| | Joined: Sep 2008 Posts: 130 Senior Member (100+ posts) |  Senior Member (100+ posts)
Joined: Sep 2008 Posts: 130 | Patty,
Honey, I couldn't decide what to wear before I got sick. Don't feel bad about that. Just go topless : )
I am so sorry to hear all this. You will be in my prays and thoughts.
Amy
40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side.
ND March 2, 2009
reoccurance dx'd Aug 19, 2009
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | My heart goes out to you Patty. I am so saddened to hear the latest news.
Hoping you get some positive news tomorrow and as Amy says forget the top altogether :-0
Love and a big {{{{hug}}}} from across the ocean.
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: May 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2007 Posts: 104 | Patty, I am sad for you.... My heart aches for all with this wicked disease. Where are you in Illinois. I am also in Illinois. My daughter was treated a couple places here. The last and most aggressive was Univ. of Chicago. They seem to be in the top of the list of Head and Neck Cancer.....in the midwest. You can message me anytime.....
I am praying for something....
Linda
Jordan's Mom. Linda
She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Patty,
More {{{{hugs}}}} and prayers being sent your way. This certainly is not the news we had been hoping for. I hope that you have a more positive report tomorrow. Don't worry about what to wear - something will jump out of your closet and say "wear me today." If not just close your eyes and reach in.
Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Thank you guys so much. I'm pulling myself together - this is just not something I ever thought I would hear. I am thankful that I have you guys to help me through this and this site to share with my sister who is stepping up as my care giver. Her name is Carolyn and once she has a chance to read some posts and blogs, we'll get you all introduced.
Off for more beauty rest
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Patty- I am so sorry to hear of this news. I wish you didn't feel so physically bad. Breaks my heart  Wishing you all the hugs t the world. I'm hoping your family and friends gather around you and support you and comfort you. We are here for you to converse with. K
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Awe man Patty. This is unbelieveable. You have been thru so much to get this far down the highway of life and thinking no more bends in this highway. I feel so bad for you and what you must be thinking. I am praying that there is something they can do for you to get rid of this diagnosis. I am too into shock to type anything that makes any sense. All I can say for now is, make that list and ask those questions today. Listen for any answer that might give you an idea of something you want them to do. Post when you hear and good luck today,. Your buddy Jim
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: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Patty,
Words fail me...so much to handle and yes, when you feel awful, it's really too much.
Glad you have someone helping you. Sending hugs your way,
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Patty,
Thinking of you today and hoping they have a trial that will help you. Now that they know what is causing the pain, maybe they can get it under control. Please post as soon as you can and I'm am so sorry you have to go through this again.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | 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 | Hoping today is a better day for you.
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  | | |
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