#3769 09-22-2004 08:11 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | On my last visit I literally begged the doctor to give me a chest xray and a PET scan although my one year post treatment date is actually October 8. (I guess I let my kids open their presents on Christmas Eve, too...but only 1!) The radiologist had major surgery right after my xray and was out until after Labor Day and everyone else booked out for the holiday. Eight days later, xray came back find with mild apical pleuresy whatever that is. I had the PET scan a week later because the faxed orders were lost and finally re-faxed after the place was booked up for another week. I drove for almost an hour home to a message that I moved during the neck portion and had to reschedule another PET scan. I called and they were booked for another week. I held very still this time. Net of all this, all exams, blood tests, xray, PET scan(s) came back with no disease detectable or disease free or cancer free, depending on who relayed the results to me!  I aged about five years and asked them if I could get a 5 year checkup now but they didn't knw what I was talking about...stupid doctors  . Just kidding, after I rested a few days, I thought I would share the news, even though it was pretty long-winded. If it seemed too long, imagine what it was like from this side! Love you guys! Ed
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
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#3770 09-22-2004 08:40 AM | Joined: Jun 2004 Posts: 72 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2004 Posts: 72 | Excellent!! Life is sweet. As the greatful dead used to say (if you are old enought to remember them) Just keep on keeping on! - Candace Sister to man w/base of tongue, Dx 4/03, finished tx 9/03. 12 clear exams and counting!!
Sister of guy w/base of tongue cancer, Stage IV, Dx 4/03, finished Tx 9/03
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#3771 09-22-2004 10:02 AM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2002 Posts: 546 | Congrats Ed! I agree. Keep on keepin' on! That's the way to do it! See you soon!  Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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#3772 09-22-2004 10:16 AM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Hey Ed,
Praise God for the excellent news! I know you are on cloud nine...stay there and enjoy! Always so good to hear great news!
Take care and God bless,
Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#3773 09-22-2004 11:52 AM | Joined: Apr 2003 Posts: 148 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2003 Posts: 148 | WOOO HOOO from Kansas, Ed! I think the Uptown guy and Uptown Gal have some celebrating to do. Maybe a trip to Vegas is in order? You must be feeling lucky! Rock Chalk Jayhawk! Lisa
Lisa
SCC of Tongue Stage 1 (T1,N0,M0)
partial glossectomy,modified neck dissection 4/14/03
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#3774 09-22-2004 01:54 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | I thought about you all through the service tonight Ed, your post was the last one I had time to read before we left for the church. They say the one year mark is a good one!
Typical night tonight, forgot one kids youth group started at 6, where the others and the service start at 6:15 so I am running out the door with wet hair, no shoes on yet, fussing at everyone. Get to the church, drop 5 of them off to their perspective rooms, meet my older daughters in the chapel and have a minute to take a breath, and my first thought was of you Ed. I'm so very happy for you and your family.
Love,
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#3775 09-23-2004 12:44 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | Ed, Congratulations. The words "All clear, no sign of recurrance" are among my favorites now. I bet you didn't have to walk out of the office, but kind of floated. You will continue to be in my prayers.
Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#3776 09-23-2004 04:10 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Ed- Too cool! Love that great news! Just had a toast to your continued good tests and sent up a "Praise The Lord!!! " - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#3777 09-23-2004 08:56 AM | Joined: May 2004 Posts: 218 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2004 Posts: 218 | Congrat Ed. Looks like we ere treated around the same time. My 1 year is oct 2. I will start the testing process on Sat. Hope it goes as well as yours.
Again congrats.
God bless.
Robert Hamilton and family
SCC 1.6cm Right Tonsil 10/3/03, 1 Node 3cm, T1N2AM0, Tonsil Removed, Selective Neck Disection, 4 Wks Induction Chemo (Taxol,Cisplatin), 8 Weeks Chemo/Radiation (5FU,Hydroxyurea,Iressa), IMRT x 40, Treatment Complete 2/13/04.
41 Years Old At Diagnosis
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#3778 09-23-2004 11:51 AM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Feb 2004 Posts: 162 | Fabulous, Ed! That's the kind of stuff I like to read around here.
-Brett
Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
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