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Joined: Jun 2013
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Hey there, Miracle Man....time will tell on the side effects, but your spirit is already shining through!

Take it slow and easy, let people do for you. So glad to hear your docs' happy assessment of the early outcome.

(((HUGS)))


53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
Joined: Aug 2012
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Glad you made it thru another tough surgery. Now I think we need a new abbreviation CARBOT.


Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
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PaulB Offline OP
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Thanks. it's for Temporary Carotid balloon occlusion test, but it's TBO. They may have a few others.


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
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"OCF Canuck"
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"OCF Canuck"
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Hopefully your eye will come back once the nerve has a chance to heal! So glad you got through it all and are now home and can rest! smile


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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I saw my ENT today, who says how is the miracle man doing lol? My stitches were taken out, and reviewed with him a few items lingering since surgery, coughing, my eye closed more (Horners syndrome), lowered raspy voice, and being out of breath. As previously said, he had to take out the vagus nerve with the carotid artery. He is sending me to the laryncologist to revisit getting the collagen injection to the voice box strengthening it to correct the voice and coughing. Other than that, he is happy with the surgery, and go back in four weeks. We both agreed, being its not new, I could have deconditioned myself, and lost 25lbs since the summer. On Monday I see the radiation oncologist.


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
Well, that's sounds pretty positive Paul.
As Charm used to say, the " tincture of time" helps with all these side effects. Hope you can get the collagen and that it does indeed help. In the mean time get eating. Try Christine's smoothie recipe for a huge caloric hit and join Ed at the gym to condition yourself.
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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Thanks Tammy,

That's two areas I don't need much help with, although I like discussing, and get along with most who do in exchange for ideas. I can and do cook just about everything, and probably have 500 cookbooks, almost every gadget, although I slacked off, and simplified my cooking since having cancer, but I used to make like 15 dishes for holidays, barbecues. I got my incentive working in some of the world's best hotels, doing executive protection for 25 years, and met many great chefs, just about every celebrity too, ate plenty, although cooking wasn't my occupation, I got along with the chef's, and that's a tough group to work with lol. I think last year for NYE I made 14 seafood dishes, but I pace myself now, and not too much multitasking. I don't know yet what I'm doing this year. I've been a gym rat since I was 15, most my work later on depended on it one way or another, and would gain, lose, at will when I wanted, depending on my activities, goals, going from 130-275lbs at 5'10", they say I'm 5'9" now lol. my lowest, highest weight, sometimes losing 20-30lbs a week, a 100lbs in a year a few times. My average weight was 245 for many years before cancer, lost over 110lbs from it, but slowly gained about 50 back in three years. I went up to 200lbs this summer from exercising. I can gain quick since muscle, and fat lol, has memory, and my doctor said not to gain anymore weight due to the harship on my kidneys, so when everything started to hit me...kidney failure from kidney stone, btw caused by chemo, teeth from radiation, recurrence, surgery, I went with the flow knowingly, and just lost the weight, but I think 175 is good for me now. I've been there, done every fad, diet, supplement out there since 1977, and believe most are a waste for various reasons, and don't take much, vit D, folic acid, unless my doctor tells me, and just do my own thing now...I live to eat lol. I wish to drink too, but lost my taste for that.

Just talking makes me want to exercise, and go cook something lol. Maybe this weekend I'll hit the gym, make linguine with white clam sauce tonight, maybe baked clams.


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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You. Rock. Paul.

I'll come out there, you cook and you can be my personal trainer too. My muscles can't remember what they are supposed to do. I guess my muscles have succumbed to CRS disorder.

If the collagen helps strengthen swallowing muscles please let us know. Always looking for a boost even if I spent the last 3-5 years trying to stop collagen production of all things.

Get up to pursing the lips and trying to blow out through your mouth with bursts of air. It strengthens the coughing and breathing muscles. After more recovery of course. Working on all that will help the body adjust to vagus nerve deficiency.

Rock on you beast!

Ed


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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Posts: 3,267
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PaulB Offline OP
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You rock Ed. Sure, we can go to the gym, but I move at my snail pace now, baby weights too lol, but as long as I get there, hopefully, is what matters. I have about 6 free passes. I took my walker yesterday, but didnt use it, only my cane. I didn't want my surgeon to see me dragging myself, wounded, after all the hard work he did, strange but true. I made meatball muffins, in a cupcake tin instead this morning, already in the oven. Thanks for the lip advise. The speech pathologist was going over taking a deep breath, holding it, turning my head looking to the side downward to do a forceful swallow when eating, which may have assistance?

I made a post before about the collagen injections, but will update on my consultation. Last time he thought I din't need it, but thinks changed recently.

Thanks.



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: 4
PaulB Offline OP
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I had my follow-up with my radiation oncologist yesterday, who is no ordinary doctor. He is also a professor, ENT, and a Hematologost too, specializing in head and neck cancer, and is the chairman of the Cancer Treatment Centers for about 5 hospitals, so when I see him, that's the final say.

I thought it was going to be routine, post-op visit, and was told by his fellow in the hospital no further radiation was planned, which is sometimes given after IORT, and did so last year.

My doctor had his fellow working with him again, actually several, and went over the usual history, surgery, exam, but asked if my ENT went over the pathology. He did, but I didn't pick up a copy yet, and went over much that was known to me, but added, we are trying to see if more radiation can be given safely, so I figured things changed in two weeks. My oncologist eventually comes in with everything updated, and starts to go over surgery, the findings and what he wants to do...my first surgery they saw cancer was wrapped around the carotid artery, so pretty much everything was scrapped after deciding to come back and remove the
Carotid arterty, to remove the cancer, and so I can have more radiation during surgery, which was done after pssding the balloon occlusion test, agiogram. Anyway, my doctor said being I'm young, fairly healthy, good shape...I know whete he is going lol, he wants to give it everything he can, and do more radiation and chemo, but this time he wants to send me to do Proton Therapy in New Jersey, which will be inconvienant for a few weeks, and once a week do chemo at the hospital, which will be a visit to New Jersey and Manhattan. He believes there is a 75% chance the cancer will return, and I said it's probably 100% with me, and agreed, and would die from it. More radiation is not without risk either with my prior radiation. and it's good the carotid was removed, but there is still risk of the stumps leaking, 20%, which would be instant death, so he basically said, which odds do you like, 75% or 20%. Of course I chose the 20% risk, and agreed I was doing the right thing, and said he was not giving up on me yet.

The problem is getying to New Jersey is very inconvienant being I don't drive, and get around with nyc para-transit, aka Access-a-Ride. Basically I have everything set up at home for my convienance..food deliveries, prescriptions, laundry, a cleaning women, and only need to travel outside to go to the doctors by access-a-ride, which does not go to New Jersey, and never figured going there being everything I need is in NYC, except Proton Therapy. There are only 10 places in the U.S. that has Proton Therapy, none ate in NYC, not even MSKCC.

Surgical Pathology for 10/16/13:

A. Left pericarotid mass rule out carcinoma, excision: Moderately differentiated SCC in Fibroadipose tissue.

B. Supplemental Deep margin excision: Involved by carcinoma

C. Left pericarotid mass #2, excision: Squamous cell carcinoma in scar tissue with suture granuloma.

Surgical Pathology for 6/24/13:

Catotid: Segment of Artery showing squamous cell carcinoma in perivascular soft tissue. Perineural invasion present.

Note: The superior and inferior cross-sections are involved.


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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