| | Joined: Apr 2015 Posts: 3 Member | OP  Member
Joined: Apr 2015 Posts: 3 | Hi all, my name is Rhoda. I don't know if my situation is unique or familiar to anyone else, but I have had a 40 year relationship with oral leukoplakia (tongue), squamous cell dysplasia, p16+, HPV16 negative. I have pre-cancer that has been kept at bay with countless number of surgeries. My tongue is becoming really compromised and have been told that there is "no treatment" (other than surgery). Looking for options, praying for miracles. Eager to share my experience and offer whatever I can back into the mix. Looking forward to being a part of the group.
Rhoda~
chronic oral leukoplakia
squamous cell dysplasia
p16+
HPV16 negative
innumerable surgeries, 40 years
| | | | | 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 | Welcome to OCF, Rhoda! Im sorry to read about what you have been thru for such a very long time. from what I understand about leukoplakia, its not possible to control its return. Here's some more info from the main OCF pages... Leukoplakis from main OCF site
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: 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 | Hi there... they should remove a larger portion, and determine if surrounding teeth are causing long term irritation. They could also rebuild it after they remove an actual chunk.
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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