| | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | You are doing so great!!! Your bride should be very proud with the way you have handled this. Part of that success however, is most likely due to her,so,kudos to both of you!!
So glad to hear your update!!
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Aug 2012 Posts: 71 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Aug 2012 Posts: 71 | Well, it has been 11 days since my last RadTx. I went to my monthly ENT last Wednesday, and he said that he could not see anything bad (or good) since my tongue had the layer of dead skin on it, like the back of my throat. He said it should slough off by the time of my next months appointment. I told him I could take one swallow of water ok, but the second swallow kind of chokes me. He said that the first time is normal, and when you swallow the dead skin all bunches up in your throat and that is why I can't swallow the second time right after the first swallow. He said that it will improve later. He did pull the scope our of my nose very gently this time and my nose Did NOT bleed. Yahoo! I am not doing much, not in much pain, just sleeping and trying to do somethings, read, Less TV, computer, putter around. Coughing up the mucus still and thick saliva a lot. Sleeping ok at night. Still little weak and napping a bit. I expect to not go back to my job till January, but I am ready Now, (if it weren't for the coughing and spitting)  When the dead skin on my throat and tongue sloughs off, will the new skin be ok or will it be painful?
large lymph node Left Neck around May 22 2012
ENT June 6, did needle Biopsy - Negative
ENT CT scan July 9 - Negative
Remove lymph node July 26, DX - SSC - T1N2aM0
PET Aug 7, BOT
Aug 14, endoscopy, 1cm - clear margin HPV+
TX 33 IMRT - 6 Chemo - Taxol/Carboplatin
TX chemo 09/04/12 RAD 09/05/12
| | | | | 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 | You will be weak for some time. Get plenty of cals now, your body needs them to begin the recovery phase which you are probably just beginning and that's a VERY GOOD THING!!!! The thick crap will disappear and in it's place will come the dreaded dry mouth and that will also pass but it will take many months for you to recover what you will recover.
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: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hey - sounds like you are doing okay... re the dead skin... by a water pick. They have a tongue cleaning tool - works great you can scrape gently and it will clear the dead skin from your tongue and mouth. If it hurts stop. Also a super soft tooth brush may help. The water pik also clears out the gunk as you can shoot it around your mouth... take care.
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: Aug 2012 Posts: 71 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Aug 2012 Posts: 71 | Thanks David and Cheryl..... water pick .... something to think about.
large lymph node Left Neck around May 22 2012
ENT June 6, did needle Biopsy - Negative
ENT CT scan July 9 - Negative
Remove lymph node July 26, DX - SSC - T1N2aM0
PET Aug 7, BOT
Aug 14, endoscopy, 1cm - clear margin HPV+
TX 33 IMRT - 6 Chemo - Taxol/Carboplatin
TX chemo 09/04/12 RAD 09/05/12
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