| | 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 saw the ENT in Pittsburgh this morning. The CtScan shows my jaw is broken and is creating worry in my Dr. He wanted to admit me today but I told or rather asked him if it could wait until Monday. He said what he was telling me was hid Medical Opinion. I go Moday Morning to meet with a plastic surgeon and right after be admitted to the Hospital. They will begin anti-biotice as soon as I am admitted to fatten me up a little. The feeding tube will be inserted thru my nose. With this nose, he could inser a 4 inch water drain. LOL Then they will after a week or so besin the surgeries I need. They also have to figure out which bone is good enough to make a new jaw. The lowering of my stomache will take sometime around then so they can put the other feeding tube in. It might end up above my stomache. He said a minumm of 3 1/2 weeks but probably more like 2 or 3 months but could be longer still. I have been told a few times that God must be saving me for something special. Maybe it's to see how much an individual can tolerate. If that is the reason, then I am all for it. Have a great day all and keep smiling.
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: Apr 2011 Posts: 267 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Apr 2011 Posts: 267 | That's quite a long time in the hospital. I'm so glad you are getting this taken care of. I hope you feel 100 times better very soon. I'm sure your strong, positive attitude will help you heal faster than the doctor expects.
Last edited by msmac; 09-09-2011 12:21 PM.
Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | You'll kick the crap out of the whole situation and be out in record time....  sorry you have to go for more surgery!!! But if it's one stop shopping maybe you'll come out in better shape! Hugs!!! Give em hell!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Feb 2011 Posts: 117 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2011 Posts: 117 | Hi Jim: Wishing you much success with this additional surgery. You are one of the strongest people I have met on this site so I am sure you will kick the heck out of it.
DX 12/6/10 of T3 SCC Tongue.
Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear.
Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
| | | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2011 Posts: 571 | Oh, my Jim. My heart sunk when I saw the words "jaw is broken". You have been through more than anyone should be made to handle. And, you are tougher than anyone I know. Please know that you have an extended family, all of us here, who love you and care about you and will see you through your surgery and recovery. Please try to get lots of nutrition and put some weight on.
This whole thing must be weighing on your mind something awful. Please try to distract yourself with things you like to do. Remember to keep putting one foot in front of the other. Soon, you'll be looking back on all this stuff as just a bad memory.
Blowing a kiss and sending a hug from your California sunshine!
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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Well, I guess I am going to stop complaining about the mild pain I am in. Jim, you have been through so much. I will be diligently praying for you and your recovery. I am glad you went and got it checked out.
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: May 2011 Posts: 287 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2011 Posts: 287 | Not sure if we'll be able to see you on the forums this often now once you hit the operation theater. Get well soon, we all will be waiting to hear from you.
Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
| | | | | 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 | Wow that kid had a hard head!!! Im not surprised that your jaw is broken from what you had described. My poor poor buddy!!!! Im certain that you will be very busy getting all your things in order before you go on Monday.
I hope you will stop back onto the forum to check in. Jim....PLEASE!!!! have someone dependable make themselves an account here on OCF so they will keep us posted. DO NOT FORGET!!!!! Remember, I had my son join and he posted for me while I was stuck in the hospital. You may be there for a long time, dont leave your OCF family hanging not knowing if you are ok.
You and I have discussed this procedure many times. I know you dont want to go thru this but you will feel so much better when its all over. I know how afraid you are of all this, you can do it. After everything else you have gone thru this will be just a few more steps til you are well.
Make sure you tell those docs you want a possey muir valve for a trach. This way you will be able to talk. If you havent learned how to text message yet, get one of those grandkids to quick teach you. It probably will be easier to text than to talk for a while. Make sure you line up people to come stay with you while you are hospitalized. You need a team of advocates to be there to help ensure you are properly taken care of. My son would sit there for hours with me, even when I was kept asleep he sat there talking to me.
Keep your spirits up! Its not going to be easy but you can do this and finally be well. It really will be ok.
((((HUGS))))) and prayers to you my friend!!!!!
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 | Jim,
I have only been on this forum for a short time but have come to look forward to reading your posts: your courage and humanity blaze through the limits of the typed word. I want to second Christine's request to have a family member update us until you are connected again. It is a blessing to have family and friends to help; it is a blessing to them - especially the young people - to be able to help.
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.
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Jim:
You know that I will be right there with you in spirit, holding your hand and hugging you throughout all your surgeries and procedures, along with these wonderful forum members who so care for you. When you feel like it, use that laptop to send us a few words letting us know how you are. Prayers, prayers, and more prayers headed your way and will continue until you are back home and healing. We love you, and so admire you. It's someone like you who gives each of us the strength to conquer and survive.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: Apr 2011 Posts: 267 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Apr 2011 Posts: 267 | Thinking of you, Jim. Hope all goes well tomorrow.
Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Jim,
I love you. You're a hero of mine and one of, if not the, toughest people I know. I look at you as a father figure, someone I've looked to for an example on how to handle myself on this crazy journey.
I do hope that you have someone posting updates for you or have a way to communicate to us how everything is going. We worry because we love. I'm not sure why I worry, you're tougher then nails, I just hope they can get you patched up and get you out of pain.
You are on my mind and in my heart Jim.
Love you
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 | Jim,
As you are getting yourself ready for tomorrow, remember how many of us love you and are with you every step. I am going to miss your posts while you are in the hospital. You are a wonderful wise, courageous man with a great sense of humor. I am so glad you are getting the attention you need on your jaw. And I am hopeful that you can get relief from your pain, too. It's not easy to surrender yourself into the hospital and the health care team for what could be weeks. But you are doing the right thing. I'll be thinking about you lots and I send you my bestest hugs and healing thoughts.
Love,
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: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Everything Anita said, I second that!!!
You are a wonderful, thoughtful person, thinking of you!!!
Susan
Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!
*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker
LETS MAKE ORAL CANCER HISTORY!
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hey Jim, thinking of you - hoe you will have your comp. Available to you when you are feeling up to it... We'll miss you here! Best of luck with your surgery - I know you're tough and you'll get through it fine!!! hugs and heal well! Wil say prayers that your surgery goes super quick and healing even moreso!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | As usual, Eric took the words right out of my mouth  . julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Jim,
So sorry you are going through yet another major surgery. I sure hope and pray that this puts an end to the pain you have been going through and fixes all that needs fixing! You have the love, support and prayers of all your OCF angels and buddies! Please keep us posted and know we are there with you watching over you!
What hospital will you be in?
((((HUGS))))) and prayers to you my friend!!!!!
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Best wishes for your surgery Jim.
We will all be thinking of you and waiting to hear that all is OK with you.
Love and hugs from your angel Gabriele xoxox
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Oct 2008 Posts: 251 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2008 Posts: 251 | Jim,
Get it done and then come back to us... we need you!
My Strength to You,
Catherine
Catherine
2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Jim - I hope the surgery goes just the way it's supposed to and that your recovery happens in record time! Please do arrange for us to get updates so we know how you are doing. Love and prayers going your way.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Jim,
Tell those docs that you have an army of friends praying that they take good care of you. Best wishes and prayers for a speedy and COMPLETE recovery with no complications.
Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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