Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I love a good back n forth!!
I assume Dr Trotti was not including those that would have ended up PEG dependent anyway in his 30% but again that's just my assumption as I never thought to ask that defining question.
Dr Trotti never told me his numbers until just recently so they didn't weight in on my decision to get it or not and yes I do admit there were times that I could have and would have used it but the unknown is would I have had any problems swallowing post Tx or would I have become PEG dependent. All I can tell people is what experience I had PEG less. I leave the PEG experience up to the PEG people.
Yes I did go to the ER 3 times during and post Tx for fluids and I have since advocated new patients getting a port just in case.
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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