| Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | Guys,
it might be funny in retrospect, but really how smart is it when you actively deceive your medical team? You are providing them with incorrect information which is in part used to monitor/alter your treatment. Sure the PEG sucks but it really is not a big deal.
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Well, I did get the PEG, but I hate it. I wish they would take it out. It is a psychological issue for me as well. I love to eat and the thought that i need this because I may notg et to eat in freaking me out. Anyway, I thought about rejecting it, but reading everyone's story on here, I decided that it was in my best interest to get it.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Bob
Although I was not a Marine, I did run with the Corps 4 times in the Marine Corps Marathon (the People's Race). I proudly sport my MCM emblems on my water bottle and my wife was so tired of my wearing my MCM T-shirts that she made them into a Quilt !! You have hit the nail on the head brother. Us alpha males do not ever get a PEG if we can help it in any way as it is the one and only thing we can control. I have to tell you that passing the true Marines in the marathon was a real validation of who I am. Guys like me never got real medals so we made do with our imaginary PEG resisters medals. (Tip of the hat to Slim aka Wanda who first posted that there were no medals for us PEG resisters but did not fully appreciate the capacity of the male of the species to deceive itself plus award imaginary medals when we do something uber male like crush our doctors) Semper Fi indeed. 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 | Markus
I respectfully disagree with both you and Kevin. Giving in and getting a PEG is indeed a BIG DEAL. Brian already schooled me when I first posted that a PEG is indeed the way to go for those who are not willing to endure massive pain just to keep control. As Marine Bob spelled it out, the issue is CONTROL. I could not control the radiation nor my body's reaction to it. I could not control the chemotherapy nor my body's reaction to it. I could and did control whether or not to get a PEG. The reality is that the doctors are all driven by malpractice concerns to insist that you get a PEG when you lose a certain amount of weight. I concede that for the majority of OCF posters, the PEG is indeed the way to go. However, to steal shamelessly from the Marine Corps, the FEW and the PROUD tough it out. I was quite comfortable in losing over 20% of my body weight as I just went from 177 lbs down to 130 lbs which was more than my Marine Corp Marathon trim fighting/running weight of 126 lbs. I never had dehydration nor malnutrition just massive pain in forcing swallowing. This turned out to be quite good preparation for my current swallowing struggle. Again, I have no intention of restarting the PEG wars as I did before, but I am unrepentant that if you can deal with it, then surviving TX without a PEG is indeed the way to go. My sister does not understand this but my wife does. There is not a wrong or right here, but to assert that getting a PEG is not a big deal will always trigger an opposing response from me. Way back in law school we learned a basic Tort principle, you have to take the Plaintiff as you find them. For many of the OCF male posters that means that giving into this Cancer and getting a PEG is indeed a very big deal. To say otherwise is to sacrifice our very real feelings and emotions on the altar of medical correctness. Yes, now that I have a PEG, it is easy, but some of us still thrive on doing things the hard way. 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 | Christine
Ah, but all of the females here may have felt they did not want the PEG, but they got it anyway because it was the right thing to do. My point is that it seems that alpha males many times do not act rationally. Still I have to say that you are and have been more courageous than any alpha male including myself in your struggles here. I respect you to no end 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: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | I have had a PEG tube for 2 years and 8 months and I hate it so much.
As I am still having ongoing treatments, which require more surgery, and being unable to swallow for a week or two following each surgery, the PEG stays until all my surgeries are completed.
I went from 116 (53kg) pounds down to 83 (38kg) pounds during radiotherapy and chemo treatments and I understood that I needed it, but that doesn't mean that I was happy about it, because I wasn't. I wasn't really given a choice by my medical team. I was only suppose to have a PEG for about 6 months max!!
Summer has started a little early here and with temperatures already around 93 degrees (34C). Once again, there will be no swimming for me this year or even being able to sit in a hot tub - due to the possibility of infections with a PEG... to me the PEG is a huge deal.
Karen
Last edited by Karen Rose; 11-19-2009 05:12 PM.
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | 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 | Karen
Because I am an self proclaimed "Old Frack" as well as an autocratic Alpha Male , I am not ashamed to say WOW -DID YOU JUST PROVE ME WRONG!. I sadly know the whole "6 months" routine and AMAZED at 2 years and 8 months. I am actually relieved on my Civil Rights side to see that PEGAPHOBIA is an equal opportunity affliction. I also hate no swimming, no hot tubs. Bear in mind that surgery PEGs sound like necessity to me as opposed to free choice. Still, it is only those who don't have to face the fear of always having a PEG who can scoff at our concerns. Sadly, I wish I was one of them. 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 | Angelia
I have tried not to step on your Cancer blog posts at the risk of appearing unresponsive. So I am glad you posted here. As with Christine, Karen and yourself, I understand now that female OCF members can hate a PEG as much as us guys. That is good to know, but I still think that guys resist the PEG despite their doctors advice more so than gals. What synchronicity is it in the independent wearing of heavy boots and concealed weights by guys to "deceive" their docs in order to avoid a PEG? This is NOT a judgmental thread, just an exploratory one. 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: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | That explains why my chemo doctor was one step ahead of me when I tried to do a 'weigh in' holding my handbag (it looks and feels more like an overnight bag)
He politely put his hand out and took it from me saying that "we don't want to try and trick the scales do we?"......then I got a lecture about my weight loss (even with a PEG), he had obviously seen that sort of behaviour many times before. So obvious,... but it was worth a go at the time.
Karen
Last edited by Karen Rose; 11-19-2009 06:47 PM. Reason: add more info
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | 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. M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
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