| Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Thank you Ambra, and for taking the time to write even with your own troubles, surgey, and hope you feel better. Waldeau, I used all the Biotene products, but was not given prescription fluoride, dental trays by a local dentist with my radiation in 2011, I should have known better, maybe there are other contributng factors, but I need all my teeth extracted now, three years after radiation to the mouth, plus having to do HBOT again, but I'll prefer that over a recurrence, if only I can choose so.
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) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Glad to hear all is going well Paul. Take care. 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!
| | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jun 2013 Posts: 262 | Paul, you ARE the miracle man. Thank you for posting the dental info; this is a topic my medical team shortchanges a bit. Fingers crossed that you have a squeaky clean scan in May!
Lynn
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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Good news, Paul. I hope your cooking time is ramping up well. I'm glad your taste is better.
I never got the trays and all in all, dental seems to be the least of my concerns. I do use a Sonicare as was recommended years ago. It keeps me from brushing hard and helps keep the plaque buildup around the gums. I had 8 back teeth crowned at the first signs of problems around year 4.
You are doing remarkably well, given all you just went through, much less what you had already made it through. I would probably lay down and die if it weren't for people like you with a never ending drive to survive! Keep giving me something to shoot for, my friend. If my docs even suggest giving up my daily lattes, there would be a Texas Death Match. Espresso helps ward off prostate cancer, even. I saw that on the news plus I now have you as additional proof, if I may quote you. Plus bike riding may increase the risk of prostate cancer. o.O
Tonto
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 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Thank you Tammy, Lynn and Tonto. Spoke too soon, have an abscess, infection in my mouth again probably from eating abrasive foods...I try everything lol. Taking antibiotics, and being more diligent in mouth rinsing. This soon shall pass, but I see my oncologist on Tuesday.
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: Jun 2013 Posts: 262 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jun 2013 Posts: 262 | Ouch Paul, sorry to hear about the painful setback! I had smiled to think of you returning to your free-tasting foodie ways...You will get there, my friend. I sure hope you mend soon.
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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Thank you Mamacita. Not much holds me back from food once I got my food game on lol. I made seafood paella yesterday, and bought some donuts to wolf down with some coffee tomorrow. My oncologist didn't want to prescribe any more antibiotics since the abcesses subsided, I can understand that after having C-Diff in 2010, and to continue rinsing several times a day with salted warm water. She gave me the ok to start gong to the gym (YMCA), which sounds more than what I will do to start off with, and to start some walking outside. Spring gives me energy anyway.
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 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I never did go to my graduation party, never will lol, since I don't like celebrations for myself, but I am going to my friend's next week, who I met during our treatments. His is prostrate cancer, and had to go through 44 treatments, ouch! They have to drink at least 16 ounces of water, if not more, right before rads, and some other maneuvers. I guess sometimes we are happy with our own treatments, side effects, then someone else's, and he felt the same for me lol.
Anyway, I mentioned them giving the ProCure Challenge Coin, instead of ringing the bell. On the last day they play the theme to Rocky, "Gonna Fly Now" to strut your stuff, and then present you with your graduation certificate, Challenge Coin, but take it back if you're gong to the graduation luncheon. Here is the history of the challenge coin since many are unfamiliar with it, including myself, as presented to us, which I now carry in my pocket.
"The history of the Challenge Coin dates back to World War I when American Volunteers filled up the newly formed flying squadrons. Some of these volunteers came from wealthy families, mostly students from Ivy League schools. In one of the squadrons, a wealthy lieutenant ordered emblems I solid bronze and conferred them to his own unit. One of the pilots placed the medallion in a tiny leather pouch and wore it around his neck.
Just a couple of hours after the medallions were conferred; ground fire seriously damaged the aircraft of the pilot. He was compelled to set down just behind enemy lines and was captured by one of the German pilots. Placed in a prisoner-of-war camps, all of his personal belongings and identified were taken. He was left only a small pouch that was hanging around his neck. Shortly he was transferred to an occupied French town a few kilometers away from the front line. Taking advantage of the situation, he managed escape, without his personal effects and identification.
He succeeded to escape the Germans by disquieting himself in civilian clothing at the front line. Although it was easy for him to elude the patrols, the difficulty was in crossing the no-man's island, but he eventually succeeded. He then made his way to a French outpost.
Unfortunately during that time. German Soldiers dressed in civilian clothes had been sabotaging the French sector. The French soldiers, believing the American to be one of these German soldiers, prepared to execute him. The only thing that he had was the pouch that contained the medallion.
He showed the medallion to them and one of the French captors recognized the insignia. After long deliberation, they released him. Soon the pilot was back with his squadron and the medallion became a tradition. It was then that the members of the squadron carried the medallion with them anywhere they went, thus giving birth to the Challenge Coins.
When it came time for the leaders at ProCure to think about something we might give patients at the completion of treatment, the decision was made to give a Challenge Coin. There is no great story behind why we chose this. Our patients are living the great story. The coin represents our unity and passion--both patients and ProCure team members.
As you accept this coin, as you take hold of it and keep it with you daily, may it be a reminder. It is a challenge to ourselves and those we serve: the patient, the family, and each other. May the words written on the coin act as a reminder of the unique journey which brought you to this moment: for it is your inspiration, your strength, your spirit and your dignity which encourage hope to blossom when it is shared."
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: Jun 2013 Posts: 262 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jun 2013 Posts: 262 | NYC does know how to celebrate! I would have loved the Rocky music, challenge coin, all of it. My caregiver even more so. I did get to ring a wind chime that hangs in an alcove near the exit to the lobby, but no one is with you and there's no hype. Later, they sent me a "Challenge Invoice" which will indeed be around my neck for some time to come  Paul, until I read about your events I was content with mine! No longer feel guilty for all the kleenex I used there. Lynn
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: Jun 2013 Posts: 262 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jun 2013 Posts: 262 | p.s. I am wondering what's served at the Graduation lunch. Picturing buffet with Jevity, jello, mashed, yogurt, ice cream for dessert.
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
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