| | Joined: Jan 2010 Posts: 2 Member | OP  Member
Joined: Jan 2010 Posts: 2 | Hi, I just found this website and am quite excited about it. My hubby was diagnosed back in 2005 and has gone through so much since then. at least 30 surgeries to try to correct the damage that the radiation did to his jaw/neck area. The radiation killed everything so when ever he had surgery the incision would not heal, it would open up, he would have fistulas constantly. It was surgery after surgery just to fix the incisions that would not heal. The last one he had was about 1 1/2 years ago which took 16 1/2 hours. he was in the hospital for 31 days in intensive care, got pneumonia pretty bad, staff infection so bad he was on antibiotics for 1 year but his face stayed together after this one. He is permenantly on a feeding tube and is permanently disabled. This is going to be so good for me because I have not meet anyone who has gone through this type of cancer. Already some of the stuff I have read tells me "There are others". I look forward to participating in this website. | | | | | 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 | Pat,
So sorry you both have had to deal with so much post TX. Certainly Tx is bad enough! I know my wife has been after me to have my turkey chin "fixed" but I have hesitated just for the same reasons you describe.
It would help everyone greatly if you could go to your Profile and then to your Signature line and add some history like I have in mine so that everyone can relate to any comment you may make.
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: Nov 2009 Posts: 396 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 396 | Pat,
so sorry to hear about all of the things yall went thru but welcome to the site.
u will find a great deal of support and comfort here.
i hope this last surgery was his final one.
Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Pat
So sorry you and your husband have reason to join our little club. I know what a hassle it is to be on a feeding tube permanently. Not many of us have to have a PEG for life, but it does beat dying. This is a great group and I'm glad you found us. Feel free to vent here, we understand.
I recommend you read our Coping/Anger & Fear forum - especially our "Don't you just hate it" thread (Over 13,000 views suggest it is worth wading thru the 22 pages of posts) - you will recognize that indeed "there are others"
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 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | As much as I hate to say this,, welcome to our home. It's a shame what some go thru .. As for my turkey neck, hell that is our trade mark.LOL I'll keep mine as a badge of Honor.
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 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Pat,
Welcome to our small community. Like your husband I too had complications with my surgeries and have become disabled...or as i like to put it, minorly inconvenienced.
I just had my PEG tube taken out however may need to have it reinserted here shortly as my nutrition is not where it needs to be and taking in anything orally is difficult.
I hope you find this site helpful, I know I've made friendships here and have found people I relate too...and wonderful support.
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.
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