diagnosis; now 147 lbs

He's been in fantastically good shape despite what may seem like a lot of health problems -- he was still working until three weeks into radiation. Worked out, normal life, etc.

He had a terrible time eating beginning halfway through radiation because of pain and then ended up with pneumonia and was hospitalized for 22 days, and got out last Thursday, and reached critical (primary doc's word) weight loss place Tuesday. He had an app't with surgeon Monday to assess readiness for surgery July 5; surgeon said no and postponed it with instructions to go home and eat. His throat began closing up (he described it as a lump in his throat; base of throat, not low esophagus/stomach juncture where the tumor is) Sunday afternoon (I assumed it was stress for next day's app't), and he began regurgitating the small amounts of food he could eat; same thing Monday and Tuesday a.m. (better Tuesday afternoon and evening). Wednesday same problem in the a.m. but revived and drank liquid diet all day. Today, he is again regurgitating everything. Tonight, he was deeply concerned and says he now is ready for an ng feeding tube, which was mentioned by surgeon as a nutrition option. It's true that he can't afford more weight loss, and it plays h*ll with his blood sugar to do some insulin, not be able to eat, etc and so on; the blood sugar whackiness makes him even more anxious.

He describes the lump as being like a trap door that closes. He can swallow water and his own saliva.

My fear is that a feeding tube down his throat is going to be an event from which he won't have a good recovery (i.e. a setback that will postpone surgery again). He can't have a feeding tube in his stomach or small bowel because surgeon says he can't tolerate any surgery right now. Any little thing at this point is quite a setback as he has grown so weak overall, is now on oxygen full time, has no muscle left, can barely walk.

I don't think he has scarring / needs his esophagus dilated and no docs have mentioned that either. I am wondering if there is an alternative to the ng tube. I'm posting to ask if anyone has any ideas. We're going to have to do this tube tomorrow if we do it, because of the holiday, and by Tuesday with no food he will be very weak and I fear he will wind up hospitalized over here where they don't know what to do with him. (His surgeon is in a big city on the other side of the state; he lives in Podunkville; because of his location, he also pretty much has no primary onco dealing with him on a regular basis.)

Anyway, thanks so much in advance for any thoughts. have been reading tons on here since his dx and it has been so helpful!

kat

Donna70

Kat, I had NG tube before surgery
Hi Kat,
I lost so much weight after chemo and radiation that the drs insisted on an Ng tube as they said I was not in good shape for surgery. I did not have all the other problems your Dad did but had neutropenic fever and had to be hospitalized, they stopped the radiation a little early and then could hardly swallow after my first chemo treatments, just could get liquids and some cream of wheat down. So about 3-4 wks before surgery the Ng tube was inserted by a radiologist and I was given a home nurse to help me start off with the feedings, my hubby was a big help. It did clog a lot but we managed to get them cleared with soda etc. But it did help me not lose anymore weight. One thing I wished I had done while I was under chemo and radiation was get the high nutrition from Nestle supplements and drink all day long, keep a cup of the stuff in the fridge and just sip it all day. Hope this helps, the ng looks like hell but after I saw a small child with one, I stopped complaining. Good luck, wish I had some other ideas. take care,
Donna70

katboots

Donna70 said:

Kat, I had NG tube before surgery
Hi Kat,
I lost so much weight after chemo and radiation that the drs insisted on an Ng tube as they said I was not in good shape for surgery. I did not have all the other problems your Dad did but had neutropenic fever and had to be hospitalized, they stopped the radiation a little early and then could hardly swallow after my first chemo treatments, just could get liquids and some cream of wheat down. So about 3-4 wks before surgery the Ng tube was inserted by a radiologist and I was given a home nurse to help me start off with the feedings, my hubby was a big help. It did clog a lot but we managed to get them cleared with soda etc. But it did help me not lose anymore weight. One thing I wished I had done while I was under chemo and radiation was get the high nutrition from Nestle supplements and drink all day long, keep a cup of the stuff in the fridge and just sip it all day. Hope this helps, the ng looks like hell but after I saw a small child with one, I stopped complaining. Good luck, wish I had some other ideas. take care,
Donna70

Thank you so much, Donna
I so appreciate hearing from you. I feel so uncertain how to proceed. It's good to know you got through the tube and then through the surgery.

Liquids (Carnation VHC, 560 calories per can, combined with Glucerna, like Ensure but for diabetics) and cream of wheat is exactly where he was at (except barely 400 calories a day of those) but then was getting down small portions of pasta w/cream and similar foods, plus 2800 calories daily of the VHC mix, starting two weeks ago. I thought he was making real progress toward being able to gain enough weight and strength back for surgery but then others insisted on a pet scan last Thursday before the doc said he needed it, and the fasting for that plus a ridiculous mess with his insulin during the fasting left him weakened again and we had to start from scratch. Then the stress for the doc's app't and we're just back at ground zero again yesterday.

He's so discouraged that I think a feeding tube would help from that perspective, but I didn't think he could have it in all the way until surgery, as you did. That's good news. It's the taking it out and trying to eat with an even sorer (is that a word? lol) throat that worried me, as that would be another discouraging cycle of setback.

Here we go into a brand new day and whatever it may bring. :-) Thanks again, Donna!

Donna70

katboots said:

Thank you so much, Donna
I so appreciate hearing from you. I feel so uncertain how to proceed. It's good to know you got through the tube and then through the surgery.

Liquids (Carnation VHC, 560 calories per can, combined with Glucerna, like Ensure but for diabetics) and cream of wheat is exactly where he was at (except barely 400 calories a day of those) but then was getting down small portions of pasta w/cream and similar foods, plus 2800 calories daily of the VHC mix, starting two weeks ago. I thought he was making real progress toward being able to gain enough weight and strength back for surgery but then others insisted on a pet scan last Thursday before the doc said he needed it, and the fasting for that plus a ridiculous mess with his insulin during the fasting left him weakened again and we had to start from scratch. Then the stress for the doc's app't and we're just back at ground zero again yesterday.

He's so discouraged that I think a feeding tube would help from that perspective, but I didn't think he could have it in all the way until surgery, as you did. That's good news. It's the taking it out and trying to eat with an even sorer (is that a word? lol) throat that worried me, as that would be another discouraging cycle of setback.

Here we go into a brand new day and whatever it may bring. :-) Thanks again, Donna!

ng tube came out at surgery
Hi,
They kept the tube in and it just came out right before I went under anesthesia. It was no trouble getting it in or out, different from the j tube. They did not insert a j tube for nutrition because if it got infected before surgery that would have messed me up and maybe not gotten my surgery as scheduled. The tube is smaller, at least mine was, it is a thin yellow tube. Mine was not like the one I had after surgery, which was a bigger gauge. I did not experience much discomfort with it in my throat. I hope this helps. With your Dad on the high nutrition, I am surprised he was having so much trouble but the stress and insulin troubles all added in. Good luck again. take care,
Donna70

katboots

Donna70 said:

ng tube came out at surgery
Hi,
They kept the tube in and it just came out right before I went under anesthesia. It was no trouble getting it in or out, different from the j tube. They did not insert a j tube for nutrition because if it got infected before surgery that would have messed me up and maybe not gotten my surgery as scheduled. The tube is smaller, at least mine was, it is a thin yellow tube. Mine was not like the one I had after surgery, which was a bigger gauge. I did not experience much discomfort with it in my throat. I hope this helps. With your Dad on the high nutrition, I am surprised he was having so much trouble but the stress and insulin troubles all added in. Good luck again. take care,
Donna70

Getting the tube now
Thanks so much; that was so helpful. It's been a confusing day, but we are now at the hospital waiting for the ng tube. Should have been outpatient, but a red tape snafu to do with different doctors being involved meant he had to be admitted. Sounds like the tube will be fairly easy to deal with, and not having to try to eat eat eat (and not succeed) will certainly be less stressful. Thanks again for all the info! :-)

kat