| | Joined: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Thanks for letting us know, Kate.
Judy sounds lie she was an extraordinary person. May she rest in peace.
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 | So sorry and surprised since she just posted July 10.
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | So sorry to hear this news. It's so sad to lose someone even when they have only been with us a very short time - I was so hoping for some hopeful news for Judy. She seemed like such a sweet lady and so concerned for others around her.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Kate, thanks for letting us know. It was a real shock when I read your note since she just posted about her issues. She sounded like a very caring person. Too many lives lost to this disease. So very sad.
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 | How incredibly sad. I read her obit and she sounds like a great lady who made great contributions to environmental protection. Who knows what else she would have accomplished!
53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | | Joined: Jul 2012 Posts: 50 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jul 2012 Posts: 50 | [quote=Judy L]How do I cope with the way I look? I am struggling with swelling in my face that makes me look freaky and disfigured. I am embarrassed to go out sometimes. Sometimes I don't care, but sometimes I don't even want my family to see me. I know I don't feel this way about other people, eg., don't care what they look like. I would appreciate any advice or if there is a smaller group dealing this issue.
Thanks,
Judy [/quote]
I know exactly how you feel. One side of my face is slightly more big than the other after everything simply because my lymph nodes on that side don't drain the same way anymore. I think I notice it a lot more than others.
But especially during treatment when my neck was peeling and scab covered and oozing I didn't want to go out in public at all. But then I looked at myself in the mirror and thought to myself "who cares?!"
See I'm gay so my whole life I've been stared at, gawked at, made fun of. So in a way I was use to it. But I just thought to myself "I'm alive and I'm not going to let other people take away how I spend my days based on my war wounds.
Last edited by ChristineB; 09-03-2013 10:25 PM.
Large sore on right side tongue. Had for 3 mos. biopsied came back stage 2 well differentiated tongue cancer. Partial tongue removal and neck disect. On feb142012. Rads for 6weeks finished in June. Couldn't speak or eat for 5 months. Clear pet scan dec 2012. Former smoker hpv- 27male. Recent ENT visit said "as far as I can tell you're cured" 💗
| | | | | Joined: Jun 2008 Posts: 51 "OCF Down Under" Supporting Member (50+ posts) | | "OCF Down Under" Supporting Member (50+ posts)
Joined: Jun 2008 Posts: 51 | I am almost seven years out and I still find it difficult to look in mirror...scars should not be like they are, I don't go out so I get still get very depressed about it....I hate going out as I still cannot eat or drink without choking
SCC Base of tongue stage 4. 10 hour operation Radical neck dissection and hemiglossectomy 23/10/06 35 Rad treatments and 3 high dose Cistplatin Dec 06 - Feb 07. Ex casual smoker 6 to 8 a day - casual drinker. Very fit and diet conscious.
| | | | | Joined: Jul 2012 Posts: 50 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jul 2012 Posts: 50 | [quote=Winteriscoming][quote=Judy L]How do I cope with the way I look? I am struggling with swelling in my face that makes me look freaky and disfigured. I am embarrassed to go out sometimes. Sometimes I don't care, but sometimes I don't even want my family to see me. I know I don't feel this way about other people, eg., don't care what they look like. I would appreciate any advice or if there is a smaller group dealing this issue.
Thanks,
Judy [/quote]
I know exactly how you feel. One side of my face is slightly more big than the other after everything simply because my lymph nodes on that side don't drain the same way anymore. I think I notice it a lot more than others.
But especially during treatment when my neck was peeling and scab covered and oozing I didn't want to go out in public at all. But then I looked at myself in the mirror and thought to myself "who cares?!"
See I'm gay so my whole life I've been stared at, gawked at, made fun of. So in a way I was use to it. But I just thought to myself "I'm alive and I'm not going to let other people take away how I spend my days based on my war wounds.
[/quote]
I didn't know she had passed until after I posted this and see no way to remove it or I would. If a moderator would like to do so that would be great. I was just trying to send love and support and people can benefit from what I said regardless. My intention wasn't to hurt people so I'd appreciate if people didn't send me messages trying to hurt me for a honest mistake that came from the heart.
I'm so deeply sorry she passed and if this made anyone rehash this tragedy.
Large sore on right side tongue. Had for 3 mos. biopsied came back stage 2 well differentiated tongue cancer. Partial tongue removal and neck disect. On feb142012. Rads for 6weeks finished in June. Couldn't speak or eat for 5 months. Clear pet scan dec 2012. Former smoker hpv- 27male. Recent ENT visit said "as far as I can tell you're cured" 💗
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