| | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | Pete,
I was not given an option (thank God).
Keep in mind that a PEG can help prevent many complications and has uses besides nutrition such as hydration, and medication.
Interrupting TX to deal with any of these complications significantly compromises the effectiveness of treatment plan.
We need to start the battle fully equipped to win.
Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | | 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 | Three years ago (yeah) I was given a choice by Moffitt. My RO really didn't want me to get one but he also said I couldn't afford to loose any weight. He also warned of lifelong swallowing problems that one could have if they did not continue to swallow during Tx. Since I had never had the experience of IMRT I knew I was tough enough to make it through without a PEG. Remember I didn't come to this or any site like this until post Tx so that's why this site is SO SO valuable.
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 | Casual correlation of the postings seems to indicate a definite male bias in "toughing it out" without a PEG. Pete summed it up well: both refusal to be "sick" enough to need a feeding tube and the option to say NO to something that this Cancer "requires"
in the way of treatment. I still am not ready for the PEG despite having one now for two months. It was a source of pride not to "have needed a PEG" as though that somehow made me less of a victim to the cancer. Like David, I did not find OCF until well after treatment, so I did not have the advantage of advice from those who had gone before me. It's sink or swim without a PEG in terms of swallowing, eating, drinking etc and for those of us for whom "sink or swim" was our swimming instruction method, that was just additional nostalgic allure of simpler times and easier problems. So at least I have one less worry during my CyberKnife treatments
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: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 Likes: 1 | My $0.02.... Get the Peg. I am one that is glad I had it, even with all the problems I had with it. If I had to do it again, I would get it again, and BTW I have had no trouble with swallowing post TX.
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: Jan 2009 Posts: 225 "OCF across the pond" Gold Member (200+ posts) | | "OCF across the pond" Gold Member (200+ posts)
Joined: Jan 2009 Posts: 225 | Atually you reminded me of something, the consultants did tell us that even with the tube, Martin had to attempt to sip water to keep the muscles working, otherwise like any other muscle the would shrink. He only kept the tube for 4 weeks, so didn't get a chance to get used to it I suppose. But did it help!
Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
| | | | | Joined: Apr 2009 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Apr 2009 Posts: 104 | So, WFC, did you ever get the tube?
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
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