| Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | 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.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, 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 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | "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 (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | Joined: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 622 Likes: 1 | [quote=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 [/quote]
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
18 YEAR SURVIVOR SCC Tongue (T3N0M0) diag 06/2006. No evidence of disease 2010 Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.� Stephen Hawking | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | 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. [/quote] It's really as simple as that. charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | 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. 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | 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 mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | 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 | 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, 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.
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