| | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Actually, that's my problem right now -- Despite lack of real saliva, I am still getting secretion drainage into my mouth (which I can't swallow, so I periodically have to sponge or suction) -- When I have the excess freshly cleaned up, I can try to talk (finger over trach hole) but the stuf quickly comes back and I get a little frustrated.
Too little or too much -- Seems to be hard to get it right, nowadays! <grinz>
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Jan 2009 Posts: 16 Member | | OP Member
Joined: Jan 2009 Posts: 16 | I go back and forth. Sometimes I'm literally drooling from too much spit, then at other times I can't get my throat wet at all and need some Biotene mouthwash. At night I always wake up with the dryest mouth and try a sip of water to help. I've had three days to heal right now, but still hurt in my throat everytime I swallow - which - BTW - I'm forcing myself to keep up on my swallowing, so probably a bit of a masochist there.
Interesting that yawning REALLY hurts. Not sure what that one is coming from.
51 years Old. Non smoker. Light wine (well in a few more months). T2N2bM0 SCCHN Base of Tongue. Ripped 33 Lymph Nodes via surgery. 35 TomoTherapies Total, 1 Chemo each week. Cysplatin. Last treatment 2/18/09.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | If you run the same course I am, there will be a few more surprises with the mouth , throat and everything in between. Lets take off the gloves and get serious with all of these problems. Time to kick butt!!!
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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Keep on opening the mouth as if to yawn -- That will keep trismus at bay!
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Tom...
Daily you need to open as wide as possible and hold it for a few seconds, then repeat it a few times. Stretching like that several times daily will keep you from getting trismus. I have it and its terrible.
Keep swallowing no matter how bad it hurts. Thats another very important thing. If you are able to chew, even eatting jello, yogurt, soup, or pudding do it even if its uncomfortable and alot of work. You dont want to lose your ability to swallow and have to relearn how to chew.
I see you just finished tx, congrats! In a couple weeks you will slowly start to feel a little better. Rest and hang in there, you are on your way to recovery now.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | 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 | Tom,
Most of us suffered our worst for a few weeks post Tx. That is normal but hang in there the worst is almost over.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | keep on stretching, sometimes it felt like parts of my mouth were ripping...and other surprises also hit me...as time goes on it gets better.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I found that I could control my yawning so I only opened my mouth as far as I thought I could without tearing my skin, at least that's the way my skin felt. I also think I got some benefit of firing the muscles that were holding my yawn back if that makes any sense.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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