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Joined: Mar 2011
Posts: 30
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Mar 2011
Posts: 30
Saw my ENT today regarding the lump on my tongue. Scheduled for CT on Thursday. He doesn't seem too horribly concerned about it (certainly not as concerned as I am!) Discussed my trismus and concerns about continued loss of range of motion, mouth pain , swallowing difficulties and weight loss (actually, I kind of like the weight loss, it's everything else that bothers me!) Asked for a referral to U of M. If I need to have this lump removed, or an incisional biopsy done (it's deep, not superficial) then maybe there's some surgical approach/treatment that can be done at that time for the trismus. He did prescribe the Pentoxifylline....after commenting that he wasn't familiar with the use of it for the treatment of trismus. I am thankful that he is willing to let me try it, especially considering his lack of familiarity with that off label use.

So obviously I need to find out what the CT shows. Is anyone familiar with the docs @ University of Michigan? Or surgical procedures for trismus? I'm frustrated and tired of being in pain. I'd really like to wake up from this nightmare....any time now would be good!

Joined: Jun 2007
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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Kelli, what is Pentoxifyline? How does it help trismus? I havent heard of this before unless maybe it was called something else. Hope it helps you please keep me posted.


Christine
SCC 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 smile
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Can't answer any of your questions but wants to wish you many blessings for a clear ct! Scar tissue would be a good result. Hugs!


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

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