#96251 05-28-2009 05:29 PM | Joined: May 2009 Posts: 72 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: May 2009 Posts: 72 | Recently diagnosed 5 days before my 49th birthday. 4A stage T2N2BMO tonsil cancer. Spread to lymph nodes right side. Heavy drinking pot smoking non tobacco using trash can for 24 years. Clean and sober for the past 13 years, a blessing. 14 days post tonsillectomy. 10-14 days before radiation and chemo treatment. Meet w/medical oncologist tomorrow. I had the mask made on Tuesday and after two runs through the CAT scan they still couldn't get me centered to their satisfaction. They finally had it right but the machine malfunctioned and the table wouldn't move for the final third scan. They had to shut down the machine to reboot so now I've been stuck in the mask immobilized for a long, long time. Had a panic attack but they finally managed to calm me enough to finish the test. First time on any type of forum. I have a supportive and loving family.
Jeff age 49 DX 5/8/09 Tonsil cancer T2N2BMO. Tonsillectomy 5/14/09. TX: Cisplatin 3x's every 21 days w/ 33 Rad concurrent. 2-3 nodes on right neck affected. PEG 7/10/09. Chemo/rad start 6/12/9, TX finished 7/28/09. Extended TX
3 more chemo/Cisplatin/5FU/Docetaxil start 9/11, Clean PET 10/29/09.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Well Watt, welcome to our family. WE have all been there , done that. well mostly all. I want to wish you luck and may things go as planned.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: May 2009 Posts: 72 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: May 2009 Posts: 72 | Hey EZ Jim how to I add my diagnosis and treatment plan to the bottom of my profile? I filled in diagnosis on my profile but nothing shows up. I guess this forum is new to me! What am I missing?
Jeff age 49 DX 5/8/09 Tonsil cancer T2N2BMO. Tonsillectomy 5/14/09. TX: Cisplatin 3x's every 21 days w/ 33 Rad concurrent. 2-3 nodes on right neck affected. PEG 7/10/09. Chemo/rad start 6/12/9, TX finished 7/28/09. Extended TX
3 more chemo/Cisplatin/5FU/Docetaxil start 9/11, Clean PET 10/29/09.
| | | | | Joined: May 2009 Posts: 72 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: May 2009 Posts: 72 |
Jeff age 49 DX 5/8/09 Tonsil cancer T2N2BMO. Tonsillectomy 5/14/09. TX: Cisplatin 3x's every 21 days w/ 33 Rad concurrent. 2-3 nodes on right neck affected. PEG 7/10/09. Chemo/rad start 6/12/9, TX finished 7/28/09. Extended TX
3 more chemo/Cisplatin/5FU/Docetaxil start 9/11, Clean PET 10/29/09.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Watt, Have you looked at HPV. You may fit the profile.
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.
| | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Welcome Matt. I had the same diagnosis but no tonsillectomy as the RO said the radiation would just burn the tonsils away anyway. Also had a panic attack during mask fitting when I started having trouble breathing. Went from 0 to panic in no time. Anyway, my advice, between now and start of tx, eat every food you love and try some you always wanted to try. It's going to be a while before you can enjoy food again. Also, if you are not comfortable with the mask, ask for a rx for valium, unless drugs are a problem for you. Are you going to get a feeding tube? It will be a great help when swallowing becomes difficult, about 2-3 weeks in. Best of luck to you. This disease is beatable.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Watt, go to my stuff and scroll to the bottom. You will find it there, IO have to redo mine one day, i didn't have near enuff room for everything.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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