| | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | It just slides out. No pain at all according to Kevin. We were in the RO's office. I watched. No big deal at all.
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | I guess some people can tolerate pain better than others. Mine is super sensitive still and it's been in since August. Always goopy and I have to use antibacterial soap s few times a week, plus once a week with hydrogen peroxide. I'm trying to psyche myself up.
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Jun 2013 Posts: 18 "OCF Down Under, Kiwi" Member | | "OCF Down Under, Kiwi" Member
Joined: Jun 2013 Posts: 18 | It sounds to me you should be washing around your PEG daily also uses a smear of an antiseptic like Fucicort. I have just had my PEG removed and replaced with a Mi-key - no anesthetic no pain no issue - you will be just fine :-)
Osteosarcoma radiotherapy right forequarter amputation 1961
Carcinoma of Right Larynx with subglottic extension
Total laryngectomy with right radical neck dissection 2000
Tracheostomy
Radiotherapy June-July 2001
Aggressive recurrence of the same May 2013
Neck Fistulas June 2013
P.E.G July 2013
Mi-key Oct 2013
Currently Chemo was : XELODA (Capecitabine) Now Carboplatin and now Gemcitabine !
| | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Thanks for the encouragement, and I do wash daily with antiseptic soap and use some neosporin too. I will can check into fucicort. I think on top of being a wreck about it, bottom line... I just don't trust the dr. and that's an issue I'm going to have to resolve.
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | OK...everybody needs to remember that different PEGs have different terminations inside. There are the ones with the deflatable balloons and then there are some with more rigid ends that need to be pulled out. These are the ones that are momentarily painful.
Bill's was pulled by an RN at our Moffitt appointment. She was sent in by our doctor there to do the dirty deed. I had to turn my head but looked back immediately after it was out and Bill was simply sitting there seemingly glad it was out and not in any real pain. There was a little seepage at the site for about a day and then it healed up with no other problems.
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | I think the mouth connotation might have to do with removing it so soon. He probably feels you'll be eating okay by that time with only minor pain so it's okay to remove it. That is what I would have gathered from that - there is minimal pain involved - I was tempted to save the trip down to the hospital and do it myself  but I relented and had them remove it... Literally as everyone else said - a 30 second procedure. If it's sensitive at this point the pain may be a little more intense when they immediately remove it (we all have our own pain tolerance -- but is much faster and easier coming out than going in. it's a lot like a splinter, irritating and sensitive while in, but usually almost immediately much better when removed. I really only felt a tug. Hugs... You'll be fine.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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