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#19938 03-14-2006 03:51 PM
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Hello folks,
I've had SCC stage IV, found out last Aug.
I've had the once a day radiation, once a week chemo, and a modified radical neck.
I've been cancer free, (so far),since week 3 Dec. 05'.
I've had two epsophageal dilitations and still can't swallow.
I have a very tough, very supportive, wife and three small children.
I think if they told you honestly about the side effects of the tx, no one would consent.
So..... whats up with you guys.
Craig

#19939 03-14-2006 07:02 PM
Joined: May 2005
Posts: 497
"Above & Beyond" Member (300+ posts)
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Hi Craig. Sorry to see you here but if you have the "C" then its the best place around. I am glad your tests have been good to date. I have been clean now for 8 months. Taking it one day at a time. One day at a time.


[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
#19940 03-15-2006 04:36 AM
Joined: May 2003
Posts: 928
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Welcome Craig
My hubby also had a stage IV ( base of tongue).
Sure the treatment is rough, in fact its a nightmare but, boy the results are worth it!
We are 3 years out... he is going full steam ahead.... and life is great again.
By the way, do you have a PEG? We considered it a lifesaver when swallowing was an issue.
Nice to meet you , let us know if we can be of any help to you or your wife.

Marica


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
#19941 03-15-2006 08:43 PM
Joined: Feb 2004
Posts: 261
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Hi Craig! I am glad your here. I was told all of the consequences of treatment up front & found this site before treatment started. It scared the HELL out of me! I clearly remember asking the docs point blank, "What if I just don't treat it?". The surgeons charge nurse/assistant said, "You'll be dead in 6 months. The tumor will keep growing & close off your airway." I also have 3 children & a helluva wife & the decision from there was not that difficult. I am a little over 2 years out from that day, alive & living life very well. Your still early on in the healing process, be patient & fight like hell! Keep yer chin up! You can do this! Can you swallow anything at all? Keep trying & experiment with different foods for softness & slipperiness & combinations. I love a good steak, but it is still hard to swallow, so I will combine bites with bites of tomatoe for instance. Real butter lubes up everthing. Olive oil, etc. Wash everything down with milk, it was easier to manage than water at first. There are still certain foods I just won't bother with today, but I can eat just about anything I set my mind to now, but it has taken time & dtermination. Erik


dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
#19942 03-16-2006 02:53 AM
Joined: Jul 2005
Posts: 207
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Hi Craig,

It takes a while to heal. I was out of treatment 7 weeks before I could eat oatmeal. Can you at least take water? If you can manage some liquid, it is a start. I think it is a matter of retraining to be able to swallow again. I began with very soft foods. Oatmeal with banana. Lots of milk. Pudding, jello, icecream, shakes, etc. Now I am a year and 3 months out of treatment and eating everything except spicy food. My tongue cannotg handle yet.

good luck,

Steve Daib


SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
#19943 03-16-2006 06:44 AM
Joined: Feb 2004
Posts: 261
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Steve, I LOVE spicy food! The spicier the better. I think I over do it sometimes though. The other night my wife was outta town & I took my kids to this hole in the wall mexican restaurant for dinner. Excellent food! I tried a little habenero hot sauce on a couple of tortlla chips & think I actually burned the tip of my poor little tongue! Fresh tomatoe anything is a staple of my diet with most meals, salsa, extra tomatoe slices on burgers, chopped tomatoe & onion salad with alittle olive oil goes with everything & helps everything go down easier.


dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
#19944 03-16-2006 09:11 AM
Joined: Mar 2006
Posts: 27
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Hi Craig,

Sorry to see you in this forum, but you found the right place. My brother also diagnosed with the same SCC tongue, Stage IV and he just completed first round of Chemo and 5 more to go. He completed 4 radiations and 26 to go. This place is helping me a lot interms of support and suggestions.

I hope you will be back to normal before you know it. Keep fighting and be in good spirit all the time.

Praveen


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