| | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Varied from 1.8, 3.0, 4.3, 8.0 off the top of my head being cancerous. Anything above 2.5 is suspicious, but doctors rule out other factors to attribute to this, and is not relied on solely, a biopsy usually is.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Mar 2013 Posts: 421 Likes: 1 | [quote=PaulB] a biopsy usually is. [/quote]
Exactly!
"T"
57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
| | | | | Joined: Jul 2013 Posts: 114 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Jul 2013 Posts: 114 | "T"
You seem to have a problem with my comments. Please, I'm very concerned and really don't need any sarcasm and negativity in any way. You don't know the extent of my biopsies and things could be missed as I have read my so many people. Please, I'm scared and don't need this kind of response from anyone. If you don't have anything good to say-please keep it to yourself.
You don't know what's wrong with me....it could be cancer as it has all the symptoms. Positive thoughts your way and I would like the same. | | | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Mar 2013 Posts: 421 Likes: 1 | Just agreeing with Paul is all.
Good Luck!
"T"
57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | There are some oral conditions that periodically come and go, which can cause pain, other issues. The names don't come to mind off hand, but hope to find, if I can.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Jul 2013 Posts: 114 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Jul 2013 Posts: 114 | Paul,
That would be great. Thank you | | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | My ENT-HNC surgeon mentioned to me that while doing his fellowhship at MSKCC, only 12 fellowships are granted as this prestigious institution, the head of the place stated SUV stands for Simply Useless Value.
He clarified that SUV does have meaning but it is just one of MANY indicators that are used to determine neoplastic tissue.
I just mention this so maybe you can climb down the SUV tree.
Just wondering if you pursue other possible medical reasons for your symptoms besides cancer. The reason I ask and suggest you do look elsewhere is you have spent a huge about of time and energy on this one thing. It seems you might get some good ideas that it could be something entirely different.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Portland,
You are being told the same thing by everyone but you simply refuse to accept it. You are your best advocate but if doctors won't give you chemo and radiation, there isn't a lot of options available.
Go to a pain management specialist and have them kill the pain first. That will help you identify where it is at least and you can go from there.
I had BOT cancer primary and had no symptoms. I had and have SUV values 2-5 but no sign of recurrent disease.
I knew someone once that insisted he had ALS. He went to many neurologists who insisted he didn't have ALS. He had a blood circulation problem and before they found it he died of a heart attack. Many things in these complicated bodies can go wrong and cause a seemingly infinite list of possible causes. By going to whatever doctors you are recommended to go to, you will find your answer sooner. Arguing with everyone and insisting everyone is wrong only gets you to an oral cancer forum full of survivors and caregivers. There will most likely be no life-saving interventions here like there are minute-by-minute at medical facilities.
Don't give up but don't beat a dead horse. There are about 9,000 members here. Most are survivors and caregivers. Please don't ask them all.
Thank you.
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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