| | Joined: Jan 2008 Posts: 6 Member |  Member
Joined: Jan 2008 Posts: 6 | Hi Haley, how are you feeling? I hope the pain has subsided by now. Check in soon and let us know how you are doing.
Diagnosed with mucoepidermoid carcinoma right side base of tongue. Removed growth from tongue as well as modified neck dissection with mandible split on 12/11/07 with 12 nodes removed. 2 cancerous. Scheduled to start Rx 2/12/08.Finished 3/24/08 30 treatments. no chemo
| | | | | Joined: Jul 2007 Posts: 20 Member | | Member
Joined: Jul 2007 Posts: 20 | wish I'd seen this when you posted it...I had the same thing happen...pain was so bad I went to the ER...here is what was wrong...gas!...apparently when they placed the tube, I was pumped full of air, or something like that...I was never real clear on that...they didn't make sure I was "deflated" before i woke up...so, it was a major gas attack...not the "pew" stuff, just air...hope this helps anyone else that has this happen to them | | | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 | Mine was too tight to for the first few days. I felt like a butterfly in a showcase complete with stake! After it was loosened it was ok.
Hang in there.
Markus
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | | Joined: May 2008 Posts: 14 Member | | Member
Joined: May 2008 Posts: 14 | Hayley: not sure if you saw my post about my Father in law with Esophogeal and Gastric Cancer. Now, further dignosed in his liver as well. He designed a peg tube belt because of problems he had with his feeding tube during daily activities. We are in the process of getting the belt in the products list for this site but if you want to check out the belt and beneifts of it, go to www.thepegbelt.comIt dramatically changed his life while he had the feeding tube in. Please keep me posted and best of luck.
Todd
father in law- stage 4 Esophageal and Gastric Cancer- was heavy smoker
| | | | | Joined: Dec 2007 Posts: 13 Member | | OP Member
Joined: Dec 2007 Posts: 13 | Hi Todd, I have only just seen this post...wish I'd of seen it earlier as I would of got one. I have no had my PEG removed, thank you though  Hayley
Hayley, 19. Diagnosed at 18 with cancer of the larynx (T4n2) on 20.11.07 Taxotere, cisplatin and 5FU x 3, carboplatin x 7 and 35 radiotherapy treatments Found out I am in remission on 21.08.08 www.kickingcancersarse.blogspot.com | | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Hi Hayley,
I feel ya' sister! I am right where you were in February. I got my PEG put in last Thursday and it hurts more now than it did then. I'm sucking down ibuprofen, but sitting, standing and lying down are agony. Tomorrow I have an appointment to have it loosened, and I'm praying that like Markus, the pain will subside. I'm on the heavy side and its really, really tight.
(No need to comment, I just needed to vent!)
-Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Margaret, I'm sorry you're going through such pain with the PEG. Hopefully having it loosened will help a lot. Some of it may just be the pain from inserting it through stomach muscle--although in my experience, that got better after 3-4 days.
Nelie
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"
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Nelie,
This is the third abdominal surgery I've had, and I can't believe how much it hurts! I had laproscopic surgery to remove my gall bladder and a laproscopy to remove on ovarian mass and I recovered very quickly from both of those. I certainly didn't expect this to be worse.
Thank you, by the way, for all of your posts. I enjoy your grace and generosity.
-Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | When I had a PEG, I took a neck holder for Flash memory, that had a disconnect so I could easily free the PEG, and used it to support the PEG under my clothes -- No tape and the PEG hung free.
I also found out that I could adjust where the PEG tube fit inside, so I could make the flow better for sitting or standing, by pull-push and a little twist on the tube -- There was definitely a wide spot on the inside end of the tube so it wouldn't pull out of the grommet.
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: Aug 2008 Posts: 113 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2008 Posts: 113 | My husband has had a peg since April. He had no problems with pain or discomfort, but I find this interesting. Some of the stitches around the peg started to come loose causing him discomfort and the skin was becoming irritated due to the loose stitches. This surgery was done in Pittsburgh. I did not want to travel to Pittsburgh so I called a surgeon here in New Castle PA to restitch the broken stitches. The doctor took one look at my husband and yanked out all the remaining stitches. I looked at him like "what are you doing"? He said he's never put in stitches when doing the PEG surgery and thought the doctor who performed the surgery shouldn't have either. I was just curious if anyone else has stitches.
Husband 2/3 tongue removed March 2008. Free flap. . Stage IV. Radiation and 3 chemo's (cisplatin,taxol & erbitux). .Pet scan Aug 08 showed mets to lungs .Oct 08, recurrence. - In the arms of Jesus, July 15, 2009
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