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EzJim #101333 08-12-2009 08:08 AM
Joined: Jan 2008
Posts: 26
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Christine,

I wish there was something profound I could say that would help, but since I can't, please know that you are in my thoughts and prayers. You are such a strong and compassionate woman and those traits will help you persevere through surgery and recovery. Thinking of you and wishing you peace and comfort.

Kim


08/24/07 Dx at age 44 never smoker, occasional drink
T1N0M0 G2
09/06/07 partial glossectomy(rt),neck disection (rt) 32 nodes clear
12/05/07 35 RTx w/boost, 63 GY, finished
12/28/09 PET/CT all clear!!
12/19/11 check-up, all clear - 4 years cancer-free now !!
KimK #101383 08-12-2009 06:14 PM
Joined: Mar 2009
Posts: 109
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Posts: 109
Thinking about you, Christine.


38 yo@dx, female, non-smoker, non-drinker, SCC right lateral tongue. T2N2aMx stage IVa; 1/20/09 bilateral neck dissection, hemiglossectomy, micromets in 2 right nodes, left all clear. 33xIMRT + 3 cisplatins. Tx completed 5/08/09. PET scan 7/29/09 clear, 5/26/10 clear, chest x-ray 5/23/11 clear
Jenka #101404 08-12-2009 09:53 PM
Joined: Feb 2007
Posts: 1,940
"OCF across the pond"
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Posts: 1,940
Hi Christine
i was just browsing through your first posts and wondering why and how i didn't seem to have posted on many of your threads.Then i saw the date and realised that i was at hospice with Rob and very much tied up with myself!!!Despite all you have been through and are going through you have always taken the time to leave words of support for everyone else and thats an admirable quality.I smiled a little reading some of the replies to your questions by Petey B and Brenfran and am amzed at how little (like me) you knew two years ago compared to the wealth of knowledge we have now after living with Oral Cancer and its gifts.

I send you every good wish i can muster from across the pond sweetiie.

love and hugs liz


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
Cookey #101414 08-13-2009 04:25 AM
Joined: Jun 2007
Posts: 10,507
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Liz, we have corresponded many times indirectly. I have read so many of your wonderful posts. The best is seeing your beautiful pictures on facebook, thats the happy stuff I love to see. Yes, Petey, Amy, Brenda, and Margaret were my first friends here. OC is one topic I dont like knowing things about. Overall this site has allowed me to absorb an abundance of info and be able to pass it on to others behind me.

Today is the date with my plastic surgeon. He will probably think I am crazy but Im going to ask him a million questions. Even about a little tummy tuck while he is taking skin from my belly. He will be my miracle man that I need to make me beautiful smile


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
ChristineB #101416 08-13-2009 04:31 AM
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Posts: 5,260
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Christine, you will always be beautiful with or without the Drs.


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 #101427 08-13-2009 08:39 AM
Joined: Aug 2009
Posts: 90
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Posts: 90
Christine, good luck with your appt today with the plastic surgeon


caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
nancys2 #101430 08-13-2009 08:54 AM
Joined: Feb 2009
Posts: 88
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Good luck and I am thinking of you today and hope your appointment goes well. You are so positive for everyone else we need to all band together our positive energies for you and what you are heading into. God bless.

Bonnie


CG to daughter Brandy age 31 initial dx 10/06
SCC T4N0M0 with bone invasion upper maxillary
Surgery 10/06
CT's clear for 2 years

2nd recurrence - Laser surgery 1/09 dx
Tumor board - No surgery to invasive for QOL
35 IMRT 3/30/09 Completed 5/15/09
8 tx Erbitux 3/24/09 Completed 5/6/09
Bonniey #101661 08-17-2009 04:48 AM
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An update about the plastic surgeon consult, and more....

He was very detail oriented which I like. Told me my operation was a big one, which I knew. It would be 6-8 hours for his part of it, my ENT is also another 6-8 hrs. Some of their time will overlap as will the PEG and trach placement.

He will take skin not from my stomach area, but from my inner arm. Its going to be like the picture Charm posted on the review site. There is a high probability that this will not take and he will need to redo it within 24 hrs. He will be working with thread the size of a hair connecting blood vessels under a microscope.

Swelling will last for 3-4 months. He said it should heal in about 8 weeks. I will come home from the hospital about 10 days after the operation with my accessories. The trach and PEG will be around for a while.

How I hate that PEG tube, only people who have used one know the discomfort and the amount of energy it takes to use one. Everything in your day revolves around the darn tube. Its a very unwelcome accessory.

Tomorrow is my consult with the gastro doc and the pre admission testing. It will be a long day, a million questions, bloodwork, chest xray, anistesia guy. He will run around and get his supervisor to look at me since I have trsimus and say that they cant do my operation. Same story everytime by those guys.

There still are a million questions I need to ask. I keep forgetting to ask if I will need HBO again to heal. Cant wait to find out how in the world Im going to take a shower with a huge hunk out of my jaw area. I dont even want to hear the word bedpan while Im in the hospital. I have more willpower than any nurse out there, I will use the bathroom and be clean. Even if I cant talk, they will get the message smile

How I want to fast forward this event and be on the recovery side. Im not good at bouncing back and Im scared when I think too much about this. Ive become very clinical, I can discuss medical terms and all that goes along with this objectively. When I think about this being done to me thats when I get scared. Just knowing I will have no control over anything in my life for at least a week scares me to death. That I must rely on others for everything and cant speak up just kills me. I am not brave at all, Im terrifyed. I remove myself from the picture to be able to deal with this. I cant even say Ive been thru worse, thats what always got me thru everything else.

This is my last Monday as I know it, time to make the most of it. Im going to do some positive things today. Make some financial arrangments and try to eat everything I can possible eat. Ive lost 6 pounds and need to be on a weight gain regime. Back to my chocolate peanutbutter shakes with carnation instant breakfast powder, had one last night.

Hope everone out there makes the most of the hand they are dealt and has a great day!!!!


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
ChristineB #101664 08-17-2009 05:09 AM
Joined: Jun 2007
Posts: 5,260
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Geez Christine, I wish I had words to comfort you and this situation, but as usual, I am not that wise. I have you on the top of my prayer list as always and I will be there by your side in spirit. I can understand the being scared part and worried about different things. I remember when I came out of the induced coma, they had a giant sizewd diaper on me That was a big upset to my system just thinking about it and as soon as I could move. I had to shower with or without consent. I have been thinking about you for the last few days and wishing I could be there to talk to you and maybe get a smile from some of my BS.Enjoy the shakes and whatever you can get down. 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
EzJim #101665 08-17-2009 05:57 AM
Joined: Jan 2009
Posts: 476
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Joined: Jan 2009
Posts: 476
Christine, I'm so sorry that you have to go through all of this. I wish there was something I could say to help with your fears and anxiety. I can't imagine all you have to go through and anyone would be scared to death. John and I will be leaving Friday for our cruise but I will be thinking of you and praying for you and your surgeons. You have such a HUGE support system here and so many people in your corner. Sending you a HUGE hug. Wanda


Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
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