#99232 07-10-2009 06:59 PM | Joined: May 2009 Posts: 72 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: May 2009 Posts: 72 | My husband finally got his PEG tube today. We are on 19th day of radiation and completed two rounds of chemo. He is in a lot of pain, but we figured that would be the case considering they just put a hole in his stomach. He had to take his first pain meds today for pain! I mean a lot of pain!!! The docs said he might need Tylenol after the procedure. We opted for a stronger med. just in case. I was kind of wondering why the doctor would suggest Tylenol when he is in such considerable pain? The meds are working which we are grateful for. It was a bit of a shock to see him so tortured..especially since we opted for this procedure. Just wanted to check up on others experience with pain. I read somewhere some peoples pain lasted a week others didn't have much pain at all.
Vanessa
Jeff age 49 DX 5/8/09 Tonsil cancer T2N2BMO. Tonsillectomy 5/14/09. TX: Cisplatin 3x's every 21 days w/ 33 Rad concurrent. 2-3 nodes on right neck affected. PEG 7/10/09. Chemo/rad start 6/12/9, TX finished 7/28/09. Extended TX 3 more chemo/Cisplatin/5FU/Docetaxil start 9/11, Clean PET 10/29/09.
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | I've had three PEGs, two by endoscope with sedation and one by fluoroscope with a local, and in all cases the pain was only a day or so and it was definitely down at Tylenol level.
If his pain persists, he should check back with the doctor.
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: May 2009 Posts: 72 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: May 2009 Posts: 72 | Pete,
Thanks for the heads up. We will see how he feels in the morning. Vanessa
Jeff age 49 DX 5/8/09 Tonsil cancer T2N2BMO. Tonsillectomy 5/14/09. TX: Cisplatin 3x's every 21 days w/ 33 Rad concurrent. 2-3 nodes on right neck affected. PEG 7/10/09. Chemo/rad start 6/12/9, TX finished 7/28/09. Extended TX 3 more chemo/Cisplatin/5FU/Docetaxil start 9/11, Clean PET 10/29/09.
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | I had a very painful experience with PEG insertion, the first time they tried they couldn't do it due to how thick my muscular wall was (just coming out of wrestling season where I coached). The next they mildly sedated me, forced air down my throat to bloat me and then with a local made the inscision. I felt everybit of it and much worse the next few days afterwards as the air was escaping my system....it sucked and I was glad for opiates, I was only on hydro+tylenol at the time though and it did only a little to curb the pain.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Jun 2009 Posts: 24 Member | Member Joined: Jun 2009 Posts: 24 | Hi, Vanessa... I guess I can't really say if I had a lot of pain or not with the PEG insertion. I was given morphine every 4 hrs because I had the RND, tonsilectomy, and PEG all done at the same time, so I was kept sufficiently loopy for several days. After I got home, I don't recall the PEG site being extremely painful. I'd call it more like "annoyingly uncomfortable" for the first week or two. I hope your husband gets through his painful days quickly.
Dana, Male, Age 52, DX 11/08 SCC right tonsil, Stage 3. RND, tonsilectomy, and PEG install done collectively 12/26/08, Cisplatin x3, IMRT x35. Post-TX PET clear 9/09, PEG removed 9/09, PEG stoma surgical repair 9/17/09. Dx renal cell carcinoma 11/09. Partial nephrectomy 01/10.
| | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | My husband was in a lot more pain from the PEG insertion then the neck disection. It was also the first time he took anything stronger than Tylenol. His pain lasted for around 5 days.
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: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Vanessa,
Pain "like you have been kicked in the stomach by a horse" is a common complaint for a few days after the procedure. If it continues, then you need to squawk. My Bill has a very high pain threshold but his Peg surgery was very painful and he was laid low for about three days...after that he slowly quit being sore like any other surgery....and never had another moments trouble with his Peg tube...we just cleaned the area with, first sterile saline, and then just wet guaze around the site. We used the slit pads to protect and absorb the residual gunk that will always be there and wrapped his belly with a large velcro- ended Ace Bandage that kept the tube tucked.
Tylenol is not adequate to handle this pain...let's suggest the doctor go thru it and see for himself.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | Joined: May 2009 Posts: 72 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: May 2009 Posts: 72 | Thanks everyone for your feedback. I'll keep an eye on him for the next few days. It seems to be easing up a bit already.
Jeff age 49 DX 5/8/09 Tonsil cancer T2N2BMO. Tonsillectomy 5/14/09. TX: Cisplatin 3x's every 21 days w/ 33 Rad concurrent. 2-3 nodes on right neck affected. PEG 7/10/09. Chemo/rad start 6/12/9, TX finished 7/28/09. Extended TX 3 more chemo/Cisplatin/5FU/Docetaxil start 9/11, Clean PET 10/29/09.
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