#91351 03-07-2009 08:41 PM | Joined: Mar 2009 Posts: 11 Member | OP  Member
Joined: Mar 2009 Posts: 11 | Hi! I'm new to the group. My journey started in Sept. 08. Had swollen lump on neck. Thin needle biopsy was negative. After removal, turned out to be malignant. Had radical neck dissection the next week. They found the primary in my tonsil. Two weeks post-surgery, I traveled cross country to Washington D.C. for work. I started having very blurred vision. Went to John Hopkins because they have a great vision center. It turns out that I had major spinal pressure building up. When they took out my jugular, they of course were unaware that I didn't have one on the other side. This caused blood to build up in my head. Took several spinal taps and meds to save my vision. After 5 days in the hospital, got to return to Seattle. Shortly thereafter, I experienced sudden hearing loss in my rt. ear. Steroids took care of this problem. I did 7 weeks of radiation, ending Dec.30, 2008. I got the feeding tube out last week and am slowly starting to eat soft foods. Best thing is I'm starting to get a little energy back. Beginning to feel like me....now if the edema in my waddle would go away, I'd be truly happy.
Kevin
Sept 2008: SCC, Rt Tonsil & 2 Lymph nodes, Stage IV
Radical Neck Dissection, 35 session radiation
Positive HPV
PEG tube....should have done earlier. Lost 40 lbs.
| | | | | 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 | Welcome to OCF. Sounds like you have had a difficult journey. Glad you can share your experiences with others. Best of luck with eating again. Its a slow process but it will get back to near normal.
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: Mar 2009 Posts: 11 Member | | OP Member
Joined: Mar 2009 Posts: 11 | Thanks Christine....glad I found this group. I knew bascally nothing pre-surgery. Wish I had found it sooner. Would have had the PEG in right away! | | | | | 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 | When you get time, please add some info to your signature. It makes it easier for us to know your history and understand where you are in your treatment.
At least you did have the PEG tube. You must be doing very well for it to be gone already.
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: Mar 2009 Posts: 11 Member | | OP Member
Joined: Mar 2009 Posts: 11 | I still have a spot on the tongue, using lidocaine on it. Other than waiting for hair in back to grow back and the waddle, I'm feeling pretty good. I've been pretty fortunate considering how I started down the path.
Kevin
Sept 2008: SCC, Rt Tonsil & 2 Lymph nodes, Stage IV
Radical Neck Dissection, 35 session radiation
Positive HPV
PEG tube....should have done earlier. Lost 40 lbs.
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Make sure you let them know about the spot on your tongue - is it radiation scarring? And when you find a way to reduce the swelling in your waddle - please let my doctors know!!! Glad to hear you are feeling better, its a slow process and you have been through alot. Give yourself time to rest and recuperate.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | 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 | Where were you Tx'ed and why were they unaware that you were missing the jugular vein on the other side? Why did they go for a RND when usually CCC's call for rad and perhaps chemo first and optional surgery post Tx in your circumstances? When were you tested for HPV and I assume it was 16+?
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Welcome to OCF..I'm glad you found us here. It is an amazing support. It sounds like you have gone though an awful lot. At least you were close to Johns Hopkins...that was lucky. Well, I guess you weren't that close if you were in DC. About an hour maybe? It sounds like you have a postive outlook and that is so important. Keep us posted and welcome to our family!!
Suzanne
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Mar 2009 Posts: 11 Member | | OP Member
Joined: Mar 2009 Posts: 11 | Yes, its a radiation burn. Was down whole right side of tongue. Now its down to about 1/4 inch square. Numb with lidocaine for relief. Dr gave me a drug to increase blood flow. Seems to be helping.
Kevin
Sept 2008: SCC, Rt Tonsil & 2 Lymph nodes, Stage IV
Radical Neck Dissection, 35 session radiation
Positive HPV
PEG tube....should have done earlier. Lost 40 lbs.
| | | | | Joined: Mar 2009 Posts: 11 Member | | OP Member
Joined: Mar 2009 Posts: 11 | David, They did radical because of lymph node involvement and size of mass. I'd rather have them all out on that side than worry some were waiting in there. No one knew I had no jugular on the other side. Probably my mom's prenatal prescription drug use in the 60's caused that abnormality! I had surgery at Highline in Burien, WA. I actually have no problem with the ENT or the radiation facility there. Pleased with their work and they helped as much as they could in battling the side effects. I didn't have chemo based on the study done at Hopkins on HPV. My dr consulted with them and they didn't see any benefit in it. Yes, it was 16+ and it was checked after the tumor was removed. I had no clue before hand. Led to interesting conversation with wife as I could have picked the virus up many years and many partners ago. Luckily the doctors backed me up on that one.
Kevin
Sept 2008: SCC, Rt Tonsil & 2 Lymph nodes, Stage IV
Radical Neck Dissection, 35 session radiation
Positive HPV
PEG tube....should have done earlier. Lost 40 lbs.
| | | | | Joined: Dec 2008 Posts: 1 Member | | Member
Joined: Dec 2008 Posts: 1 | I've been reading through the site and was amazed that there are people like me wandering around all over. I was diagnosed 10-16-2005 with SCC. I've been through the shredder the last few years but I'm getting through it. I just found this site after another one shut down so all my history is on it. But I will try to recollect info and post it. | | | | | Joined: Aug 2008 Posts: 113 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2008 Posts: 113 | We welcome you -- tell us your story. This place is a family and we can all relate to one another. We've all gone or are going through OC. I'm a caregiver and some days are very difficult as I watch someone I love go through all this. When I am down, I come here for comfort. Claudia
Husband 2/3 tongue removed March 2008. Free flap. . Stage IV. Radiation and 3 chemo's (cisplatin,taxol & erbitux). .Pet scan Aug 08 showed mets to lungs .Oct 08, recurrence. - In the arms of Jesus, July 15, 2009
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | As Claudia said...welcome, please tell us your story. You can start your own thread and then all responses will be to you. This is a wonderful, welcoming and warm home. I'm happy you found it.
Claudia, you bring much comfort to others....we are lucky you are here.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Welcome to OCF. The shredder is a good description of what we go through isn't it?? I know that you will find support and answers here.
One of the best parts for me is that these are people like me, who understand. I hope that you will share your story with us.
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: Aug 2008 Posts: 113 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2008 Posts: 113 | Has anyone heard from Sue ?
Husband 2/3 tongue removed March 2008. Free flap. . Stage IV. Radiation and 3 chemo's (cisplatin,taxol & erbitux). .Pet scan Aug 08 showed mets to lungs .Oct 08, recurrence. - In the arms of Jesus, July 15, 2009
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