#76013 06-21-2008 08:29 AM | Joined: Jun 2008 Posts: 28 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Jun 2008 Posts: 28 | I'm new to this site and this is my favorite forum area. It's been so helpful. I had a peg tube put in 1/07. Most of my tongue was removed in 11/07 and I have a flap. Between that and the upcoming radiation and chemo, doctors knew I would need it. I had a bad time getting it - should have been outpatient procedure, I was in hospital for 2 1/2 days. But eventually it turned out o.k. and I used it for about 2 months. I drink Carnation Instant Breakfast, smoothies and shakes and am starting to eat a little food. My oncologist,surgeon and radiation onc. all said peg could be removed. The gastro doc wouldn't do it.He said if I have a reoccurance I can not get another peg tube if needed. Has anyone had one removed and gotten another later?
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 | Karen, I think there are some people here who have but I was told the same thing by my gastroenterologist and all my other docs are backing him up. I guess it's something to do with scar tissue forming and making it hard to do again.
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 | That's exactly what I was thinking, Nelie, that its a scar tissue issue. I had both a Port and then a Hickman line when I was treated for lymphoma years ago so although my current docs would like to put in a port, it could be complicated by all the scarring I have. (They're going to wait and see if its a problem.)
- 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: 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 | You could always look into the nasal tube. I know it's meant for short durations but maybe that would work in a pinch.
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: 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:
I havent heard of anyone having the PEG twice. In fact my doc asked me if I was sure when we talked about having mine removed. He said he didnt want to have to put it back in, so maybe it is possible to get it a second time.
Dont be in a rush to get rid of it. Its better to have it and not need it then to wish you still had it if you run into any problems.
Believe me, nobody out there hates the peg tube more than me. Unfortunately, I had a recurrance so I still have the peg which is good cuz I struggle to eat now. I cant wait til Im well enough to be rid of both the peg and the port.
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: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | I think Amy's husband John had his PEG pulled then had another one when he was diagnosed with a recurrence. I'm not sure how long it was between when he had it pulled and when he got the new one--maybe it worked because it wasn't all that long.
Margaret--I hope they can do the port for you. That was such a blessing to have as I went through treatment (especially since I have veins that are hard to find). I see from your signature you're due to start radiation Thursday- I'll be thinking of you on that day. Have you already done the fitting of the mask and all that?
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: 73 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: May 2008 Posts: 73 | As David mentioned, a nasal tube is a better option as its not painful , only thing is it looks odd , i donno whether its temporary thing cause my dads having it since past 2 months now.
- Avinash
My Father,
Age 59, T2N1M0, Stage 3, smoker left 5 years back, casual drinker , NACT with TAXOL +5FU+Cisplatin x 2, and 70 Gy in 35# from 03/10/08 to 04/26/08, no surgery, After Chemo cycles tumor reduced 60%,
Cancer Free now !
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Nelie,
I'm actually hoping *not* to have the port, only because it would mean another 'procedure' and more anesthesia. If I can stay hydrated enough during treatment, my veins should be okay. If not, a port may become necessary.
I did have the mask and bite block made back on the 10th and I have to say, I already know when treatment is over, I'll never want to see that thing again! I don't like it one bit.
Thank you for your good thoughts.
-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: 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 | Margaret,
I was a stubborn and bad patient and didn't want to listen to my docs very much but if I had to do this Tx again with my knowledge I would definitely have a port put in.
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 know... I had to have a port during chemotherapy for lymphoma, but it clotted and had to be removed halfway through treatment. The surgeon was unable to get in a central line and I ended up getting a Hickman line. The trouble with me is, if there's something that can go wrong, it will. My PEG caused a nasty skin infection already, I can only imagine what trouble a new port and all my scar tissue would cause.
I'm a pretty good patient, but not a simple one : )
-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
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