| Joined: Jun 2010 Posts: 3 Member | OP Member Joined: Jun 2010 Posts: 3 | Most every Doctor I have seen urges me to get the PEG before Radiation starts........ I REFUSE TO GET IT CAN YOU CONVINCE ME >>\\??????
Ramon Gato Ladra
| | | | Joined: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 67 | Don't get it. Clearly you know more than all the doctors you have seen. What do you think a bunch of lay people know that your doctors do not? It is not our job to convince you of anything. Your job is to make the best decisions you can. Seems like you have your mind made up to me.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2007 Posts: 790 | I know - the though of getting a tube in your stomach is unimaginable. I know right now its hard to imagine not being hungry. Its hard to imagine every swallow being paintful. Its hard to imagine looking at a 16 onze bottle of liquid ensure knowing that it could make the difference between feeling like crap or giving you some sort of nourishment that will make you feel better... and trying to drink that small bottle was a huge feat for me. Its hard to imagine all these things until they actually happen. They might not happen to you. You might be able to eat through the whole experience but most people aren't able to. Eating & drinking become a major tedious chore.
Its only temporary and the better nourishment you get the less side effects you wil get and the better you will feel and the more you will be able to enjoy life through this treatment.
I know its hard to have to go though this. It sucks to feel vulnerable- and have such a basic funtion- like speaking eating tasting swallowing compromised.
If you don't get the PEG tube you might spend hours a day trying to get enough nourishment and hydration. You don't want to end of int he hospital sick and not be able to complete the treatments you need to conquer this disease. Its rreally that simple. Why make life harder for yourself than its already going to be?
Why not make it easier on yourself? The Drs. do have years of experience treating patients.
Tongue Cancer T2 N0 M0 / Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007 Surviving!!!
| | | | 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 | Where are you about to be treated? There are some major cancer centers and individual doctors that do not always think a PEG is suitable in all ciecumstances. Each patient should be evaluated seperately.
I also refused to get a PEG and my treatment experience was probably worse than many and there were many times I know I could have used it but looking back I am glad I didn't get it. The more you learn about this cancer you will learn that each of us can respond differently to the same set of circumstances. I say that because what worked for one may not work at all for another.
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: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Sounds like you are trying to show you are still in some kind of control and are deciding to forgo the peg tube. Its completely up to you. A peg tube is what I credit for getting thru OC 3 times. I wasnt able to eat due to radiation burns and loss of teeth. The peg tube is what I depend on everyday to take my meds and give me enough nutrition to survive.
Its your choice. As a new member, please understand we are here to help you not to act as a debate team on a tough subject. Most people who dont start out with one end up with the tube anyway. Its easier to do it now and then its there when you need it. You could suffer thru and end up with a nasal tube for nutrition. I think Davidcpa had one of those at the end. That isnt fun either. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Ramon
Nope, to paraphrase Bob Dylan, It ain't me you're looking for man to convince you to get a PEG. As a grizzled veteran of the PEG wars here on OCF, I'm on record as to my personal feelings and remain very glad I went the first year of TX without a PEG and would have done so a second time if I physically could have swallowed after the surgery. I believe that I am unique among all the PEG commentators in that I have done a full course of radiation and chemo BOTH ways, without a PEG in 2007 and with a PEG in 2009. So I can actually speak from personal experience instead of conjecture. It's so much easier with a PEG but "necessary" only if you can't swallow or eat enough to stay healthy. Everybody is different, and to many the PEG was no big deal at all, and all my fuss has been simply silly or even dangerous and irresponsible. 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: Jun 2010 Posts: 3 Member | OP Member Joined: Jun 2010 Posts: 3 | Thank You for your honest advise, I'm still pondering the idea.
Ramon Gato Ladra
| | | | Joined: Jun 2010 Posts: 3 Member | OP Member Joined: Jun 2010 Posts: 3 | Thank You Christine: It's a battle within myself on one hand I realize the PEG is a life saver for those who can not eat during Radio Theraphy, on the other hand I can't see me with that piece of whAtever hanging from my stomach.... THANK YOU VERY MUCH, I will not fight against my well being, it's going to be tough either way........
Ramon Gato Ladra
| | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2007 Posts: 790 | Yes it is completely weird and freaky at first but its not the worst thing. I actually really liked it when I felt so crappy and didn't want to eat...I was so thankful that I didn't have to suffer through eating when I felt nauseous and had no appetite and I was just relearning to eat. and I just felt weak and tired. I knew it was there to help me. The day I got it out was one of the happiest days of my life though!
Tongue Cancer T2 N0 M0 / Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007 Surviving!!!
| | | | 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 | Christine remembers well. I did have a nasal tube put in when I was in my 1st or 2nd week post Tx. I was really in bad shape, weight and fluid wise. Even as bad off as I was it was a painless simple 2 minute procedure, not counting the 2 hour wait to get the X ray taken of my stomach to make sure it was in the right place. I used it for about a week or so and when I walked out of my tunnel I called my doc on a Friday afternoon and he "allowed" me to pull it out myself, again total painless. I have talked about these tubes many times and I still don't know why there are not used more often??
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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