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#107465 - 11/20/09 07:47 AM Re: PEGAPHOBIA: a guy thing? [Re: Charm2017]
walknlite Offline
"Above & Beyond" Member (500+ posts)

Registered: 05/12/09
Posts: 945
Loc: Oklahoma
Yes, read my post. I am really on the verge of making them take it out and leaving it out. I could stand to lose about 75 pounds anyway. I also do not want to be to lazt with the swallowing and never thought about that the PEG could be something you could be dependent on. My goal is to never have to use the PEG. Heck even if you do not use it you have to rinse it our 3 to 4 times a day anyway. It has already become a pain in my a... well stomach. smile
_________________________
Angelia
31 at Dx.
DX: 4/30/09 SCC on floor of mouth,
T1NOMO.
PEt 07-09-09: All clear
Reccurrence: 10/21/09, BOT, SCC, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
Biopsy: 02/24/10 negative
PET Scan: 04/05/10 clear
PEG Out: 06/21/10

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#107469 - 11/20/09 08:10 AM Re: PEGAPHOBIA: a guy thing? [Re: walknlite]
slim Offline
Gold Member (200+ posts)

Registered: 01/23/09
Posts: 235
Loc: PA
"Charm,
I simply do not get the logic. I had one too and I hated it with a passion, but I was also lucid enough to realize that the little Goa'uld could save my life. So the real question the is this: What is more "manly", facing your fear and do what must be done or put your head in the sand.
Regarding the machinations to avoid getting one later on by using boots etc... that may be more of a male thing to do. Then again it is usually males who score high in the Darwin Awards."

Markus, thank you for writing what I have been thinking reading all this. I don't understand the logic of fighting having the PEG to prove a point or to award yourself some mental "award". It's a device to help keep you nourished and hydrated. My husband hated the idea of getting one and using one. He didn't start using it soon enough and lost 30 lbs. that he couldn't afford to loose. He eventually started using it the way he should after I told him what his doctors kept telling him "your body responds much better to treatments when it is well hydrated and nourished". He never had to be hospitalized during treatments for being malnourished or dehydrated. He made sure to drink liquids daily and never lost the ability to swallow. He also never tried to deceive his doctors by putting weights in his pockets.

Gee John NEVER used any prescription pain killers through treatment - does he get a mental award for that?
_________________________
Wanda (46) caregiver to husband John (55) non-smoker, casual drinker
1-13-09 diagnosed Stage IV BOT SCC (HPV positive)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 1x a week for 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-20-09, 12-29-09 - CT Scan clear
4/2010 - PET Scan clear

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#107471 - 11/20/09 08:51 AM Re: PEGAPHOBIA: a guy thing? [Re: brickster]
Kevin - Memphis Offline
"Above & Beyond" Member (500+ posts)

Registered: 05/14/07
Posts: 532
Loc: Memphis, TN
Originally Posted By: brickster

Kevin, I'm a Memphian also. Had my rad at Baptist east and chemo at West Clinic. Curious if we share any Doctors. Lawson is my oncologist and Marks was rad.

George


Hey George ! I was at UT Cancer, Yunus was Oncologist, Samant, Oral Surgeon and ElGandor was my Rads. Did chemo and Rads out at UT Bartlett (behind St.Francis) and surgery down at Methodist university (central).

Kevin
_________________________
3 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
Finished treatments (Chemo, Surgery, then Rad) 12/2006.
Clear CT @ 3 year anniversary 12-2009.


Don't let your nightmares cloud your dreams!

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#107473 - 11/20/09 09:14 AM Re: PEGAPHOBIA: a guy thing? [Re: slim]
Charm2017 Offline
Patient Advocate (1000+ posts)

Registered: 03/03/08
Posts: 1553
Loc: Alexandria VA
Wanda

I was never dehydrated nor had any nutrition issues so I had zero need for as you so aptly describe the PEG:
Quote:
It's a device to help keep you nourished and hydrated.
It's really as simple as that.
charm
_________________________
62 yr Old Frack 07:Stage IV BOT T3N2 HPV 16+ 40 IMRT:72 GY 8 ERBITUX No PEG 08:CANCER BACK Salvage Surgery&G-tube 5 CyberKnife:25GY 3 Carboplatin Thyroid pills Can't swallow to eat or drink

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#107475 - 11/20/09 09:24 AM Re: PEGAPHOBIA: a guy thing? [Re: Markus]
Charm2017 Offline
Patient Advocate (1000+ posts)

Registered: 03/03/08
Posts: 1553
Loc: Alexandria VA
Marcus

As long as you are asking trick questions: Have you quit beating your wife with your old PEG? Sounds silly, but no different in its illogical nature than your "do what a man does or stick your head in the sand" question. I was just going to let it slide because of your clever Stargate allusion but when Wanda quoted it again, I had to point out that your "real question" was anything but real.
Obviously getting a PEG was not "what must be done" instead just another overly broad doctor recommendation not tailored to the individual. I don't expect you to get the logic, just as I expect you put on the gown when told to. "Not that there's anything wrong with that" as they used to say on Seinfield. Let's keep it an honest dialogue on the PEG. To me and a passionate minority, the blanket recommendation for a PEG is open to question. Just like they used to recommend getting all your teeth out. And you know that those Goa'ulds did not work out very well for most folks. wink
_________________________
62 yr Old Frack 07:Stage IV BOT T3N2 HPV 16+ 40 IMRT:72 GY 8 ERBITUX No PEG 08:CANCER BACK Salvage Surgery&G-tube 5 CyberKnife:25GY 3 Carboplatin Thyroid pills Can't swallow to eat or drink

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#107478 - 11/20/09 10:32 AM Re: PEGAPHOBIA: a guy thing? [Re: Charm2017]
Eileen Offline
Patient Advocate (1000+ posts)

Registered: 05/21/02
Posts: 1991
Loc: Trenton, New Jersey
Ok, I've obviously not been on this board since yesterday morning. No PEGAPHOBIA is NOT a male thing. There is no way in h..l I would have gotten a PEG unless there were no alternative. My RO never even suggested that I might need one and I only lost 4-5 lbs during the entire treatment, pounds that I wanted to lose anyway. I didn't even know about peg tubes until I logged onto this forum 5 years later and everything that I have read since about the problems they can have, have convinced me that if any doctor suggested I needed one for something, I would go with a NG tube first. I admittedly had no surgery in my mouth and had no chemo with my radiation, so my experience was much easier than most. I also think it is a lot easier for a 5'5 120lb female to maintain her weight than a 6' 200 lb male. We have to swallow a lot less of that nasty/no taste stuff. So I will take my medal and pray there never comes a day when some doctor decides he needs to put a hole in my stomach 'cuz it ain't happening.

Take care,
Eileen
_________________________
----------------------
Aug 1997 unknown primary, Stage III
metastasis to one lymph node in neck; right neck disection, 36 XRT rad treatments
Aug 2001 tiny tumor on larynx, Stage I
total laryngectomy; left neck disection
June 5, 2010 dx early stage breast cancer

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#107484 - 11/20/09 12:39 PM Re: PEGAPHOBIA: a guy thing? [Re: Eileen]
davidcpa Administrator Offline
Administrator, Senior
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 5770
Loc: Gulfport, Florida
OK OK I think we have debated the Peg vs no Peg issue to a good stopping point. I'm sure it will come up again so let's let this post fade away.

We are all on the same team.

_________________________
David

Age 58 at Dx, HPV 16+ SCC, T1N2bM0, Stage IV BOT and 2 nodes, non smoker, casual drinker and exercise nut, Cisplatin x 3 with concurrent IMRT x 35, (70 Gy), no surgery, no Peg, Tx at Moffitt over 8/28/06. June 2007, back to riding my bike 100 miles a week as if nothing happened.

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