| | Joined: Jan 2008 Posts: 82 Senior Member (75+ posts) |  Senior Member (75+ posts)
Joined: Jan 2008 Posts: 82 | You guys are a hoot! If my PEG's comin' out Tuesday I'd better get to work on the experiment... maybe some Crown Royal after a couple of Stouts, eh?!
John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
"We're all in the same boat in a stormy sea, therefore we owe one another a terrible loyalty."
| | | | | 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 | Question? Is it really drinking alcohol if you pour down your Peg?
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: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | It's been so many years since I had a drink,, one would make me even more simple. LOL
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: Nov 2006 Posts: 166 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Nov 2006 Posts: 166 | At 6 months my taste is still messed up. I thought I was turning the corner on New Years when the wife fixed a baked ham. That was the first thing that tasted as it should each bite and did I tear into it. But since then, it is as stated above, after a couple of bites everything goes bland. But when I do taste something that is right I enjoy it so. The wife thinks I'm crazy but I just smile and keep eating. 
Bill B. Dx 10-16-06 Stage 4 T2N2bM0 SCC Left Tonsil,3 nodes. 1st tx 11-28-06, last tx 1-8-07. 3x Cisplatlin, 5fu pump, and Doxetaxel. Modified neck dissection,20 Nodes removed, all clear 02-21-07. HPV+,33 IMRT start 3-22-07 70GY,Completed 05-04-07 | | | | | Joined: Jul 2007 Posts: 30 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jul 2007 Posts: 30 | Hello again,
Story for you: I work at a Nuclear Plant. After my 3 month check-up that included a PET scan I knew I would probably set off the rad alarms when I left work. I also knew I should have filled out the paperwork and informed security and others but hey I had chemo brain that day and forgot. Well as I was leaving work that first day after I got within 15 feet of the monitor and yup, it sure did go off. Armed security officers came a running. After some explaining and 15 minutes of paperwork and a call to my oncologist they did let me go home.
I appreciate hearing that I may get more/better taste back and the dry mouth may get even better. Dave, I remember back when I was struggling you told me that at first it would get better faster than slow way down. And you were right, it really seems I have plateaued and not getting any better but over time there is small improvements. It is hard not to get impatient. Although I had a PEG tube I forced myself to eat a little each and every day (Daves good advice again) and I think that really helped. One thing that tasted ok through the whole ordeal was Grape Nut Flakes breakfast cereal! And my wife's homemade chicken soup.
Bruce
Bruce
Age 57 SCC Stage3 BOT and 1 node PEG 35RADS
7CHEMOS Tx over 9-17-07 tube out 10-12-07 back to work 10-15-07.
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | what a good husband you are
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Jan 2008 Posts: 82 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Jan 2008 Posts: 82 | Hey Jim and Dave, let's get Bill and Bruce to come along and we can eat and drink some... Bruce can bring the cereal, Bill can bring the ham, Jim you bring the blend, and Dave... the reasoning. Me? I just wanna have some fun! We gotta get crazy once in a while, otherwise we miss out on all the good times!
John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
"We're all in the same boat in a stormy sea, therefore we owe one another a terrible loyalty."
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | John,, that sounds like a plan to me.. I'm sure we would have a great day full of laughs , fun and enjoyment in general. Might even end up being questioned mby the law. LOL Lets go for 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: Jul 2007 Posts: 30 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jul 2007 Posts: 30 | Hey Guys sounds good, I haven't had beer on cereal since homecoming in college at the frat house in 1970! Why don't you all head up here, I could use the help shoveling my driveway. John, I also had teeth pulled, 5 actually, and ended up with dry socket in two of them. Snowing again today here.
Later,
Bruce
Age 57 SCC Stage3 BOT and 1 node PEG 35RADS
7CHEMOS Tx over 9-17-07 tube out 10-12-07 back to work 10-15-07.
| | | | | 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 | Well if we're gonna party then plan on doing it my City cause being the reasonable one I ain't going to Green Bay this time of year. Remember I think 60 degrees is getting to cold for comfort.
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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