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#101149 08-09-2009 08:32 AM
Joined: Aug 2009
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Joined: Aug 2009
Posts: 10
hi MY name is Denise and i am the girlfriend of David a cancer patient. he is 42 and they say he is now terminal.It started as a small sore under his tongue 2007.They removed his teeth then he had 27 rad treatments and the cancer came back under his tongue.so they did radical neck disection removed jugular on rt side and some lymps on both sides. and put flap off cheek in floor of mouth. 10 more rad treatments. about 6 mo later it metasises in jawbone they take his jaw out and put metal jaw in and took a flap from chest to cover,the flap failed. then they tried to streach skin to cover hole it kept coming apart.he had to walk around with head held down to try to help flap take. It didn't work.and took out the metal jaw and they made a bar on the outside of face so this time they take a chest flap to cover hole . it didn't work either, it died. so they removed flap from shoulder wasn,t working and they had to put back on shoulder. now the dr tries to lift skin from the bottom of neck to cover hole underneath chin and used skin graft from leg to cover his chest. it did not stay together either.went to see vascular dr at shands jacksonville said because cancer has spread in neck as a ct scan showed that he is not a candidate for surgery and is now terminal. he also has infection in neck and alot of swelling that keeps going up and down can these cause false images? he is on steroids and bendryl for swelling it helps, also on antibiotics.he takes alot of pain meds still not out of pain. cannot sleep at night has g tube he's on jevity. i am his only care taker i change his bandages 3 or 4 times aday. the neck hole seems to be deeper. we need options he has share of cost medicaid. can not get medicare until april of 2010. he does not have primary care dr does not have cancer dr has the malfacial surgent who tried to save his life out of the goodness of his heart. we are looking at getting kemo now, if we can find dr . i keep looking for alternatives.maybe if i keep the area clean and moist and the kemo shrinks the cancer they can reconstruct his face so he can have a good quality of life. I feel so bad for all he and i are going thru. and i love him very much i don,t want to lose him, he is too young. isn,t there something that we can do?

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Top....I have no advice, but I want you to know that we on this forum will hold you and your boyfriend in our hearts as you face this difficult journey. Maybe that will help you to feel less alone. You will get other answers....and maybe some with useful information. I have never heard of such a difficult time, and so many failed surgeries. You both must be exhausted! fI'm glad you reached out to the good folks on this forum.

XO--Colleen


Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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Thank you Coleen, yes , I was already told of moffitt and i called them so we are seeing them on the 20th about chemo or maybe they can offer some other treatment.Thank everybody, Denise

Joined: Jun 2007
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Denise, thinking of you both today. Hoping there is some good news with the appointment at Moffitt.


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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