| | 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 | [quote=wfc]William 1949,
Believe me, If I start to have any problems eating, or lose too much weight, I WILL have the tube.
WFC[/quote]
Believe us, you will do both.
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: Jan 2009 Posts: 253 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 253 | WFC:
I can appreciate your reluctance to get a PEG. But consider that you are doing 40 treatments. That's a lot. I also believe that they put the tube in through your mouth, which if constricted, can create some difficulties.
One of the chief difficulties people have with chemo/radiation is dehydration. This can put you in the hospital. Although you may be able to eat, you may not be taking in enough fluids. The PEG will help prevent this problem.
There are more informed people than me on this list, so I will defer to the opinion.
Sandy
Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
OCF member/supporter
| | | | | Joined: Jun 2008 Posts: 148 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2008 Posts: 148 | WFC, I was 185 pre treatments. I did not go with the tube initially as I wanted to see if I could get through without. As I mentioned, I hit the wall early with bad mouth sores and other problems so I got the PEG immediately so I could make it to the goal line.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Sandy is sure right about dehydration. I ended up back in the hospital for 3 for it. I thought i was drinking a lt of water too. Now I still drink about 7 to 8 bottles of spring water a day.
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: 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 | If I had to do it over again I would definitely get a Port and I would have asked for daily fluids starting in week 4 and continuing until I walked out of the tunnel.
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: Jan 2009 Posts: 225 "OCF across the pond" Gold Member (200+ posts) | | "OCF across the pond" Gold Member (200+ posts)
Joined: Jan 2009 Posts: 225 | Martin refused the PEG for 4 weeks, but he was getting thinner and thinner, it was painful to see he looked like a grass hopper. He went from 12 stones to 9 stones and measures 6ft 2.(The weight converter told me 12st=168pounds and 9st=126pounds I am not sure this is right it seems a bit small to me.)
On the 5 weeks he gave in to the dietician and me pressuring him. He was so weak from the treatment the PEG was a God send. I was able to work from home almost every day for 2 weeks and I could feed him and make sure he stayed hydrated.
SO if it is offered go for it, it will stop you loosing weight and weakening, and you will be avoiding all sorts of problems.
Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | I have yet to see a compelling argument against having a PEG tube! As far as I can tell, there just isn't one. If you have it and you need it, its there. If you have it and you don't end up needing, you don't have to use it.
I had one, needed it, hardly lost any weight during treatment and didn't have any trouble with staying hydrated or taking meds. I continued sipping water as well as I could during treatment, despite it tasting awful (!) and when my mouth and throat were ready, I switched back over to eating. I admit, that part was hard, and I did lose weight during that transition, but I honestly don't understand what the whole anti-PEG kerfluffle is about.
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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | There seem to be two reasons against having a PEG -- The first is that for some people, feeding tube is a sign of feebleness and neediness and the potential 'PEGee' isn't ready to accept that (I learned that from Charm!); the second is that it is one of the few things in this whole mess that we seem to have a choice about, so some choose to be PEG-less as a form of defiance against the cancer.
Personally, I had no preconceived notions about PEGs, it was recommended that I get one, so I did.
The excuses about loss of swallowing and mouth opening are not valid because one can still do that even with a PEG (Although some of us were not warned about it -- I was given my PEG in a rush and no one really explained it to me). That's one of the prime reasons this forum is so helpful -- We educate each other by sharing our experiences, good and bad.
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Interesting, Pete. I actually wasn't given a choice, it was just part of the package. The doctors knew what was going to happen to me, and the PEG was just as much a part of the treatment as painkillers and antiemetics.
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 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I was asked if i wanted a tube and hell, I didn't have a flat tire and didn't know of any other kind of tube. LOL If I would have been told or it explained to me, I would have had one too. But the tires on my car were new and not flat.
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
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