| | Joined: Feb 2014 Posts: 1 Member | OP  Member
Joined: Feb 2014 Posts: 1 | Hi, I am new to the forum and wish I had found it three years ago. I will definitely be spreading the word. I was diagnosed in the fall of 2010 with SCC, later found to be from HPV 16. The surgery took 30% of my tongue, part of my left jaw, part of my neck and various parts in between. A bone and skin flap from my lower leg were used to replace the jaw bone and make the free flap. Then came chemo w/ cisplatin once a week with radiation for 5 weeks. I have regained most of my speech, still do weekly speech therapy and have had an obturator fitted inside the roof of my mouth to help with articulation. Chewing/swallowing of anything other than liquids is still difficult and the PEG is still in place for hydration needs. I do drink my Fibersource but am reliant on that for nutrition. Other than that I have regained most of my strength and vitality. Having a feeding tube, (MIC-KEY button) is not such a bad thing as my meals are delivered once a month by UPS. I do miss food and work on swallowing/chewing if for no other reason than to get the flavors. I will be happy to share my experiences with anyone interested.
Dx 12/2010 s/HPV16 SCC T4 N2b. Tx resection of left retromolar trigone, left soft platae. left posterior tongue, base of tongue, mandilbulectomy, free flap and jaw bone made from lower leg bone/tissue, 4 lymph nodes positive, PEG. Cisplatin 1xwk Rad IMRT x 30
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 |
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
| | | | | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | welcome and keep up the good fight. Semper-Fi bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 | Gary, welcome. And thank you for offering to share your experiences, you have a lot to offer!
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: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Welcome to the family Gary. From your post you sound like you have the right attitude to get through this. A positive attitude is perhaps your most important allie, especially when symptoms or pain gets worse, which comes sooner or later for all of us.
Back in 1995 I was a student pilot and remember flying into Victoria airport several times from Houston. If memory serves it was a closed military base.
Keep up the fight, you will come out the other end of this tunnel better off for the journey.
Tony
Last edited by n74tg; 03-10-2014 12:41 AM.
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
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