#46305 09-15-2005 09:16 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: Jul 2005 Posts: 624 | Hi --
Barry started his 6th week of treatment with a little excitement -- we were just purging his PEG (which he hasn't used yet) when it just -- came out! The little balloon at the end had gotten deflated. Oops! Now what? I called the triage nurse and she called our nurse, who called back and said she'd look when we got in for treatment. Apparently several g-tubes (and one j-tube) had failed in last couple of days -- 3 today! -- and Hopkins is sending the whole batch (of unused ones) back to the manufacturer. Nice. Luckily he's not dependent on it for hydration or food.
While we were driving up to Baltimore, the medical and radiation nurses and the nutritionist all conferred and concluded Barry should just leave it out. The rationale being he has a week left, he's not using it, maintaining weight pretty well and it would involve another procedure with 8 hour's fasting and sedation which left him sick for a few days the first time (and he lost 4 pounds) plus he'd miss a day's treatment. He agreed, saying he wouldn't go through that again! So now we just have to watch for any infection and make absolutely sure he drinks and eats enough. Just go to next level of pain-killers if necessary, I guess.
Has anyone else had this happen to them?
Gail and Barry
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#46306 09-15-2005 09:55 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Hi
No I've not been there but my understanding is that a PEG needs to be put back with in a short time scale, so if he has got this far without one, go with the flow. BUT remember this is not written in stone and can be changed at anytime in the furture if needed.
Good Luck
Sunshine...love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#46307 09-15-2005 10:24 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Jul 2005 Posts: 624 | Yes, they said within 24 hours if using same incision -- the other two of today's "failures" were schduled for re-insertion tomorrow as both patients are to some extent tube-dependent -- they couldn't do it today because both had eaten and drunk and they have to have empty stomachs.
Gail
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#46308 09-15-2005 02:16 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Gail,
I remember back in October 2000 we were scheduled to go on a trip, perhaps my mother's last one in her life as she was living way beyond all the medical expert's expectations. The night before we were to catch a plane to Miami and then Freeport, her tube came out. It was a GJ tube that had a long extension that went past the jejunum as she had to have special liquid that was in a partially-digested state, to no get to technical.
Anyway, at 8 pm the night before it came out and this was the 3rd one that had come out. The doctor told me to just re-insert it and it would work it's way back down, tape it up and bring her in after we got back. Otherwise, they would have to admit her and cancel the trip. He felt the trip under the circumstances might very well be her last amd she would enjoy it.
On our last night there, she pulled it out in the middle of the night. We still managed to re-insert it, tape it and begin the 14 hour journey home. She did get a fungal infection but otherwise we had a great time.
If Barry is eating well I guess I would trust the medical folks. I didn't use mine a lot anyway since when I was nauseas it didn't matter if it went down the throat or in the tube...the after effect was exacty the same.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#46309 09-15-2005 03:54 PM | Joined: Jul 2005 Posts: 150 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jul 2005 Posts: 150 | Odd, the gastroenterologist told my father to expect this to happen. The MD explained that the balloon would deflate and to just put it back in and tape it in place. We are expecting it to come out? I would go straight to the surgeon who placed it.
Dad Treated for T2N1M0 Tonsil Cancer August 2005. 35 IMRT radiation, 3 doses Cisplatin. Selective Modified Neck Dissection November.
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#46310 09-16-2005 05:31 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | eek. It doesn't sound so bad in Barry's case but it would be a nightmare for someone else dependent on it (which I still am--unfortuantely) to get most of their food and nutrition. Plus I would HATE having to go through that surgery again. Yikes.
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#46311 09-16-2005 06:54 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Jul 2005 Posts: 624 | There was obviously a difference of opinion even at Hopkins as to how to proceed -- the new RO resident said "they will just stick one back in the same opening, won't need sedation or fasting" (but it would have had to have been a new peg, the old one was defective). The nutritionist agreed, but neither of our two nurses (medical and radiation) did, saying "they will want to re-do whole thing and with no food or water in stomach." Anyway, our radiation nurse called the surgery area to make sure and they said -- "8 hours' fasting, sedation, new stitches etc." and she and Barry said to them, "oh, forget it..."
Barry was extra careful yesterday (firm lectures from RO and nutritionist to EAT and DRINK!) and his weight today was same as yesterday's. However he has his Friday afternoon queasies again and probably will eat lightly today -- but has a weekend to make it up!
TGIF!
Gail
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#46312 09-16-2005 10:29 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | I don't like OUR (non-professional) suggestion that these tubes can be re-inserted by the patient! If anyone else reading this has a problem with a tube that comes out PLEASE CONTACT YOUR DOCTOR!!
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#46313 09-16-2005 03:21 PM | Joined: Jul 2005 Posts: 150 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jul 2005 Posts: 150 | I re-read all of these responses and I don't think that any reply suggested what they should do? No one even merely implied: "Hey, just stick it back in Gail..." ?
Isn't it generally known in this forum that stories and experiences are exchanged?
Yeah Gail, my dad has a "Flakey" stomach. You guys have got to be finishing soon?
Dad Treated for T2N1M0 Tonsil Cancer August 2005. 35 IMRT radiation, 3 doses Cisplatin. Selective Modified Neck Dissection November.
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#46314 09-16-2005 04:51 PM | Joined: Sep 2005 Posts: 18 Member | | Member
Joined: Sep 2005 Posts: 18 | Speaking as not only the caregiver of my MIL with a feeding tube these last 3 yrs, but also my son who has had one for 7+ yrs, tubes do fall out. They have both had it fall out more than once (sometimes my son's gets pulled out even with the balloon inflated!). We changed both of them to gastrostomy buttons, much easier for feeds, and with the balloon style it is extremely easy to replace and in fact we have been told to replace them every 3 months. Now... it is suggested not to do this until the stoma is at least 6 weeks old and healed.
With the button, you attach an extension whenever you do a feed and detach it when finished. The button itself looks kinda like where you blow air into a beach ball. Nice to have a flat belly and no tube hanging down all the time.
When my son AND my MIL received their gastrostomies we were given a small foley style tube that we had for emergencies should the tube fall out on its own, and instructed how to use it so that the stoma did not close up. In some patients it has been known to close up within a couple of hours, or less.
I am really surprised that your surgeons/GI's are not informing their patients of this possibility and preparing them so they can take care of it themselves should it happen. But, maybe that is the difference between temporary vs permanent? Interesting! Or maybe it is the difference between the pediatric world and the adult world... I have found our ped docs are much more forthcoming and accepting of tube feeds than adult docs for my MIL are.
Anyway... just thought I would share our experiences...
Heidi | | |
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