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| | Joined: Sep 2009 Posts: 60 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Sep 2009 Posts: 60 | Hi folks I have been away a while. My treatments ended in June 2009.
I have done quite well, so I would like to offer a word that this can come out well. I still have limited motion in opening my mouth. No double deckers any more. Saliva is low, but there. I cannot eat without a drink to go with it. As far as taste, sweets are still not there. I rock candy, all I could taste was the food coloring. I discovered recently that stevia actually tastes like it is sweet. I use it a lot now in tea.
The thing that is happening now is that I have started getting cramps in my neck muscles. My doctor thinks it is not a concern. I guess it is scar tissue as it is just on the side where I had radiation.
Flip
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Age: 54 SCC Tonsil + 3 nodes
Radiation and Carboplatin
Treatment 4/1 - 6/7/2009
No surgery, no PEG
Never smoked
Drink socially (brew my own beer and love wine. A bottle of scotch lasts me a couple of years)
CT 11/4/09 No sign of envolvement in Tonsil or nodes
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Flip, always happy to see a patient come back with good news. Congrats on your recovery and doing so well. Best wishes for many happy, healthy years ahead 
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Hi, Flip
A friend of mine is about seven years out and also has neck cramps. He is pretty careful with his electrolyte balance. His doctors are not concerned, either (of course, its not them have the annoying cramps!).
Regarding stevia - I googled 'stevia candy' and got a lot of results. Everything from gummi bears to chocolate. Maybe you can find something tasty to have with your tea!
Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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