| Joined: Jun 2009 Posts: 24 Member | OP Member Joined: Jun 2009 Posts: 24 | As of today, I've gone 20 days without having to use my PEG, and my docs have finally agreed to remove it on Aug 27th. (Woo-hoo!) Glad to get rid of it, (although I truly believe I might have died without it). I have the balloon type, and they'll just yank it out "caveman style". I'm sure they'll hand me the obligatory page of post-proceedure do's & don'ts, but I trust you guys more! Does it hurt much? How long should I take off work for this? Do I need to change what I eat until it heals? Any tips or advice would sure be appreciated. Thanks!
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: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Dana First, congrats on finally moving past the point where you depend on the PEG tube.
I will tell you exactly what the docs do. Im the biggest baby out there so wanted to wait til my port was removed to be rid of the peg tube.
When I went for the consult my doc said he could do it right then. I was hesitant but agreed and YANK!!!! It hurt really bad for about 2 minutes. No post procedure paper or anything. No restrictions at all, you will not need to miss work unless you do a physical job. I was able to finally stand up straight for the first time in a year and a half which felt amazing. Its only a sharp intense pain that goes away almost immediately. Your eating will be the same. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jun 2008 Posts: 148 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2008 Posts: 148 | Congrats as well on having it removed . . . a big step. To me, it felt like a bee sting and it was over in a flash. Very happy moment and no after effects. Now, the hole itself seals but it will take 2 to 3 weeks to more or less scab up and totally heal. No, eat away!!
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: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | Hi and congratulations on the PEG removal. I asked the same question a little over a month ago when John got his removed. My husband had the balloon type also. Everything I read on here said it was a quick, only hurts for a minute procedure. They had a very difficult time getting Johns' to deflate. They had to eventually numb the outside of his stomach and take a long Angio needle and put it through his stomach to deflate the balloon. After it was done he had no pain at all. It is almost totally closed over now. I just wanted to let you be prepared just in case it is a little difficult to get out. The doctor told John that they rarely have issues like they did with him getting it deflated.
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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | Some of the balloons are inflatable/deflatable and some are just like a small doughnut, plus some PEGs have nothing on the end and rely on curves and length to stay in.
My Gastro-Doc told me that if my PEG ever came out, get to an ER and have them insert a catheter to keep the stoma(s) from closing -- He said I would have about a five-hour window before it was too late.
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 2006 Posts: 294 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2006 Posts: 294 | Dana,
"Caveman style" just about describes it. When the Oncology nurse first told me that they just yank it out I assumed she was joking. WRONG! They had me to lie flat on my back on the table and then warned me and suggested I grip the sides of the table. It was then suddenly over and hurt like the devil for 2 to 3 minutes. It hurt so bad for the first minute that I was amazed that the pain went away so soon afterward. I was then told it would be okay to eat and drink right away but let me warn you of something. On the way home as my wife drove, we stopped to grab a fast food meal for me, including a carbonated soft drink. I should warn you NOT to do the same. As I drank while eating I suddenly noticed that my shirt became soaked as the carbonated drink was leaking through my stomach! Needless to say, we freaked out about this and called for one of my nurses as soon as we got home. The nurse we spoke with said something like "oh yeah, you shouldn't drink any carbonated drinks for the first 48 hours".
That turned out to be my learning experience and want to pass that along for what it's worth.
Bill D.
Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
| | | | Joined: Jun 2009 Posts: 24 Member | OP Member Joined: Jun 2009 Posts: 24 | Thanks for all the tips and encouragement. It's only five days away and counting! And, William, I'll remember to lay off the diet Pepsis for a while, thanks! Well, I survived my first day back to work yesterday. I've been a Bell Captain for 21 years, managing a crew of about 36 (downsized from 60+). I gotta say, the company I work for, Bally's Las Vegas, has been AWESOME through this. Not only did they hold my job for me for 8 months, they paid all of my insurance premiums so I wouldn't lose coverage. Now that I'm back, they're letting me work a day, take a day off, work a day, take a day off until I get my feet under me. Returning to work and getting the feeding tube removed marks the final steps for my transition from "patient" to "Survivor". I swear, it feels like Graduation Day. There were times through this when I felt I couldn't take any more of it, and was very close to giving up. But, my wife Diane, and my friends in this forum wouldn't let me just lay down and die. So, to all of you, thank you. You quite literally helped to save my Life. And to those just beginning to fight, know this: It CAN be beat. It WILL be rough. And the reward is SO worth the fight. Love and thanks to all.
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: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Dana, you are very fortunate to have such an undertanding employer. Usually its smaller businesses that are the ones who truly care about their employees. Its nice to see such a large corporation giving you a break and working with you. Your job sounds like it would be very interesting. Congrats on making the final hurdle back to your regular life.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jun 2009 Posts: 24 Member | OP Member Joined: Jun 2009 Posts: 24 | Thanks Christine. Good luck tomorrow. My thoughts and prayers will be with you.
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.
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