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Patient Advocate (1000+ posts)
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Ed,
That is hilarious! Your kind of water spouts is VERY different than the water spouts I think of. Probably a lot closer to the truth of the Bermuda Triangle as well.


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
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Patient Advocate (old timer, 2000 posts)
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Exactly, Don, although a whale would have been more fun to ride. smile

I loved that shirt, too. frown


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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I'm just getting back after a few days having to reset my password, darn iPad. I too thought it was a whale lol.

I didn't go to radiation on Wednesday, due to the snow, so another day will be tacked on at the end of the day, and as a result, will need another carboplatin infusion next Thursday, and would have finished already if it were not for the days missed with the snow, and holidays. I previously spoke to my RO about missed days, cancer regeneration, and loss of survival rate, 1.7 days for each missed day. He said its true, but is not that concerned with me being my tumor was removed surgically, and is what's left is microscopic, but still best not to miss any.

I couldn't go to my early Proton graduation party yesterday since I needed to go to chemo right after, but will be invited back one I finish. As mentioned, it's a cratered affair with prior Proton radiation patients, staff and any other current patients there. For a child, they gave him a sponge bob cake, and a few days ago had a consumed dressed sponge bob there, and looked good. I don't know how this place makes money with its football field sized facility, staff out numbers patents, which is not busy like others I've been, graduations, gift bags, prostrrd patients get a $100 white robe, and if there is delayed treatment from technical problems, they order pizza for everyone lol.

The decadon, aka prednisone, dex given by IV prior o chemo, once again raised my blood sugar over 600 last night. Working on getting it down with medications, and is at 450 this morning, and have bern up since 3am. It like your mind is racing after drinking 20 cups of coffee, but still being tired.


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






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PaulB Offline OP
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A basic video overviews of Proton Therapy, and the cyclotron.

http://m.youtube.com/watch?v=LGVRiMWr-8c

Last edited by PaulB; 01-26-2014 05:06 PM.

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: Jan 2013
Posts: 1,291
Likes: 1
Patient Advocate (1000+ posts)
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Hey. Got stuck viewing a few of those videos on proton beam therapy. Amazing technology. No wonder why it is still so rare and costly. Unless someone with sufficient curiosity did the research they have no clue how much machinery and technology surrounds them and beside them to create and deliver the dose.

Also very comforting to know there are techniques like this to deliver such precise dosage within the body while sparing the other non targeted areas.

Thanks
Don


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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Today I graduated from Proton Therapy at ProCure's Proton Therapy Center in Sometset, NJ, and finished my chemo too! I received my certificate, as thier 507th patient, my mask, which I will decorate, and a ProCure commemorative challenge coin, which history, significance, dates back to WWI, so there is no ringing bells here, which also has history, significance. I can also attend a catered luncheon for graduation, and all future weekly graduation luncheons as an alumni. Free food forever lol. and a classy place!


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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You're welcome, Don. I thought you would appreciate it. I never got to meet the Wizard, who is still elusive!


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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"OCF Kiwi Down Under"
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Posts: 1,024
All good news Paul. You look like you have come through this treatment unscathed. Now to get on with life , and wait for the scan I suppose.
Hope your blood sugar levels are back to your normal.
Tammy


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!
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Posts: 3,267
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PaulB Offline OP
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Thanks Tammy. Not yet. After the recent surgeries, treatment, chemo, I was almost knocked out this morning after radiation by low blood sugar! I felt it, had white patches in my vision, so knew what it was, and asked the nurse for orange juice, who had me sit down. Now it's on the way up hign again fro. decadon I had after. At least it's all over, but both radiation, and chemo effects, are still working for a few weeks.


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: 76
Supporting Member (50+ posts)
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Joined: Apr 2013
Posts: 76
Congratulations Paul on conquering the Proton! I love that you are a perpetual lunch guest if you choose to be. Take care, and, of course watch out for water spouts--now that we all know what they are (I thought whale too)

Best wishes,
Mary


Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
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