| | Joined: Jun 2008 Posts: 28 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Jun 2008 Posts: 28 | Hi Nelie,
Thanks for info. Have you had a peg for years?
Karen-age 47 5/07stage 1 tongue right side partial glossectomy 3nodes removed on right. 6/07 didn't get it all-2nd partial glossectomy. 11/07 stage 3(?) partial glossectomy,flap.all nodes removed on right side. 1/08 peg tube. IMRT 39tx,chemo-cisplatin. 5/08 left side 1 lymph node w/cancer - removed
| | | | | Joined: Jun 2008 Posts: 28 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jun 2008 Posts: 28 | Thanks everyone for your input. My medical oncologist & radiation oncologist at home and my surgical oncologist at the cancer center in Philadelphia all said get it out, so I guess it's coming out this week. Hope I'm making the right decision. I'm trying to go back to work soon and with the job I have it would be difficult with the tube. I am pretty nervous about the whole thing though.
Karen-age 47 5/07stage 1 tongue right side partial glossectomy 3nodes removed on right. 6/07 didn't get it all-2nd partial glossectomy. 11/07 stage 3(?) partial glossectomy,flap.all nodes removed on right side. 1/08 peg tube. IMRT 39tx,chemo-cisplatin. 5/08 left side 1 lymph node w/cancer - removed
| | | | | 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 | I'm just comparing what I went through without a port to what I think it would have been with a problem free port.
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | David,
I understood.
And thanks.
-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: Jun 2008 Posts: 3 Member | | Member
Joined: Jun 2008 Posts: 3 | Karen:
There is a gentleman in my support group who has had his PEG tube for the past 4 years. It is replaced every 6 months with a new one as to hamper infection. I also asked one of the infusion nurses at the Virgina Piper Cancer Center here in Scottsdale, this question. She said yes it can be done a second time. She has seen it done on several occasions. | | | | | Joined: Jun 2008 Posts: 28 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jun 2008 Posts: 28 | Schwaby,
Thank you so much! My radiation oncologist convinced the doctor to remove the tube. I go today and was so worried,wondering if it was the right thing to do. I'm still nervous about the actual removal of the tube - especially since I don't have much faith in the gastro doc. He's the only one during my treatment I have disliked. Your post made me feel much better. Thanks again.
Karen-age 47 5/07stage 1 tongue right side partial glossectomy 3nodes removed on right. 6/07 didn't get it all-2nd partial glossectomy. 11/07 stage 3(?) partial glossectomy,flap.all nodes removed on right side. 1/08 peg tube. IMRT 39tx,chemo-cisplatin. 5/08 left side 1 lymph node w/cancer - removed
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Just FTR, replacing a tube with another is not the same as pulling a tube, letting the insertion site scar over (which it does really quickly--that's why they say to go to the ER if it comes out-scar tissue starts forming over the site within 24 hours), and then trying to insert a tube again weeks or months later.
Karen, I have had a tube for a little over 3 years now because of long term swallowing difficulties--only had it replaced once. But I haven't had any infection probelms either.
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 2007 Posts: 24 Member | | Member
Joined: May 2007 Posts: 24 | HI Karen
I just had mine put back in after 6months of it being out. I never heard of the scar tissue issue. I had to have trach put in so he wanted to put the peg in it is not in the same place as the first one.
SCC T3N1 right side tongue DX7/24/06 44 yrs old
Tx 42 IMRT started 9/01/06 Cysplatin & 5fu 2x treatment ended 10/31/06. Partial neck discection 3/07 on right side.
Had tracheostomy 4/08. Had total Laryngectomy 6/09
| | | | | Joined: Jun 2008 Posts: 28 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jun 2008 Posts: 28 | Well, the tube is gone. YAY!!! A little sore but nowhere near the pain I had when getting it in. Hopefully i will never need to see that doctor again!
Karen-age 47 5/07stage 1 tongue right side partial glossectomy 3nodes removed on right. 6/07 didn't get it all-2nd partial glossectomy. 11/07 stage 3(?) partial glossectomy,flap.all nodes removed on right side. 1/08 peg tube. IMRT 39tx,chemo-cisplatin. 5/08 left side 1 lymph node w/cancer - removed
| | | | | 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 |
Karen:
Congrats on being rid of the peg!!!! Im sure its a huge relief with having it out. Hope you feel better quickly from having it removed.
Christine
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  | | |
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