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Joined: Jun 2007
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Administrator, Director of Patient Support Services
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Congrats Paul on getting the official word of NED!!! Hopefully this will be the end to all the treatments. Best wishes for a happy, healthy future 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
Joined: Oct 2012
Posts: 1,275
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Congratulations, Paul, such good news!!!!!!!


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Joined: Jul 2012
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PaulB Offline OP
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Thank you Christine and Gloria! Now I hear my ENT, in addition to my RO, is leaving too. Maybe I'll be switching hospitals again. I'll find out in July on follow-up, further details.


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: Dec 2003
Posts: 2,606
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Patient Advocate (old timer, 2000 posts)
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Great official news, Paul! I hate your doctors are leaving but it's yet more proof life is moving on. Congratulations on some good news.


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
Joined: Jul 2012
Posts: 3,267
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PaulB Offline OP
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Thanks Uptown!


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 2012
Posts: 3,267
Likes: 1
PaulB Offline OP
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Posts: 3,267
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Study suggests Proton Therapy may be effective, less toxic treatment option for head and neck cancer.

http://www.news-medical.net/news/20...ent-option-for-head-and-neck-cancer.aspx


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 2011
Posts: 1,024
"OCF Kiwi Down Under"
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Posts: 1,024
A good read. Thanks Paul.


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Jan 2013
Posts: 1,291
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Patient Advocate (1000+ posts)
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[quote]Study suggests Proton Therapy may be effective, less toxic treatment option for head and neck cancer.[/quote]Ditto that. Given the benefit of PT is to more precisely target the rads to the tumor, it makes sense it would be less toxic as less rads are hitting unintended areas.


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: Jul 2012
Posts: 3,267
Likes: 1
PaulB Offline OP
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I've been following up my doctors since May, probably around 10 visits lol, but it seems after a few days of visiting is when you develop problems that could have been addressed by one of them.

Currently, I'm dealing with chronic tooth, gum infection, abscesses. I saw my oral surgeon who prescribed a different antibiotic than PCP, who also prescribed Motrin 800, but wouldn't give me any oxy meds for the pain, so he is on my hit list to change! The oral surgeon, who I've been seeing for the chronic infections since last year, was waiting for me to come back after completing my recent treatment, which was in January, and was further advised to wait by my RO's for healing, clear scan, 6 months to do anything. I was to enjoy a few weeks break, minus other dr appoints, but my mouth, gum was irritated eating food, and developed an abscess in the chin, jaw area, so had to deal with that.

The oral surgeon is afraid to do anything now with all the radiation I had. He said whatever is done won't be easy, and needs to check with my RO, so have to go back on June 30th, and need to get rid of the infection first with the antibiotics. The good thing is the panoramic x-ray shows no change to my jaw since last October. My last visit was the first time I was asked if I had Medicaid, which I don't, and have Medicare, and was told it doesn't cover extractions, which I knew, but thought I was under a special program, never seen any charge, but the hospital was recently taken over by another, so they probably want a profit. The oral surgeon said I can't stay like this, and will, I guess we, have to find a way.

The teeth issues were somewhat under control, but then my shoulder decided to act up and be a bigger problem. My oncologist wants me to see a neurologist, and could make the appointment for July 30th, the earliest, and didn't ask or any pain meds, only ambian since I thought I would get something appropriate from the neurologist. My lyrica prescription ran out too.

My previously prescribed physical therapy for all around strength never happened, canceled 3x due tooth pain, nausea from the meds. I finally scheduled an appointment on Thursday, and can add the shoulder problem to the list.

I don't know what initiated the problem, surgery, treatments, injury or combination. It could be from the radical neck dissection, whereby the left neck muscle was removed, another surgery with a left pec flap, the carotid artery removal, and all the radiation, one which was in level V on the brachial plexus nerve, and often bounce off/hit the wall, door frames from lack of vision in the left eye, and unbalance from neuropathy.

I have noticed more numbness to my hand, arm, in addition to the already present neuropathy since 2009. I have limited arm raising ability from surgery, but never pain, and movement is even more limited now, and feels like pulling from my back, shoulder, and think the trapezoid atrophied. If I do raise my arm. I kind of swing it and or use my right arm to raise it like when I shower, and using a heating pad and tiger balm, which somewhat helps.

I may see pain management again for the neuropathy, teeth issues, and shoulder pain being many doctors are afraid to prescribe oxycodone or similar, which is a problem here in nyc with addiction, and black market selling. In fact, where I live the doctors have to check a database, I guess input too, to tract your controlled substance prescriptions records. It's ironic when you can get anything you want in this city, and never wanted any, and now I can't even get pain medications when you need them or it being a hassle. I can go to some of my other doctors, but I've just seem them, and no controlled substance can be telephoned in or by computer. You need a written prescription, and is only prescribed for 30 days, no refills. I guess it's the same all over.

To be continued lol. Maybe I'll post again in after treatment in the future.



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: Apr 2013
Posts: 319
Platinum Member (300+ posts)
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Posts: 319
PaulB, you are one tough cookie, that's for damn sure! I salute you, my friend!

You set and example of class and strength for all of us to benefit from; and I admire you for it!


My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
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