| | 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, the ENT wants me to go to either the Cleveland Clinic or UPMC in Pittsburgh for them to check out my jaw on both sides where the bone is dead and it is spreading. He thinks they, with new procedures, might be able to take just the dead bone out and rebuild that part of my jaw on both sides. He noticed my weight loss and mentioned a feeding tube but as usual with 1/3 of my stomache being wrapped around my Esophagus, I would need to have my stomache opened up and redo things in there for the tube. Damn, life is so much fun at times. LOL I will let him make the appointment with Cleveland or UPMC about going for just the dead bone replacement, but might hesitate on the tube surgery. I guess we learn to walk one step at a time before we can run. I also had a message about the Anneurysm catScan and talked to the Drs nurse and she is setting up the Scan so the Dr knows just what is going on there. I often wonder what it would be like to have the everyday type of surgery. LOL If there is such a thing.
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: Aug 2008 Posts: 238 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | Hey Jim! Haven't been on here in awhile so am catching up. I don't think there's such a thing as "everyday type" of surgery anymore. However, I think it's wonderful that they are coming out with newer and better procedures so I'm hopeful that the one your ENT is thinking of works out great for you. As always, I love the sense of humor you always maintain - it's contagious!!! One of your angels must be a comedian. Hang in there and take care.
Nancy T
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
| | | | | Joined: Aug 2008 Posts: 238 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | Hey Jim! Haven't been on here in awhile so am catching up. I don't think there's such a thing as "everyday type" of surgery anymore. However, I think it's wonderful that they are coming out with newer and better procedures so I'm hopeful that the one your ENT is thinking of works out great for you. As always, I love the sense of humor you always maintain - it's contagious!!! One of your angels must be a comedian. Hang in there and take care.
Nancy T
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
| | | | | 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 | Nancy, I see a Birthday Cake by your name and must say Happy Birthday to you. I won't ask how many for fear of you injuring me. LOL Thanks for the boost and I agree that at least one of my angels has a happy Halo to guide me.
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: Feb 2010 Posts: 235 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Feb 2010 Posts: 235 | Jim, I have a feeling wherever you choose to go for your next step(and one step at a time sounds good...) your doctors and nurses will absolutely be charmed by you. Your posts really do get a smile out of me,no matter my mood. Keep us posted on what you will be doing next and when...
CG to Spouse BOT, Chemo and radiation started on March 29,2010
Ended on May 14,2010. LET THE HEALING BEGIN!!!
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 5 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: 5 | Jim, this is a difficult operation to go thru. Unfortunately if you have the jaw surgery, you will have to have the feeding tube and maybe a trach too. You would not be able to eat for some time with this type of operation. Hope the docs are able to pull off some kind of miracle to avoid all this surgery. Wishing you all the best!!!!
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Jesus Jim...you are the toughest guy I know my friend. You keep getting dealt a shitty hand and your attitude never misses a beat.
Hang in there buddy!
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Hi, Jim,
Your news is encouraging...that the ENT believes there is a solution for you is great! I sure hope that this gives you the relief you want. I wish you the best as you move forward.
Anita
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | 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
If anyone can pull this off, it will be you. I can understand your concern about stomach surgery over and above regular PEG placement. Is getting a combination J tube and G tube (as I believe Christine has) an alternative possibility. I just have the plain old "G" tube which goes directly into my stomach - it just not a PEG because it's not inserted with an endoscope (the E in PEG). A J tube though goes to the small intestine . They are both feeding tubes. Christine would know the ins and outs of a J tube about which I am clueless except for knowing it's name and destination [ from jejunostomy or into the intestine (jejunum = part of the intestine]. Can't hurt to ask your doctor
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
| | | | | Joined: Jun 2009 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2009 Posts: 71 | Jim,
Sorry to hear about the bone necros. I think the Pittsburgh hospital is the one doing the ECM experiments. Extra Cellular Matrix. I saw this on 60 minutes. It appears that new tissue can be grown around an artificial structure to replace and replicate the original tissue. They profiled a nice man with a new esophagus. He was all smiles. I'm not sure if bone is possible with this stuff but it might be worth asking the ENT about. Good luck to you on this journey.
11/1999 SCC tongue - surgery
1/2000 Met(s) in lymph nodes - modRND
2/2000-4/2000 RT ~6 weeks
end of 2006 SCC tongue - surgery
1/2008 SCC BOT - surgery / PEG installed
2/2008 chemo & RT
4/2008 last time I consumed solid food by mouth
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