Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
Joined: Aug 2009
Posts: 10
Member
OP Offline
Member

Joined: Aug 2009
Posts: 10
hi i am the girlfriend of a cancer patient. My name is Denise, He is 42 and they say he is now terminal his name is David.The cancer 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. and put flap off cheek in floor of mouth. 10 more rad treatments. about 6 mo later it metasises in jaw and bone 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. now his head cannot lift to look up and it didn't work.They took out the metal jaw and they made a bar on the outside of face and this time they take a chest flap to cover hole . it didn't work either, it died. so they removed flap from shoulder, it 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. They said because cancer has spread in neck as a ct scan showed. Does ct scan show detail, are we sure it is all cancer ? I am unsure. They say he is not a candidate for surgery and now is 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 now.
we need options he has "share of cost medicaid".He will not get medicare until april of 2010. he does not have primary care dr does not have cancer dr has the malfacial surgent he 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?
I have read a lot of post,and to those of you that have lost loved ones and to those who have survived and those who are still tring to overcome this my heart and prayer go out to you.
I know I have been thru so much. I'm going to tell you a little about me. Back in sept 2004 my daughter was killed in a car crash. She was 29 and had 4 children it was on her oldest daughters birthday. she was 9 that day. My only other child, Melissa took Angie's children and is raising them along with her 3 children.7 children, Oh my god. Angies children did not get social securty because Angie got SSD before aquiring enough work time.Times are really tough now. The kids live around the corner. I am always doing the best i can to help. in oct 2005 my husband of 18 years died. he had HCV.then got lymphoma and developed cirrosis of the liver. he then developed lung cancer and his body could not handle rad treatments.Then a month later Nov 2005 my father passed away from brain cancer. I am now with my husband's younger brother. we have known each other for a long time and we fell in love each other .IN 2007 their mom passed away from lung cancer we helped take care of her in her last days. I belive she enjoyed her last days with us.Then last year Oct 2008 my little chihuahua, areeba, who i've had for 10 years gets hit by a car on road, and passes away. I am so sad.
I have health problems too, i have a pacemaker (AICD), diabetes, stint in heart, stint in leg ,Thyroid eradacated, neropathy, other things too. There family calls me the rock of there family . I do not want to lose another loved one. It doesn't seem right. If something isn't done soon david will die.
Love to all of you. You are in my prayers.
Thank You for listening to me, Denise

Top

Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
Maybe this is why I had rad seed implants put from under and thru my chin into my tongue. This is no fun either and I think much more then The Drs expected it to be on me. My tongue usually feels like the test board for strike it any where matches.


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 2009
Posts: 10
Member
OP Offline
Member

Joined: Aug 2009
Posts: 10
hi Jim, how are you? in the beginning during rad trearments the cancer Dr was going to do that and some reason changed mine. I wish they had of done that. maybe he might not be in this shape thank you for your reply. we are going to moffitt center next. Denise

Joined: Jul 2007
Posts: 211
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Jul 2007
Posts: 211
Denise,

You have been through so much. My thoughts and prayers are with you.

Sophie


Sophie T.

CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
Joined: Dec 2008
Posts: 1,004
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Dec 2008
Posts: 1,004
Denise,

Have you and David gone for a second opinion? I think you need to deal one issue at a time. First, David's health.

As far as everything you have been through...it's terrible. I can't imagine dealing with all of that, seems like too much for one person. Do you have anything that can help you with anything?


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
Joined: Aug 2009
Posts: 10
Member
OP Offline
Member

Joined: Aug 2009
Posts: 10
hi, david and I have been to shands jacksonville and now the moffitt center for his third opinion. they say the cancer has spread to far and now we are going to call hospice to get them involved. He's stillmoving around good has lots of pain.His neck is getting weak hard for him to hold up. They cancer breaks down your muscle and veins. We thought if we could someone to make a prostectic device to hold his head up. We've started taking a medcinail tea from billy rainwater We hope that is not to late. Thanks for listening Denise

Joined: Jul 2008
Posts: 101
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: Jul 2008
Posts: 101
Hi Denise,

My post is late, how are things now?

I haven't got much in the way of advice but just wanted to let you know I read your post and your story and am inspired by your fight.


FIL completed treatment 10/08. CG to father in Law in india who had SCC oral tongue T2N2M0. FIL underwent surgery, neck dissection, IMRT, and erbitux without losing weight or getting nauseated. Completed October 2008. SO far so good.
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
Denise, He has been thru a ton of pain and treatmenst. One great thing is that he has you by his side which is to me abiut 1/2 of his fight, Your encouragment and a boost here and there go a long way Keep him with the gloves on and in the ready mode. Good luck to you both and that includes a lot of pryaers too. JIM


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: Dec 2007
Posts: 138
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: Dec 2007
Posts: 138
[quote=areeba88]
I have health problems too, i have a pacemaker (AICD), diabetes, stint in heart, stint in leg ,Thyroid eradacated, neropathy, other things too. [/quote] Denise, I don't know your age but, based on your boyfriend's age, you seem quite young to be having all those types of health problems! I cannot even begin to imagine what you have been through with all these tragic events! You MUST be the rock of the family! Know that you and your boyfriend are in our thoughts and prayers. Hang in there and keep us posted.


Nine years out. New normal with limitations, but surviving and living life to the fullest.
Joined: Jan 2009
Posts: 225
"OCF across the pond"
Gold Member (200+ posts)
Offline
"OCF across the pond"
Gold Member (200+ posts)

Joined: Jan 2009
Posts: 225
hi Denise,
Just sending my prayers and thoughts.
Cecilia


Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
Page 1 of 2 1 2

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,264
EzJim 5,260
Brian Hill 4,918
Newest Members
wndamllrs27, lux, Richfiel, jelmrnets01, Matheo11
13,350 Registered Users
Forum Statistics
Forums23
Topics18,259
Posts197,166
Members13,350
Most Online1,788
Jan 23rd, 2025
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5