| | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Nov 2009 Posts: 212 | This might be a weird one. I have had my PEG since Early July and for 8 weels I was 100% reliant on it. It was a life saver, for both food and drugs. I am eating 100% through the mouth now, I might use the PEG for water just to keep it clean, I will have it removed in a couple of weeks, I hate it and love it at the same time and in truth I am having a bit of anxiety over having it removed. Werid huh?
Steve
70 male, athlete...again
SSC of undetermined orgin , early july 09
40 tx radiation, 8 chemo cisplatin and ebuterx
finished TX in mid Sept 09
Clear at the 6 year mark!
Back to swimming, biking and running! just a tad slower
never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Not weird at all.
Hubby and I both had trepidation about having the PEG removed since it was so much help to him during the worst times. You feel like, "What if we need it again???"
We did the same thing with the port....dragged our feet about having it removed.
So, you are pretty normal, I say!
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 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Totally normal, I agree!
- 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: Aug 2006 Posts: 294 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2006 Posts: 294 | Steve,
I know just what you are feeling. I knew that for a few weeks my life depended on that tube for nourishment. Even once I began to eat by mouth again I began having thoughts of what will happen if for some reason I suddenly can't get enough nourishment by mouth, etc. It was almost as though I was trying to find some logical reason to keep the tube as a crutch, just in case. I say you are perfectly normal! I only hope they remove yours in a more comfortable fashion than they did with mine!
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 2007 Posts: 10,507 Likes: 6 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: 6 | If you have maintained your weight for at least 1 month without using the peg, then its safe to remove it. How about meds? Do you take them all by mouth?
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: Mar 2009 Posts: 147 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2009 Posts: 147 | Just get rid of it. Get a pill cutter for any meds u can't swallow whole. For me it was actually a sense of victory when it was gone. I won that round. I had dreaded the removal. I had been told it was painful - the PA compared it to childbirth. When the time came to have it removed I followed instructions - shut my eyes, took a deep breath and counted to three.....and waited....and waited....and waited....finally the PA asked if the pain was still unbearable. What pain! I hadn't felt a thing. Woo-Hoo it was gone! Don't look back Steve. That PEG represents where you have been, you are on a new journey now.
DX 2/10/09; Stage 1 SCC side of tongue; Partial Gloss; PEG in 3/3/09; 3 Cisplatin; 35 IMRT; PEG out 7/17/09; Eating via mouth and walking 3 miles/day 4 wks after treatment end. 50 pound weight loss; Clear PET 09/09 and 09/10
| | | | | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Nov 2009 Posts: 212 | I went to the oncologist today and he said get rid of the peg. I hit a breakthrough 10 days ago on swallowing, I eat like a pig now. Still take a swig of ensure for the realy dry stuff. I have even been to a few resturants. Today I actually ate a pickle and some onion rings with a burger!! It will be good to get rid of the appengage! BTW I think my Gastro wants to use a endoscope to remove it, not yank it out
He also scheduled me for my first PET scan post tx, will post the hopeful good news
Steve
70 male, athlete...again
SSC of undetermined orgin , early july 09
40 tx radiation, 8 chemo cisplatin and ebuterx
finished TX in mid Sept 09
Clear at the 6 year mark!
Back to swimming, biking and running! just a tad slower
never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | | Joined: May 2009 Posts: 27 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: May 2009 Posts: 27 | I had mine removed and it was a piece of cake. Once my weight became stable, I had it removed. Mine was a "no pain" experience, removed the liquid from the inside and it popped out. I don't miss it and tried to convince mt grandkids " this is where I was shot", they're not buying it.
Age 63, occasional drinker, smoked for 40 years
Base of tongue, stage 4,T-2,N2B
Cisplatin 1xweek
30 RT ended 6/25
PEG removed 8/23
PET Scan shows scaring but believed no tumors 9/25
| | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | Hi, Everybody,
I had my PEG removed last Friday (yea!) The Dr. just yanked it out - Yikes! It hurt like heck for a minute or so, but seems to be healed now. I just look like I have an extra belly button. It makes it a lot easier to get dressed!
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Nov 2009 Posts: 212 | Yeah, I did get mine out yesterday. So great! I will tell anyone who asks I was shot in 'Nam. Or maybe that I was one of the rare cases of having two umbilical cords.
Nice to have nothing sticking out of my bellie!
Steve
70 male, athlete...again
SSC of undetermined orgin , early july 09
40 tx radiation, 8 chemo cisplatin and ebuterx
finished TX in mid Sept 09
Clear at the 6 year mark!
Back to swimming, biking and running! just a tad slower
never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | | Joined: Aug 2006 Posts: 294 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2006 Posts: 294 | Steve,
Mine has been out for over 3 years now and is what I call my second navel. When I'm around small kids without a shirt, on rare occasions, I tell them it's an old gunshot wound. They always respond with "REALLY??!!". I have even been asked if that's what it is, usually by nursing folks, when going to other docs offices. Can't fool the docs though, the ones I have seen for other issues usually speak up and ask, "what did you have a PEG tube for"?
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: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | So, the hole doesn't go away, then?
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | The hole heals very quickly. There will be a small scar left.
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 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I have 5 holes from Nissen Fundiplication surgery and have had a few Drs and Medical people ask if they are scars from my being shot. LOL I guess they do look a lot like bullet holes from years ago. LOL . Damn jealous husbands anyhow..
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | I learn something everyday here on OCF -besides EZJim's amorous past  . So if I ever do get this PEG out, the scar won't just disappear like the trach hole did? Still, it would be a very small price to pay. charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | Steve is still waiting to get his peg out. Hasn't used it in about 6 weeks now but still his doctor says no. After all of the issues we had when it was first put in they are reluctant to put Steve through that again incase we need it. Very disappointing for Steve as he hates the rotten thing although he has gotten used to it. It must be very liberating to have it gone and to then be able to sleep on your stomach again for the first time in months.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
| | | | | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Nov 2009 Posts: 212 | I did get it out Wd, not only is it nice to sleep on my bellie, I can scratch my stomack without messing with the tube!
Steve
70 male, athlete...again
SSC of undetermined orgin , early july 09
40 tx radiation, 8 chemo cisplatin and ebuterx
finished TX in mid Sept 09
Clear at the 6 year mark!
Back to swimming, biking and running! just a tad slower
never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | It's nice to be able to dress without having to have a pocket to put the end of the PEG into. Also, to be able to tuck a top in. If the hole stays, maybe I'll just put a jewel in it:)
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Nov 2009 Posts: 212 | Hey, that is a hot idea, instead of a bellie buton ring a PEG hole ring....HOT HOT HOT!
Steve
70 male, athlete...again
SSC of undetermined orgin , early july 09
40 tx radiation, 8 chemo cisplatin and ebuterx
finished TX in mid Sept 09
Clear at the 6 year mark!
Back to swimming, biking and running! just a tad slower
never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | No I like the jewel approach better than the ring.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Mar 2009 Posts: 15 Member | | Member
Joined: Mar 2009 Posts: 15 | That was how I felt also. Since I hadn't used my tube in 6 months and had a good report in 12/08, I scheduled surgery to have my tube removed. Surgery was scheduled in late-February. I went in for another check-up in mid-February and had some suspicious growth again. Biopsy showed cancer had come back for the third time. So the removal was cancelled and I did really need mine again. Even more so now after the glossectomy because I can only swallow slightly. I have managed to get small syringes of chicken broth down and a few other thin liquids without coughing and or choking too bad. I have only had aspiration pneumonia once. It has been 8 months since my surgery.
Richard S
8/06 Dx; T3N1 SCC rt lat tongue & nodes. 9/06 part gloss, neck dissection. 9/06-12/06 35XRT; Cisplatin 3x. 2/08 & 5/08 Part gloss; Brachy 2x5 Tx. 7/08-10/08 HBO 60 Tx. 3/08 Dx SCC. Surgery 4/7/09 glossectomy & rt mandible replacement from fibula. 1/31/12 4th reoccur surgery and reconstruct cheek.
| | |
| Forums23 Topics18,168 Posts196,924 Members13,103 | | Most Online458
Jan 16th, 2020 | | |
|
