| | 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 | Claudia,
Come on that's easy...... WWPT = World War Peg Tube
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | With all due respect, David was a pale imitation of a PEG Warrior in comparison to myself. I cloaked my arguments with a veneer of medical authenticity by scouring the web until I came up with a Swedish doctor at a Head and Neck Cancer conference who gave an interview positing that there was a correlation between getting a PEG and "forgetting how to swallow". I notice it is only ALPHA males like David, myself and Semper Fi Bob that wore our Non-PEG status as a medal of honor. As I have acknowledged before, I would have left the OCF board after my first battles in the PEG wars had David not sent me a private message of encouragement. Now that a PEG was a medical necessity - and Brian sorry but BMI or loss of weight does not make a medical necessity, total inability to swallow confirmed by failing a barium swallow test with only a quarter teaspoon of barium showing silent aspiration is a medical necessity, I have not just mellowed. Oh no, I am now like St Paul, who when he was Saul persecuted the Christians, until he saw the light and became the number one Missionary. So fair warning to anyone who sets off the next PEG War by recommending against getting one, I will CRUSH your misguided mission. In a nice OCF way of course 
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: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Hallelujuh, and pass the collection plate...they have seen the light!
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Aug 2008 Posts: 113 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2008 Posts: 113 | I learn something new everyday..............LKCDI
Husband 2/3 tongue removed March 2008. Free flap. . Stage IV. Radiation and 3 chemo's (cisplatin,taxol & erbitux). .Pet scan Aug 08 showed mets to lungs .Oct 08, recurrence. - In the arms of Jesus, July 15, 2009
| | | | | Joined: Mar 2009 Posts: 23 Member | | OP Member
Joined: Mar 2009 Posts: 23 | THANKS for all the posts....mom is doing really well, and she is not fighting to get thru radiation anymore, she is WINNING against cancer. She fought for three weeks to try and go without, and she fought bravely, but to stand up and say no matter what NO PEG I think that people can get thru it easier, and healthier with it. I know it isnt fun, and you plan schedules around it, but she is smiling and talking to people and not constantly thinking about how she is gonna get that fruit smoothie to make 1/2 the calories to survive on. I was not for the PEG before, but when you lose to much weight and can't fight to WIN then you need it!!! | | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Keep in mind that it's not only the PEG itself but the treatment the potential PEG patient is having -- It is possible to get by without a PEG when taking radiation, but that's not so with extensive surgery, so sometimes we have a choice and sometimes we don't!
It would be far more constructive to remind people to keep on drinking and swallowing and opening mouth (to stave off trismus) when undergoing radiation. Although I had a PEG during radiation, and used it for nutrition, I drank my water and I took my meds orally, thereby preserving the swallowing -- I didn't know about trismus and that one snuck up on me!
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: Mar 2009 Posts: 23 Member | | OP Member
Joined: Mar 2009 Posts: 23 | I agree that some need it and some don't but just dont stay away from it if you need it....yea everyone has a choice.... | | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Pete is quite right about the type of surgery the patient received. I made it through the ordeal with no PEG and weight loss of only 4 lbs. However, I had only a neck dissection, 16 rear teeth removed and radiation without chemo. I could eat most things going into radiation. If your eating ability is compromised going into radiation and chemo, your are most likely to need a PEG tube to get through it.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I think I qualify as having surgery. I refused the peg but at times like now, I wish I would have taken it.
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 | All of the teeth being removed and the tongue seed implants did me in to the tune of 70 lbs . Oh for some good food that I could eat,
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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