| | Joined: May 2009 Posts: 12 Member |  Member
Joined: May 2009 Posts: 12 | I got my PEG before my treatments began because I didn't have much to lose. I was a little freaked out at first and it took about a week to get used to it physically. I didn't actually start using it until about 3 weeks into the treatments. But I quickly became accustomed. It was nowhere near as difficult or disturbing as I'd feared it would be. A week ago I finished 7 weeks of radiation and chemo and ended up maintaining my weight throughout, using mostly Carnation VHC. In fact, I even gained a pound or two! My doc told me point blank that without the tube I wouldn't have made it. I'm very happy that I had it. I'm still using it as I slowly start to feel better. But I can't wait till I can go back to eating by mouth.
Last edited by david1; 05-18-2009 09:18 AM.
Stage 2 SCC right base of tongue. 7 weeks radiation & chemo with erbitux. Peg tube. Concluded radiation treatments 5.7.09. Two recurrences, two surgeries. Most recent, a substantial glossectomy, 3/25/11. PEG tube. Minimal swallowing ability, but working on it.
| | | | | Joined: Jan 2009 Posts: 62 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 62 | I wasn't really given a choice when it came to having a PEG. They just had me have it inserted. I'm glad they did because I lost over 40 lbs and that was with the PEG and all of the feedings. Without it I wouldn't have been able to eat so I would have ended up with one anyway, I think. My biggest problem throughout the tx was that darn Amopostine stuff. I was sicker than a dog and nothing including water was palable. My one mistake was not forcing myself to swallow some liquid everyday so it took a little while to get going again, but I did. If I had to do it over that would be the one thing I'd change. Oh yeah, and I'd remember to ask for some medical marijuana...............I totally forgot about that stuff while in TX and was kicking myself later. LOLOLOL
DX 6/05 Rt Tonsil SSC advanced to lymph node. Stage 4b. RND, took tonsils, strips off the back of tongue, throat and nose. 19 lymph nodes removed only 1 bad. Once healed, 7 weeks of treatment including 35 IMRT, 7 Cisplatin, 7 Erbitux and 35 nasty Amophostine. Almost 11 yrs out now. Woooo Hoooo!
| | | | | 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 | They gave me some very expensive marijuana pills called Marinol (?) which I thought hey I'll get high and it will increase my appetite so all will be OK. Those pills didn't do a thing for me, either way, except put a dent in my pocketbook. Heck I think the're still in the refrig.
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: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I have been given just about every pain perscription there is and if there was an adsdiction connected to them, i never got them filled and if I did, I usually flushed the pills or put them in the trash. But unlike most people. I can fight pain mentally and my mind gets used to it. I still have my last Fentanyl patches, all but 2 in a drwer and I am trashing them today. Mind over matter works for me.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I should add that I have had so many surgeries and add the 12 kidney stones, I have experienced some heavy pain thru life. It's been a part of my life since the 60S.
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: 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 | Silly martin tried to fight the tube. But couldn't. We don't have carnation breakfast here. But for a long time he could eat liquid porridge with maple syrup, rice pudding, custard, and creme caramel. Then it all started tasting of salt. He kept thinking I was sneaking in some salt in his food. That's when he had to go for the tube because he weighed the same as me (9 stones for 6ft2).
It's not pleasant to put in or take out (I had to look away while I was holding his hand). But once it was in in he had no trouble.
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: 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 |
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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Whatever you want to pay for it...
Fourteen pounds.
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: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | David shame on you after all this time you still haven't learnt any "english"
16ozs = 1LB 14 LBS = 1 stone 2.2LBS = 1kg
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | 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 wondering about stones too. LOL Hell By my stream I have a lot of them. Liz,, could you make that a little easier for us foreigners? LOL 16 OZ= 1 LB 14Lbs ??= 1 stone 2.2 lbs= 1 KG LOL I am still lost only more so now. Come on sweet lady and make it easier
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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