#89848 02-11-2009 06:37 AM | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | Hi. Hubby will be getting the feeding tube put in tomorrow. Radiation and chemo will probably start next week. Can anyone who had the feeding tube put in tell me what to expect? Is the procedure painful? How will he feel afterwards etc.? Thank you. Wanda
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | Joined: Dec 2008 Posts: 126 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Dec 2008 Posts: 126 | Hi Wanda, Richard had his Peg tube put in on Dec 29th and started treatments Jan 5th. Words cannot describe how thankful we are that he only has 10 radiation and 1 more chemo to go. He's doing quite well still eating soft foods and using the tube 2-3x a day.
Richard was sore for about the first week and took pain meds. It was very strange to have something foreign like that in your body. He gradually adapted and after a couple of weeks felt fine with the tube. Make sure you have a good contact person to call if you have any questions about the tube. We had a great nurse who is always there to answer any questions about the tube and feedings. Little things about it can freak you out. but stay calm and talk to a contact person.
My husband is very thankful he has the tube. He stays well fed and hydrated with no weight loss at this point. He even "flashes" his guy friends and they are very impressed! This whole experience is so life changing and everything is so overwhelming that a good laugh is really welcome. Feel free to send us a private message and we will try to answer any questions you have. Again remember to find a nurse or contact person you can call with any questions or concerns. Good luck... Geri
Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
| | | | Joined: Feb 2009 Posts: 20 Member | Member Joined: Feb 2009 Posts: 20 | My father-in-law had a feeding tube put in and has adapted very well to it. He has maintained his weight and overall health. I think a positive attitude about the situation is very important in dealing with it. My father-in-law leads an active life and uses his feeding tube almost exclusively for his nutrients with Ensure several times a day. Good luck and stay positive! | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | I've had three of them now and didn't experience much pain at all, however, some folks have -- I guess it depends on what they hit on the way in! Getting it done beforehand gets it out of the way and the healing started on it before it's actually needed. One always has the choice of not using it, of course.
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Feb 2009 Posts: 7 Member | Member Joined: Feb 2009 Posts: 7 | Hi Wanda:
My PEG placement was uneventful and unmemorable. Only issue was that the surgeons stitched the flange down too tightly and the stitches caused discomfort. Nurses were upset (I was inpatient at the time) and finally got the stitches cut away. Skin healed.
Didn't use the PEG for nearly two months after that except once when someone brought me two litres of contrast for an abdominal CT scan (while I was on a strict nothing by mouth diet, IV fluid only). Was able to pull out the PEG and say "fill 'er up!"
Was a godsend later during IMRT when I was no longer able to eat enough.
Removal was even more unremarkable than the insertion. Surgeon simply deflated the balloon which was on the inside and pulled it out. Bandaged the hole and sent me on my way...less than 10 minutes total. The hole closed on its own within a few days. Interesting looking scar but otherwise...
Many here may argue against using a PEG at all. My doctors advised me to eat/drink as much as I could orally but were adamant that I manage to get sufficient nutrition, one way or the other. I was weighed weekly during IMRT and caught hell anytime my weight dropped.
Age 51 at Dx BOT SCC T4aN2cM0 Dx May 08 Tracheostomy/PEG May 08 Inductive Chemotherapy attempted Jun 08 Concurrent IMRT (x32) and Cisplatin (x2)/Carboplatin (x1) Jul - Aug 08 Selective Lateral Neck Dissection - 22 nodes removed - all negative - Sep 09
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | My first and third PEGs don't have much of a flange on them and it's not stitched down -- I can slide it up on the tube for easy access to the stoma for cleaning the gunk that accumulates there -- With my second PEG, the surgeon stitched it down and the nurse practitioner cut the stitches away, saying that they usually wind up getting infected. There seem to be a number of PEGs on the market -- My current one does not have a deflatable balloon, just a small one the Doc yanks out -- My second PEG was longer and had nothing on the end except an exit hole that was too small... This photo is a lot like my current PEG, although it has a larger flange (which is pulled up for cleaning around stoma) and doesn't have a shut-off valve: http://la.indymedia.org/uploads/2004/07/peg_tube.jpgHere's a partial photo of PEG similar to my poor second one -- Note end of PEG only has small hole, so as junk clogs it, the junk builds up and clogs the side ports one by one -- In my case, this type PEG was small enough that it actually fits inside the other PEG! http://www.cookmedical.com/di/content/lg_thumbnail/di_wogs.jpg
Last edited by Pete D; 02-12-2009 10:04 PM. Reason: Added photo links
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Jun 2008 Posts: 148 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2008 Posts: 148 | Hi Slim, it's in now so I expect he's dealing with a good bit of discomfort. Pain or soreness will subside each day and after a week or so all of it should be gone. For me, it was a great vehicle to down calories, nutrients and meds when it would not have been possible otherwise. I got mine about 2+ weeks into treatment. Best to both of you during the upcoming treatments.
Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
| | | | Joined: Feb 2009 Posts: 7 Member | Member Joined: Feb 2009 Posts: 7 | Hi Pete!
The surgeons had stitched the flange down (about the size of a dollar coin) I was told just to hold it in place while the wound healed around the tube. It was too tight to the skin and the nurses couldn't clean underneath it. There was a minor infection started and the nurses insisted that the stitches be cut away. An intern finally showed up with scissors, a needle and new suture, ready to cut the old away and restitch. Needless to say, she only accomplished the first half of her mission!
Age 51 at Dx BOT SCC T4aN2cM0 Dx May 08 Tracheostomy/PEG May 08 Inductive Chemotherapy attempted Jun 08 Concurrent IMRT (x32) and Cisplatin (x2)/Carboplatin (x1) Jul - Aug 08 Selective Lateral Neck Dissection - 22 nodes removed - all negative - Sep 09
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | My nurse practitioner not only removed the sutures, she cut away most of the flange!
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | Hi and thank you for your replies. John was/is in some discomfort from having the PEG put in but is doing o.k. He is having a CT Scan done today and the radiation planning started. I know I am just impatient but it feels like it takes so.....long to get everything started as far as the radiation and chemo. I'm anxious about all this but knowing that the cancer is there also makes me anxious. Again thank you for your replies. Wanda
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
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