| | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Jim,
No surprise there. I do not blame you for not wanting to be the first one for a surgery like that. I have learned a lot from you and your positive attitude. You will know when the time is right for you to have this surgery. I know that when you believe it is the right time, you will do it. Until then enjoy life and enjoy the summer.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I have a long time before I have to raise the white flag and wave it Donna. LOL That is unless I break an arm or something. Luv Ya Gal.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | I don'd blame you Jim..I wouldn't want to have a surgery that nobody else has had either. What is the reason they want to do the surgery?
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Well Suzanne, they want to do this so that they can put a feeding tube in. The way it is they can't. This in case my jawbone should snap or as the Dr put it, when it snaps. I eat nothing unless it can be made into a broth. He says it can happen even when I am talking LOL That is if you can call what I do talking. I can't even say my last name but have to spell it as well as many words. I must admit I think about this problem a lot. Thanks for asking . This 24/7 pain makes me more hardheaded. Percocet. methadone and Magic MW don't ease it much either so I'll go on fighting this and see what happens.
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: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2011 Posts: 571 | You, dear Jim, are a fighter without a doubt. I can't imagine anything that runs up against your will and spirit would stand a chance! You know what you want to do and when you want to do it. But, please make sure you are getting enough nutrition!
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I eat a lot of oatmeal with seedless raspberries in it, the same with real ripe strawberries, Pork or beef fat slow cooked all day with vadalia onions minced fine and put in BBQ sauce or Wostershire and eithe make runny mashed potatoes with a lot of butter and then make the beef broth into gravy. I have many things I make like that but take centrum silver too. Thanks for caring. I eat pasta too that is way overcooked with good sauce I make. Lots of spring water too and coffee black.
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: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2011 Posts: 571 | Good, I'm glad you are finding things with calories that stick with you. I hope your jaw holds...if there is something I know you will enjoy it would be proving your doctor wrong on this one! 
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | | Joined: Dec 2007 Posts: 57 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Dec 2007 Posts: 57 | Hello friend,
It's been a long time. Something made me get on today. I note in my email from a response to a post when I lost my brother and was feeling down. I often think of everyone here and have you all in my thoughts and prayers. I am not in a classroom this year. I have been "promoted" to the Lead Literacy Teacher. Fancy name huh? Miss my students. Wish they were infront of me so that way can have a prayer session for you but I promise to pray extra hard for you so that those angels keep you and your garden healthy and strong! Take care friend.
Brother diagnosed SCC August 2005, radiation and chemo- 2 rounds, total glossectomy Sept. 2007, passed away May 21, 2008
"Everyday is beautiful" he stated on a cold and foggy Chicago winter day.
| | | | | 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 | You keep kicking it Jim or you kno i will kick your ass.
love and ((((((HUGS))))) LIZ
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | WOW Cookey--- is that a promise? That might be the turn on I need !~!!!! 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
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