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PaulB Offline OP
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Thank you Auditie, I manage, and do everything by myself, sometimes preferring that, but I will get a ride to surgery.


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
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Paul, I just wanted to check in and say Hi. What an amazing treatment plan they have developed. I am beyond impressed that you even are able to understand all that well enough to then describe it. I am glad to hear you are recovering from the recent bout of infection. Good luck with everything.
Best,
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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PaulB Offline OP
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Thank you Mary. I had it done last year too, but never heard of it before that either, and did a crash course to get educated. My Radiologist wrote a book on it, so I read it. They had fun one day asking me questions to see if I knew the answers. Good luck also with the upcoming PET.


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: Aug 2013
Posts: 144
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Posts: 144
That is a lot of stuff going on. Best of outcomes, Hopefully you will have enough space in your Sig. line. And hopfully it will be one of your last additions. Incredible that you have come this far.(radiation, Surgery and a cure. Oh my).

Shawn u.


. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
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PaulB Offline OP
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Thanks Shawn, I left out a lot, and ran out of space already lol, but have some room for NED. Just trying to keep my infection at bay for surgery, trying to relax, getting sick from the occasional Oxycodone, missing my bucket list foods before surgery, due to my teeth, is all in a days work lol. That is one of my favorite movies, Wizard of Oz, believe it or not. Once, long time ago, at work In presented some employees certificates for courage, knowledge, heath etc, so they would leave me alone lol. We used to have fun in those days, but took care of buisness when we had to.

This procedure has risk for carotid blow out, others, and read somewhere could be around 17%, but that's over time, 3-24 months. This is my second IORT, and two prior IMRT in the same area. A neck dissection is 1-2%. Usually, pre-surgery, I reflect how I got here.


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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My surgey/radiation day is finally here on Wednesday, and it was a long wait, and not relaxing at all, which is no surprise. I've been busy trying to keep a mouth infection, and a jaw abscess at bay with antibiotics, salt water rinses, the heck with adding baking soda, which tastes like fish, and biotene mouth wash, the past three weeks, which could have delayed surgery. This prevented me from eating certain foods on my pre-surgery bucket food list, but I did alright with a few meals.

During this waiting period, I tend to reflect back from diagnosis to present, and prepare myself mentally for battle. It's also good because sometimes you are asked the same things over and over by other doctors, staff, and my situation can be confusing, even for myself. I can't believe I had 8 recurrences in 4 years, and feel lucky somewhat, although it was no picnic to get here, and more than paid my dues. My radiation oncologist said he has a lot of respect for me, and few could do what I did, and modesty aside, maybe he's right, but we do it because we have to, and anyone would in the same situation.

As mentioned, surgery will be a RND, along the same surgical lines, but after three neck dissections, two radical, there is not much left, so I don't know how radical it is, but they are to take out the cancer, so you never know, and they don't really either until surgery is done, and hopefully this point does not effect the carotid artery, being it was close two months ago. After the dissection, before closure, radiation will be done directly on the tumor site with an applicator, 5mm away, and everything else protected by lead shield or clamped out of the radiation field, and dosage will be equivalent to 45Gy or more, continiously, less than and hour, instead of 4.5 weeks with IMRT. Having already had 130Gy to this area, it will be 150Gy total, my 4th radiation treatment, but is really like 210Gy. At that time, the whole surgical team, including my radiologist, the physicist, leave to the adjacent leaded control room, the OR is leaded too, and continue monitoring me by CCTV, and other life support monitors remotely controlled from there. Then when all systems are go by the physicist, the radiation oncologist presses the radiation button, I don't know if it's Red lol, to administer radiation, and authentication seems like sending off a nuclear missile, which mabe is what my cancer needs, and my thought is, "On My Signal, Unleash Hell." From Maximus in "Gladiator."

Strength and Honor


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
Again Paul, you are simply amazing.
I will be keeping you in my thoughts and looking for your updates.
I think that as you really have done your research regarding your treatment options, all will be well. You are a Pioneer aren't you.
You certainly do have Strength and definitely Honor.
Take care, be well ,
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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PaulB Offline OP
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Thank you Tammy. All will be fine, and like another doctor of mine said, I'm like a cat with 9 lives lol. Anyway, I have to go back to get another hug from my doctor in a few weeks, makes it worth it smile


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: Sep 2006
Posts: 8,311
Senior Patient Advocate
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Posts: 8,311
Good luck Paul!


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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PaulB Offline OP
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Thanks David.


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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