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mgmichael #97362 06-14-2009 08:12 PM
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This is too bad, I really liked the viscous lidocaine, the only drawback I saw that it only lasted for 15-30 min. I guess one needs to try this to see if it works. The magic mouthwash that I was given just burned like hell! Note these are made locally according to different formulation.

M


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.
Markus #97373 06-15-2009 05:20 AM
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I was one that seemed to have a bad reaction to anything. The worst part was I developed what I'll call a gag reflex towards the latter stages and anything I put in my mouth made me gag which usually led to tossing my cookies. The only way I could stop it was to swallow whatever it was that I needed to and the stand over the sink and close my eyes and hold my mouth shut until the urge went away. That did work quite often.


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.
mgmichael #97649 06-19-2009 02:19 AM
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I have had outstanding results with viscous lidocaine. Cannot take water or nutrition without it. (Am living 100% on Ensure equivalent, sipped via straw, alternating sips with water.)


Age 61, stg IV SCC (tonsillar, invasive at back of tongue, spread to neck lymph nodes); Dx Nov. 2008, nonsmoker since 1974, very light drinker, no other health issues; no surgery, no PEG, 4 cycles chemo (TPF), then weekly chemo + 7 weeks radiation (2 per day) incl IMRT = 70 doses total, done 6/4/09
ari #97650 06-19-2009 02:27 AM
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Add'l note: I squeeze a few ml of viscous lidocaine into about 1.5 oz water, shake thoroughly. One swish--held in mouth for maybe 20 sec--typically produces sufficient numbing. I swish more if I need to. For me, the stuff is a lifesaver. Btw, mixing and using lido is easy if you can find a 2-oz container and lid of the type used in many salad bars for dressing etc. when doing takeout.


Age 61, stg IV SCC (tonsillar, invasive at back of tongue, spread to neck lymph nodes); Dx Nov. 2008, nonsmoker since 1974, very light drinker, no other health issues; no surgery, no PEG, 4 cycles chemo (TPF), then weekly chemo + 7 weeks radiation (2 per day) incl IMRT = 70 doses total, done 6/4/09
ari #97662 06-19-2009 06:06 AM
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ari,

Get Carnation Instant Breakfast VHC as it has 560 calories in the same small can so by swallowing the same amount you get way more calories. You have to order it thru a pharmacy like Walgreens or CVS or perhaps Wal Mart but you don't need a prescript but make sure it's the VHC with 560 calories. You need perhaps 3000 cals a day to help your recovery.

Were you tested for HPV?


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.
davidcpa #97668 06-19-2009 07:42 AM
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David, thanks for the tip regarding Carnation Instant Breakfast VHC, 560 cal. I will follow up on that. I have been using CVS's house brand Ensure knockoff, "Essentials Plus", 350 cal, $7.49 per six-pack -- comes out to $1.25/serving.

Because it's so hard to intake any nutrition, I have been taking barely enough to maintain weight: in my case, 4 cans/day = 1400 calories, plus 1/2 gal water per day. That's about as much as I can choke down. It would obviously be a benefit if I could get more calories for the same effort.

Regarding HPV: Because my other risk factors are so low, my oncologist and radiation oncologist both strongly suspect HPV. However, no test was ordered because the result was deemed irrelevant to treatment decisions, therefore not cost-justified.


Age 61, stg IV SCC (tonsillar, invasive at back of tongue, spread to neck lymph nodes); Dx Nov. 2008, nonsmoker since 1974, very light drinker, no other health issues; no surgery, no PEG, 4 cycles chemo (TPF), then weekly chemo + 7 weeks radiation (2 per day) incl IMRT = 70 doses total, done 6/4/09
ari #97682 06-19-2009 12:59 PM
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ari,

I get tired of our doctors deciding what is or is not important to us, the patient. It may not have made a difference in your treatment but it definitely may make a difference in how you view your chances of a recurrence since studies have concluded that HPV+ SCC responds better to Tx and therefore has a better chance that it won't recur. This helped me mentally and as far as I am concerned the mental aspect of cancer is 50% of our battle.

On another front that I have and will continue to fight for is the more SCC patients that are tested for HPV, the better it will be understood and that can only be a good thing for both HPV+ and HPV- SCC patients. For all the untested patients that would have tested positive for HPV, they will be lumped into the HPV- pool and will taint that pool's conclusions which could never be a good thing for HPV- patients with the current understanding of the differences between the 2 types of SCC.

I fought Moffitt 3 years ago to get tested and I had hoped by now HPV testing would have become standard especially for those that fit the current mold for HPV, which according to your Signature Line, you do.


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.
davidcpa #97702 06-19-2009 07:31 PM
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I have watched my pharmiscist at rite aid mix MM and it sure does take awhile tomake the formula. 1st time he mixed it he had to call around different druggist to find out the trick to 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
EzJim #97707 06-19-2009 08:56 PM
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We spoke to our Medical Onoco and he said that the rinses for the mouth somethings make the muscus in the mouth much worse. He said that it's better to stick with the baking soda. Is this true or should be try some of the mouth wash discribed above?
Pat


Crgvr to Husband 55-yrs, surgery to remove cyst-diagnosed as SCC, 4/3/09 CT & Pet Scan showed more cancer in left lymph node and primary at the base of the tongue.TX Radiation 7 weeks 5 days a week last day is 6/25/09
Chemo completed 6/19/09
Peg Tube 5/22/09
Pat_451 #97749 06-20-2009 10:10 AM
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Kavi is no longer with us. I terminated his membership. He is neither a survivor or caregiver, qouted others inappropriately and posted non-relevant links. This IS a moderated site!


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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