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#132065 03-26-2011 11:12 PM
Joined: Mar 2011
Posts: 2
LuvMyRy Offline OP
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Joined: Mar 2011
Posts: 2
Hi, I'm new to the forum but had been reading it for a while and had been using the OCF website for info as well. I am the Partner/Girlfriend/Best Friend/Caregiver to my boyfreind of 4 years.
We were conviced, and so were his doctors, that he had been "cured" with the first round of treatments which were aggressive and extensive. Now his doctors seem to have written him off as a lost cause and I am pissed. We are looking for trials, anything, to save his life but we are starting to not lose hope exactly, but gain some perspective and accept that he may die from this thing. It's not fair. He was the healthiest, health nut I had ever met (never drank alcohol or caffeine, never smoked or got high), he loves life and lives it so well. It just drives me crazy that he has to go through this.


Nis CG to Ry (37) Dx Aug 2010 p16(+)T4aN1 postlateral tongue-retromolar trigone-tonsillar fossa well differentiated SCC, reconstructed with free flap and post operative chemoradiation (cisplatin 3x). Recurrence Dx Feb 2011 tx Taxotere and Erbitux.
LuvMyRy #132069 03-27-2011 04:38 AM
Joined: Aug 2010
Posts: 75
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Joined: Aug 2010
Posts: 75
I feel for you and hate to see yet another suffering--there are too many! This forum is a great resource. My husband is participating in this Clinical Trial http://www.clinicaltrials.gov/ct2/show/NCT01081041?term=LY2939777&rank=1. I know how hard it is to watch someone you love go through this. Stay strong and take care.


CG to sp age 53
4/10 BOT IVb
6/10 Ttl Gloss Lrngectmy L Mndbltmy 5+ Nodes
7/10 Cispl & Rad
1/11 recur lung mets
2/11 Clin Tr Erb Carb 5FU last 5/11
7/11 Tumor growth began wkly Bleo, Taxol, Carbo
10/28/11 Hospice; Passed 11/7/11
Gerri #132082 03-27-2011 09:52 AM
Joined: Jul 2009
Posts: 1,406
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All I can offer is support and good thoughts and a virtual hug. I really hope you can find a trial that will help. It sounds as though you both have a great deal of inner strength.

david2


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
David2 #132087 03-27-2011 10:27 AM
Joined: Feb 2005
Posts: 118
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I am a proponent of clinical trials and I do hope that you will locate one that will offer Ry extended quality of life. My experience with clinical trials began in 2005 with my initial diagnosis and I am now participating in my third trial. In fact, Erbitux was my clinical trial drug in 2005. If you have not done so, check www.clinicaltrials.gov for a comprehensive list. Hope and acceptance as a mantra guide me daily. Continue on your path of mutual support and courage.


Be well. Zenda
12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.
ZendaT #132150 03-28-2011 05:08 PM
Joined: Jun 2007
Posts: 5,260
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Why is it yur Drs are writing him off? Did they do more biopsirs and find OC again? I can't find out from your post as it says nothing.


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
EzJim #132174 03-29-2011 06:10 AM
Joined: Jun 2007
Posts: 10,507
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Welcome to OCF! Hope we can help you. What about taking him to a cancer center for another opinion? Has he had a biopsy with a confirmed recurrence?

http://www.oralcancerfoundation.org/resources/cancer_centers.htm


Christine
SCC 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 smile

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