| 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 | Fluids given for rehydration ARE medication. Bags containing saline and dextrose administered intravenously to realign the balance of electrolytes ,blood sugar and potassium .Severe dehydration cannot be redressed by simply taking a couple of litres of water through a peg.
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: 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 | Sandy if you reread my post I said that the one thing I wish I had gotten was a Port which I could have used often because of my dehydration which was probably caused by me not getting a 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: May 2009 Posts: 132 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: May 2009 Posts: 132 | Thanks, everybody, for info on the PEG and Port, fluoride trays and Amisfotine (sp?). I will look into all of these as I begin radiation.
Went for a bike ride today for the first time since surgery - 20 easy miles. David, I, too, am an exercise nut (cyclist) - I can't wait to start pushing the big ring and going up some hills! All in good time...
Chrissy
Stage 2 SCC upper right palate Hemi-palatectomy and maxillectomy 5/28/09 Six teeth gone IMRT x30 starts July 13. Completed 8/26/09 Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
| | | | 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 | MM,
Hang in there. I had to stop driving my car during the worst part of Tx for about a moth and a half so that when I finally got back behind the wheel I felt kind of strange. You can't imagine how difficult it was to get back in the saddle after a 5 month layoff!! In Florida we can basically ride year round so I don't even own a stationary bike or belong to a health club. I rode probably 5 miles my first outing and I was still weak and had horrible dry mouth so I went out with a Camelback strapped on my back (first time ever) and had to suck water like every 5 seconds. It was horrible because how can one push a big gear and have to put a tube in his mouth every few seconds to survive? Fortunately this was short lived as I was soon riding without that sack and really having no dry mouth problems as long as someone didn't want to talk to me for very long.
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: May 2009 Posts: 132 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: May 2009 Posts: 132 | David,
I guess I need to be prepared for setbacks during Tx, huh? For the time being, I'll do my easy rides and hope for not too bad side effects when radiation starts. I can't imagine sucking water out of a camelback every few seconds...you'd have to leave it in your mouth the whole time! Today, the water just came out my nose when I drank from the bottle (palatectomy issue)...Oh, well. So, I'll get my camelback cleaned and ready.
Chrissy
Stage 2 SCC upper right palate Hemi-palatectomy and maxillectomy 5/28/09 Six teeth gone IMRT x30 starts July 13. Completed 8/26/09 Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | mighty.. it depends, I did all of my driving myself to and from. I never had to pull off the road 1 time. maybe I was just lucky or a tough old fart 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: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | MM plan for the worst and hope for the best. Try to not loose perspective, riding during rads really should not be on your must do list.
..re Amifostine, that really can make you miserable. (see posts here). I did not have it so I cannot comment directly.. except that my RO was dead set against it. It really can cause problems and it greatly depends WHAT you irradiate. You have 3 pairs of major saliva glands.
M
Last edited by Markus; 06-13-2009 11:26 PM.
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | Joined: Jan 2009 Posts: 253 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jan 2009 Posts: 253 | Chris Please investigate Amfostine (?) thoroughly. A friend on this list was given it in conjunction with radiation. He become very sick after the 3rd week, and the doctor discontinued it.
I believe that only a few people (maybe 30%) are able to tolerate for the whole treatment regimen. My doctor refused to give it to me.
Sandyst
Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0. Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09. OCF member/supporter
| | | | 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 | Chris,
I couldn't keep the damn thing in my mouth either as I had to keep my mouth open to suck large quantities of air.lol
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: May 2009 Posts: 132 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: May 2009 Posts: 132 | Thanks, everybody. I'll look into the Amifostine issue carefully. I have been doing some reading lately (some good, some scary) about drugs given with radiation. Looks like there's some effective new stuff out there. My surgeon at Dana-Farber, who I love, referred me to the radiation guy here in Hartford, so I'm hoping he's good.
The riding will remain second priority, but it sure is fun!
Chrissy
Stage 2 SCC upper right palate Hemi-palatectomy and maxillectomy 5/28/09 Six teeth gone IMRT x30 starts July 13. Completed 8/26/09 Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
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