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#26395 05-09-2004 01:46 PM
Joined: Sep 2003
Posts: 139
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Joined: Sep 2003
Posts: 139
Scream away, Helen. If I can't hear it in Vegas, then you aren't being loud enough!
God bless............prayers headed your way!
Judy U


Judy U
Stage I SCC floor of mouth, left radical neck dissection 8/03
#26396 05-09-2004 11:22 PM
Joined: Apr 2004
Posts: 143
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Joined: Apr 2004
Posts: 143
Helen, I`m going to use my daughter`s favorite saying "Trust the Universe, Things Will Work Out" I`ve been hearing this on a regular basis for the past two months, and so far so good..........Love and Hug...........W.W.N.

#26397 05-10-2004 04:05 AM
Joined: Dec 2003
Posts: 2,606
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Patient Advocate (old timer, 2000 posts)
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Joined: Dec 2003
Posts: 2,606
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Helen,

I hope I don't sound too trite or patronizing but my heart goes out to you. I wish I could come over there myself and help you.

My grandfather was the branch manager in London for the Mainichi News, the largest paper in Japan just before the war. I saw a picture of Sir Winston Churchill holding my uncle as a baby in his arms by a fountain that I believe was in front or down the street from Westminster Abby. Because of his friendship with Churchill, he had to return to Japan when the war started and eventually died in the Phillipines just after the war ended.

Maybe I need a trip over there to seek my roots and help a friend. How long is the flight?

Ed cool


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
#26398 05-10-2004 07:19 AM
Joined: Sep 2003
Posts: 1,244
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Patient Advocate (1000+ posts)

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Posts: 1,244
Well Ed and everyone... WOW
Thanks for all your great support and also for the offers of help.. helps to know that what ever happens you guys are out there.. Dee, Ed and several others are looking for an excuse to visit the UK.. lets have the reunion in London... perhaps the flights cost are cheaper U.S. to U.K. from here more like telephone numbers than flight costs... still while I'm laid up NO RED WINE so I should be able to fly 1st class :rolleyes:
love and hugs to you all
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
#26399 05-10-2004 01:10 PM
Joined: May 2004
Posts: 10
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Joined: May 2004
Posts: 10
Higuys, feel like youre an extended part of my family...Thanks Dan, cant wait to get the invite, looking forward to meeting everybody. I just found out something very interesting. In one of my earlier posts I had said I have had quite a number of tumors biopsied, and well thank God so far all benign. One of my doctors thinks I May have Cowdens Syndrome. I had never heard of it so ofcourse I ran to the internet (damn near tripped LOL) to look it up. I have also commented about my bloodwork, and asked if there was any connection between all the tumors and was told NO...Well apparently there is... The only bad thing is with this Syndrome you have about a 20%-50% chance of getting breast cancer within your lifetime, about a 10% of thyroid cancer and about 5% chance of endometrial/colon cancer. How much does this Stink... The good news is-Im alive and well and plan to stay that way... I Dont mean to preach, so please dont anybody take what Im about to say that way OK? I have never been the Go to church type of person, but I have always given my heart and soul to God, I guess over the years I lost faith because of all the bad things that had gone on in my life, but I must say, I had a lil one on one with The Big Guy and I feel awesome, its as though all of my fear has left my body. I know I will be fine, and live a long and happy and healthy life. I will just be more diligent in my doctors apts. Sorry if I went on and got a lil off the subject, but thought it was something interesting that came my way and that I would share. Who knows maybe some of you, also have had other tumors and werent aware that you may have a mutated gene Pten... One never knows... Hopefully will chat soon. Everybody have a wonderful night and stay healthy...

#26400 05-10-2004 11:10 PM
Joined: Sep 2003
Posts: 1,244
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Hi Maria
Try to forget the statistics, you can read them both ways.. that means you have a 80% chance of not getting anything.. s### though.. you don't need anything else.. I have Lupus as well and I jump from one symptom to another.. does my head in
take care..
love and hugs
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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