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Joined: Dec 2012
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Joined: Dec 2012
Posts: 26
Paul, it's good to hear that all is scheduled. Know we'll all be pulling for you.


SCC Started in the right tonsil they think, T1N2bM1
HPV+
Lots of nodes involved including some near the carotid - didn't come out during neck dissection
Distant Met's - one in the mediastinum, some suspicious stuff in the lungs
Radiation 70 Gy in 35 fraction
Cisplatin - 3
Stereotactic rad to the mediastinum
Clean PET Apr 13
Clean PET Aug 13
Clean PET Dec 13
Clean CT with contrast Mar 14
Clean CT with contrast Sept 14
Clean CT with contrast Feb 15
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PaulB Offline OP
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About 200 million. You enjoy the holidays the same.


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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Posts: 3,267
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PaulB Offline OP
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Well, January 6th didn't go over well with my two radiation oncologist's overseeing my care at the hospital, who don't want to wait any longer being I had a neck dissection on October 24th, with positive margins, so now I'm starting radiation this Sunday, December 22nd at 7PM. This was the schedule coordinator idea at the private radiation center that came up with the January date, which I happily agreed, but should have checked first with the doctors before I started calling everyone, and this morning, I had to call everyone back to re-schedule transportation, and chemo, which will be on December 26th at 9am, which is going to be more of a inconvienance to go there, which is not easy for me not driving, getting back home, and then going to radiation later in the day. Now they say only night positions are available for radiation, and there was no mention of this previously, and hours of operation were Monday through Friday 8am-4:30pm, but they are closed on the 24th and 25th, so those days will have to be made up, and is going to be a problem for my driver driving at night, including myself. Plus, the concierge who handles booking restaurants, hotels, told me three weeks ago, it looked like in the computer I was starting on December 19th, which proved correct, but when I spoke to the schedule coordinator that same day, she said she has no idea yet, is the one who schedules, and treatment plan wasn't completed.

My cardiologist, who I visited on Tuesday has to send a clearance letter that I can start chemo, which he verbally gave me the ok, so had to call his office too, and the oncologists doctor's office manager said she was going to call yesterday, and today I have to do so.

As I already learned, you have to do the work and coordination most others in the medical profession should be doing, and are either too lazy, not competent enough or playing stupid to do themselves. Getting tired of this nonsense, and I didn't even start treatment yet lol. I just feel sorry for the next person that steps out of line with me cause their going to get a mouthful from me. I already don't like the schedule coordinator, and haven't even met yet, based on their doings, availability, demeanor, and tone of voice on the phone.


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"
Patient Advocate (1000+ posts)
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"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

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Posts: 1,024
Oh Paul. This is so frustrating. However I admire your self control. I would have lost it long ago.
I hope your driver is organised and you get some assistance with all these costs.
I also want to wish you a happy Christmas. I don't suppose it will be too merry. I will think of you on the day and say a silent toast , praying too that this treatment does what it is supposed to do.
Happy Christmas and here's to a Healthy 2014.
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 for the thoughts, Tammy. I think I'll be ok for Christmas eve, day, at least, with only two radiation treatments under my belt by then. Still concerned going into something that has a 20% risk of death for me, basically from carotid bleed, aka blowout, but another RO, with lesser experience, says it's a little over 5%. Both are stil high to me lol, but really have no other choices, except do nothing, which is hard for me to do, and I like to strike back first!

Happy holidays!


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: 57
"OCF Canuck"
Supporting Member (50+ posts)
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"OCF Canuck"
Supporting Member (50+ posts)

Joined: Jan 2013
Posts: 57
Good luck Paul happy holidays looks like we will have a white Xmas up here


46 yr old non smoker moderate drinker
Lump on neck
Dx branchial cyst by fna mar 2012
Op to remove dec2012 biopsy back hpv 16 scc
Starting rads jan 31 no chemo docs say?
Finished mar13
Pet scan june 30 NED :)))
Back to work and enjoying life
Checkup aug 12 all good
Joined: Jan 2013
Posts: 1,291
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Patient Advocate (1000+ posts)
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Paul,

Keep up the good fight and enjoy the holidays as best you can. 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
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PaulB Offline OP
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Thanks Don, I will! Lining up my menu already lol, all seafood on Christmas Eve, linguine with octopus puttanesca, Caesar salad, bacala salad, fried calamari, and shrimp. For breakfast Christmas Day, Panettone eggnog French toast, bacon, bagels with smoked salmon, cream cheese, onion, avocado, juices. Maybe ham or duck for Christmas Day, lasagna, if I feel up to it, mashed potatoes maybe with carrot or turnip or just roasted, shrimp cocktail for appetizer. I'll probably wing it, and like the soup Nazi sometimes, "No Food for You!" If anyone acts up lol.

Enjoy yours as well, Don, and Doolittle.


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 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
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Joined: Dec 2010
Posts: 5,260
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Dude I like your rads dr. I was about to say the same thing he did... The minute they offered it tomorrow - I woulda been there with bells on even if I had to kidnap one of santas reindeer to do it. this is NOT something you wait to do - because it's inconvenient. No one wants to go through treatment during Christmas I totally get it but I'd be willing to forfeit this one to live to see another one. Kudos to him. And as always hugs to you.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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PaulB Offline OP
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Thanks, it was much more than the holidays, if at all. My oncologist has to approve my getting chemo, and with a days notice, I didn't know what was possible, when I could start, and asked to call back, but person was impatient, plus I'm having an echocardiogram on Monday, as part of my chemo check-up requirement, and still need a stress test, and cardiologist had to give approval to my oncologist. Also, I have no way of getting there, and have to pay someone, have to come up with $375 a week on a fixed income, and give them notice also, and didn't know their availability at the moment, and already told my driver it didn't look like I was starting next week, and been doing this week to week. All was needed was a little cooperation, and coordination from the radiation center, and funny how the concierge knew when my start date was 4 weeks ago.

After 8 different cancer treatments, 8 recurrences, 4 years continuously having something done, hundreds of doctor visits, tests, it is and has been an inconvienance for everything, hurry up and waited plenty.


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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