| | 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 | Thanks all. I am taking it just a little easier but thinking about this jaw bone that can break at anytime and either side. I have to make sure to tell them before they put me out to not bother my mouth by probing around with the mask and things. I am having the surgery at Allegheny General in Pittsburgh , which is the same Hospital I went to in Jan 2009 for the anneurysm surgewry. The 1st time was in 1996 in Wheeling by a very good surgeon. This was supposed to be done in Jan of this year.
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: 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 | Jim, glad you finally have the surgery set up. Now just take care of yourself before this!!! Slow down and get rest, bulk up as much as you are able to. Drink ensure or Carnation VHC to put some weight on and increase your protein intake to help you heal better. One of my pals here sugested a hi protein powder that I add to my feeding formula. It can also be mixed with any type of liquid, it dissolves easily and has 25 grams of protein per scoop. I get it thru the OCF Amazon link. Its something worth a try. http://www.amazon.com/gp/product/B000GE0D8O/ref=oss_productWhen you have the pre admission testing, tell them about any mouth problems you have. Make sure you stress the fact that you are not a regular person and care must be taken with your mouth. They will use a breathing tube. If you have any throat issues, make sure you speak up during this testing.
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: Feb 2010 Posts: 38 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Feb 2010 Posts: 38 | Hi Jim,
Although I have only been around this site for the past 10 months, you are always one who tells others to 'hang in there' and 'be strong' or let folks know that you are thinking of them.
I hope for you, all of the good thoughts and positive strength that you have shared with them, so that your spirits are lifted and that your burden is lightened.
Hang in there, be strong, and I will be thinking of you during this new chapter of your fight!
Bee-Boppin' Barb
Teacher aged 48, SCC Left side and floor of Tongue, Dx December, 2009. Stage II T2 N0 M0 Successful partial glossectomy surgery with thigh flap and neck dissection 3/8/10. 6 weeks of radiation tx ended 6/30/10. Happily surviving!
"Get outside every day. Miracles are waiting everywhere."
| | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Jim,
My father died from a AAA. I get checked every few years for one as these things are genetic. They tell me these things are very treatable when you get in front of them as you are doing.
I know your strength and wonderful attitude will carry you though with flying colors.
Keep the faith buddy!
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
| | | | | 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 |
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Thanks all for the boost. I do drink the ensure Christine as you told me to before. I am having problems with my Big Mouth hurting tho. The left jaw was a little bloody this morning, but I will be easting, not with a smile but a grimace. LOL The left side was bloody and the right just hurts like an elephant standing on private areas. LOL I'm all the way back up to 142 lbs. I have to tell this story. I was getting an oil change where my son works and a guy standing beside me asked Ryan how I was doing now. LOL Ryan told him , " my dad is standing beside you so ask him". That was funny. He didn't recognise me because they all tremember when I was big and strong and I remember him with hair. LOL We both had a good laugh and a lot of talk after.Over 55 years of friendship.
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 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Hey JIm, you are one strong man, and I know you will get to November. Do take it easy. I will keep you in my prayers.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Jim
You have a lot on your plate brother. Of course I wish you well and await a glowing report in November. As a diversion in the meantime, I used a Body Mass Index calculator to find out that 142 lbs is technically within the "normal" weight range for a man up to six foot one and half inches tall. Just trivia. You are still a heavyweight in my book though.
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
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