| Joined: Aug 2010 Posts: 157 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Aug 2010 Posts: 157 | Hey Friends,
It has been confirmed, I am officially back at it...I am disappointed, Doctor is disapointed but said he is ready to go and will hold no punches. The suspicious spot came up about a week after my ALL CEAR ct/scan. For a while in between scans I would bust the door down, make someone look at every little detail going on in my mouth. Besides the the difficulty of coping with all that happened and given an all clear each time, I was driving everyone crazy. I found a new diagnosis in my life, OCD ( put him on drugs ). Got a wristband froma co-worker that said OBSESSED, I found something better than the news, yes I did , my mouth.
My mouth has became a constant live broadcast since the day I could get my mouth movement going, hey I love to talk. I enjoyed watching as the radiation sores went away, then the thrush ( my kisses back from my fiancee and puppies! ) because of such horrible breath! As I look with my flashlight in the mirror, tongue cocked to the right and lights off I see something. A very, very small white patch next to a scar; hmmm,what the hell is that? Well I go to the doctor next monday which I believe was July 9th and got that ALL CLEAR scan again and three of them looked in my mouth, I told them about that spot, they recognized and none were worried. About 2 weeks goes by, I play a huge art show with my new band and by that monday I notice a slit in the morning as I am getting ready for work. I think to myself, that is not right, but looks like a change, I know this from 50+ flashlight looks a day.
I have my fiancee look, she is in no way worried and says looks healthy just as the doctors say, just looks like a line maybe the radiation has caused. Another week goes by, I was out eating with some friends and just felt an uncomfortableness, not necessarily a pain or irritation. But hey, I figure must be the fajitas or the Negro Modelo but when get home the line has become a split. Korinne calls that monday, count is being assholes and we cant get an appointment. I worried my mom, and everyone else around me because now this line is a split and I swear I am not crazy. I honestly was kind of tired messing with the doctors, and looking n my mouth, scheduled for a new councelor and I am all this is me, I caused this line by looking to damn much. But I finally decided to go, walk in the ENT when the nurse walked out, acted like I owned thhe place and had one of the head doctors students look. He looked concerned, finally grabbed the partner of the head doctor and he says " Biopsy now, I dont like the we it looks inside of there. " Now this week,yesterday I am officially going back to war.
My doctor is fast tracking surgery and grabbing a colleage from MD Anderson whom specializes in forearm flaps. They dont know for sure but are thinking eith all or most of my tongue is gonna have to go. I am sure most of you know me, sorry about all the ranting at the beginning of this but I am trying ok. I am trying to get out of the mental mess I am and need questions and suggestions from you guys soon.
They ordered the CT for Sept 9th, and then the surgery consultation for Sept. 12th. They havent said yet, because I gather records todey but he says radiation is out of the question for the moment because of healing issues. He wants to do a free flap from my arm, depending on what they see in my neck and tongure then will know how much to take and what they may do. The pain is at minimal right now, nothing close to what and how it felt last year. Back to what I was saying, My obsession with this cancer and my mouth hopefully saved my life. I just had an ALL CLEAR scan, and then this popped out of no where,I turn 29 on September 12th, my surgergy consultation. It has now almost been a year since surgery and over a year I have been physically,emotionally, and mentally fighting this disease. I am begging for your support and suggestions.
Your Friend, Nathan
P.S.-I believe in my ENT team, 2 of them are from MD Anderson and the others MEMORIAL. I am in the county system but hope they make the right decisions. But I need to know more of what to ask, that's where you guys come in. Last time was left neck dissection, left tongue partial glossectomy 49 lymph nodes 2 positive.
SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
| | | | Joined: Aug 2010 Posts: 157 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Aug 2010 Posts: 157 | One more add to my rant: Thanks for the link Christine! Super Inspiring, and remember...I was HPV- , smoked heavily for about 10 years, and drank heavily for about 6. But my entire team now believes this is all a stroke of bad luck and I had a cell mutation from maybe a bad gene. The main doctor said he sees smoking/drinking tongue cancers in adults 40 + . I am trying to tell myself this is all just that. Crap Luck.
SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
| | | | 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 | Glad you caught it - and it sounds like you caught it early too! So hopefully surgery will get it all and there's no movement into your nodes, or what's left of them. I gather you didn't have a reconstruction before? Well a fair portion of your tongue isn't an easy surgery but the are people here who've had total glossectomies and hey are doing okay a few years out. Not to say that it takes that long but that is where they are at now. Are the considering a clinical trial for you? Or proton therapy? (I think that's what it is..). They do it for some recurrences I know one or two people have had it here. It's almost like burning the cells out. It's a good thing you are so diligent with your exams. I'm not sure if I would devote 50+ times a day to it... Once might be good. But at least you caught it and if it didn't show up on your scan then it's probably early stages!
Good luck... Hugs and take care!
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
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Nate It's with a heavy heart I welcome you to the DAMN, IT CAME BACK CLUB, otherwise known as recurrence. Your news makes the recent posts about remission being a temporary term all the more relevant. The only bright spot in all of this is you can finally quit worrying and obsessing about whether it's coming back. Not much consolation, I know from personal experience. Take a look at this OCF poster's link Kate Brown - More than a survivor She is young like you and had to have her whole tongue taken yet she can eat, swallow and talk - albeit after working hard at her therapy. You can do this. Print out this article though and show it to your doctors to see what they think about the new procedure for a thinner flap that Kate's doctors used. If an senior citizen like myself can bounce back, you can and will also. Still this sucks big time and is so unfair. Last but not least, here is an excerpt from the American Cancer Society about cancer coming back that I found comforting [quote]Could I have done something to prevent the recurrence? Although eating right, exercising, and seeing your doctor for follow-up visits are important, please understand that there probably was nothing you could do to keep your cancer from coming back. Many patients blame themselves for missing a doctor visit, not eating right, or putting off a CT scan for a family vacation. But even if you do everything just right, the cancer might still come back. [/quote] Here's a link to the complete series of articles on recurrence When your cancer comes back Keep the Faith Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Nate - So sorry about the Crap Luck! But you are a fighter and you can beat this! You are in excellent hands with your team of doctors and with your OCF friends, here. Great post by Charm and terrific article on Kate Brown. I've saved her article, too. Sounds like her doctors were on top of things with the latest treatment. Stay cool and stay in the fight mode and let us know how things go. Sending positive vibes your way.
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: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Nate: So sorry about your recurrence - it sucks! BUT, one of the biggest things you have going for you is your AGE. You will be so much better able to handle just about anything they do in surgery and afterwards. I'm sending a prayer your way and it'll stay with you during surgery and afterwards because I care. You are a strong person - probably just don't realize. I admire how you wouldn't stop being "suspicious" and insisted on being re-checked. Sometimes we have to fight for what our inner feelings are because we know our bodies better than anyone. Good luck and keep posting. Other posters have given you wonderful responses and advice. They're A+ in my book. Hugs from julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 595 | Sorry about this, hope all goes well for you,,, keep up the good fight in this war!! Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2010 Posts: 531 | Well you came back on here Nate that's cool. You know we all here will pump you up and keep you positive as you move on to the next round to battle this crap. On a lighter side you and my son have the same birthday! I may have already told you that but hey I'll mention again just to be sure. Virgo's rock baby!! We are a tough breed, my birthday is the 18th too!! So you can do this and we are all here to help answer any questions you have and you will get it straight up honest no sugar coating here so you will know what to expect. But you can do this look at all the folks here who have that are on here. Keep us posted, it's going to probably be a very long surgery so make sure your family knows to try and get some rest the night before and bring books, laptops/netbooks munchies, drinks and money to buy food if needed and be ready for a long day. Ron's surgeries both were early morning first one had to be there 630am this last one 530am! ya that sucked but his last surgery went fast and was done in 7 hours or so. And he didn't want us or anybody to come and see him afterwards cuz of course you are asleep still and probably will be until the next morning, that's when I went to visit him. He said don't come when I'm not awake. So if it is going to be like that for you a long day I'd suggest after you get done and all clear you are in recovery to have your family or whoever is there go home. Ron wanted me to go home after I dropped him off! Ya ok NO! We lived to far and our hospital supplied 1 person with a pager to update what was going on in the surgery, that was pretty cool. Well good luck keep us posted and keep that head up! You'll be able to talk, don't you worry!
CG to Ron Out of Pain 4/3/13 4/12-lung and under chin growth no treatment 1/13/12 lung biopsy 6/11 recur 6/30 resection #2 Clear margins Clear 12/10 Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out RAD 30 8/10 DX 4/2/10 "Oral Cavity" T3NOMO 12/28/07 Non Hodg Lymph remission 7/08 passed away 4.3.15, RIP Ron, you are greatly missed
| | | | 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 | Tell them to hit you with their best shot!! I agree, you have your age and general good physical health which will help you recover well.
In your writing I heard some regret about smoking/drinking. I agree with your doctors - at your age it would be hard to pin this disease on those factors. I think it is important for your treatment for you to LET GO of the idea of "why this happened". You cannot blame yourself. You did nothing different than any one of millions of 20 somethings I have known. Let that go.
Hugs, and we are here for you if you have questions.
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 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2008 Posts: 711 | Sorry to hear that it is once again time to gear up for battle. Something I think we all fear. Knock it down for the count.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer. And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer. May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2009 Posts: 329 | Nate,
I've been following your posts. I'm sorry it came back, but my thinking is it didn't show up on a CT Scan it might be in the very early stages, hopefully. It's scary to think you had a CT Scan and the next week it's back. This really sucks big time.
I have my CT Scan Sept 22nd very scared to have the scan for fear it's back. I'm like you I look in the mirror every time I pass one.
You're in my thoughts and prayers keep on posting.
Connie
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2. Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | So sorry it came back. Your story of recurrence sounds like mine. I also had a clear scan in July of 09 and began to have symptoms in August of 09. Was told in October after biopsy that it was back. Glad you were diligent about seeing the changes. As that is how I knew something was wrong. I still obsess about my mouth and see changes. My ENT is always right on top of it. I pray that it is really early and no other involvement.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Hi, Nate,
I, too, am so sorry that you have to do this again. You have gotten great advice from the others. Good for you in staying true to yourself, and being persistent with the changes you noticed. You are not a bury-your-head-in-the-sand-kind of guy. Thanks for posting the details, too. I send you my very best as you prepare for your next surgery.
Anita
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: Aug 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Aug 2009 Posts: 207 | Hi Nate...if it's any concellation [spelling], there is a bloke somewhere in Oz, that had oral cancer, lost most of his tongue, had a rebuild, was a singer, and ended up on the X Factor 2 years ago or last year, sang like....unimaginable.....so please don't give up hope and stay strong - and you might have gotten thrush from the meds, not necessarily your fiancee or dog.....bu hafe faith & hope and stay as strong as you can....love ya mate xoxoxo ps...let them get rid of the 'c', and keep singing xoxo
Last edited by Jeanna F; 08-25-2011 10:39 PM. Reason: spelling
Jeanna Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
| | | | 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 | Nate, I am happy to see you back on the forum! Im glad the link helped you!!! I had sent him the link to Kate's story about living productively after having a glossectomy. It really was an inspiring story of hope.
Please dont beat yourself up as to why you are going thru this again. It wont help at all. Doctors really dont know a definite answer to why most of us got this horrible disease. Just put that aside and get yourself prepared for another battle. Ive done it 3 times so I am living proof that a recurrence can be beaten. Its not easy but you already know some things so you are ahead of the game. You know what questions to ask and all the terminology.
Your medical team sounds like they are excellent doctors. Im glad you are comfortable with them and you trust their judgment. If you will get a trach, ask for a possey muir valve so you will be able to talk with it. I know it may be difficult to understand for a while, but at least this will help make it easier for you. Tell everyone, your doctors and also all the staff when you go for your consult and the day of the surgery. I wasnt sure who to ask so I just told every single person who came to see me and it worked.
We are all right here in your corner rooting you on. You will get thru this!!!! Sure it stinks, big time but you already know that. Hang in there Nate!!!!! 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: May 2011 Posts: 287 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2011 Posts: 287 | Hi Nate, your story is not too different from my father's. He had a nodal mass showing up after 2 years and that when docs told him that he is doing well and follow-ups needs to be half-yearly.
Wish you luck with the treatment.
Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009] TX:Nodal Mets; 3xDCF[2011/05/05] TX: RND + PMMC Flap[2011/07/11] DX:SCC PNI+ECE TX:Re-RT 60Gy[2011/09/21] TX:Gefitinib 250mg[2011/12/18]
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | Nate, Sorry to see that the monster is again stalking you. You took the right actions. I join the others here in praying for a good outcome for you. 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: 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 | Nate has asked me to provide an update regarding his recurrence.
Right now he is facing a 15 hour operation on Tuesday Sept 20th. Nate will have a 1cm tumor removed from his tongue. At this time I do not know if he will be getting a free flap or trach. As I find out info I will relay it to Nate's OCF friends. 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: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2007 Posts: 790 | Hey Nate, So sorry to hear about they recurrance. DAMN it... I thought you were all in the clear. Well I had the surgery you are about to have. Its been a long road and a process but my life today is great. I am pretty intelligable and I eat most food, have the occasional adult beverage. Things are good. It was tough but you can do it. Here is my story. http://www.ucsfhealth.org/patients/brown_kate/Hang in there buddy. I'm pulling for you! KATE
Tongue Cancer T2 N0 M0 / Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007 Surviving!!!
| | | | 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 | Agreed - Christine - tell him we're all here for support!
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
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Hi, Christine - please add my best wishes as well!
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | 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 | If anyone would like to send Nate a get well or motivational card, please PM me for his mailing address. 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: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 |
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started.
| | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2010 Posts: 531 | Yes so was I looking at the calendar. He is scheduled tomorrow for surgery correct?
CG to Ron Out of Pain 4/3/13 4/12-lung and under chin growth no treatment 1/13/12 lung biopsy 6/11 recur 6/30 resection #2 Clear margins Clear 12/10 Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out RAD 30 8/10 DX 4/2/10 "Oral Cavity" T3NOMO 12/28/07 Non Hodg Lymph remission 7/08 passed away 4.3.15, RIP Ron, you are greatly missed
| | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2009 Posts: 329 | Nate,
Hanging in there your in my thoughts and a special prayer for you tonight.
Take care, Connie
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2. Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | 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 | Best wishes for the surgery Nate. Loved the pics from the Tongue Trasher war on Cancer concert. Especially loved the dedication to Samantha. Thinking of you till we hear you are done and on the road to recovery. Love 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: 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 | Ive been in contact with Nate. Tomorrow is his surgery. It sounds like it will be a rough one. It will be a long surgery, 15 hours. His docs are anticipating a 2 week hospital stay with a feeding tube and trach. I know we are all pulling for our pal Nate to get thru this recurrence and move on with his life.
On a happier note, Nate put on a concert last Saturday to benefit OCF. He dedicated it to Samantha Kemper who recently lost her battle with oral cancer at just 23 years old. Nate threw it together with only a few weeks to organize the entire event. There were several bands playing, including Nate's. They even had a pro skate boarder Guru Khalsa there who donated a signed skateboard deck to be auctioned off. Nate's event was a success, it raised $500 for OCF. Thank you Nate!!!!!
When I am notified, I will post an update.
Last edited by ChristineB; 09-19-2011 07:44 PM.
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: May 2011 Posts: 287 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2011 Posts: 287 | Yes Christine, probably the surgery will be more radical considering the recurrence and that he completed his radiation just 9 months ago.
Nate, my best wishes to you. I am hopeful that you will have a successful surgery and speedy recovery. Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009] TX:Nodal Mets; 3xDCF[2011/05/05] TX: RND + PMMC Flap[2011/07/11] DX:SCC PNI+ECE TX:Re-RT 60Gy[2011/09/21] TX:Gefitinib 250mg[2011/12/18]
| | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Thanks, Christine. Nate, just sent a prayer your way and wish you success. Hugs from julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Thinking of you. Best wishes for a successful surgery.
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | Hi Nate, Sending thoughts and prayers that your surgery goes better than expected, that you are well-cared for during and after surgery, and that you have a speedy recovery. We'll all be here when you need us. Make sure to keep us posted on your recovery when you can.
Sandy
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | Nate, Fight like hell. I hope the early days in the hospital are a blur so you don't feel/remember the pain. There's too much pain to deal with when all of the "healing" is done. I'm so sorry you're going through this. PLEASE continue to be your own advocate and press the docs when you need to press. You are not crazy, you are taking care of yourself and trying to stay alive. It's time for some well-deserved good luck and smooth sailing. I am agnostic and don't pray, but I have faith in family, friends, the good people in the OCF forum, and the best medical practitioners in the world. I hope things go as well as they possibly can and that you pull through without a hitch. I look forward to see here again, soon. Be well, my friend. Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11) SCC L oral tongue (no risk factors) L partial gloss/MND 3/28/11 @ 25 wks preg T1-2N0M0; no rads/chemo Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-) Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx. Various scans since rx ended are NED! Part of genetic study for rare cancers @ MGH. 44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2010 Posts: 531 | May your surgery go smoothly today, and the surgeons hands be quick and precise, may they take away the cancer and give you clear margins and leave you cancer free. Rest yourself up afterwards, keep a positive attitude, be strong and hard willed to fight this damn disease and Win so you may have many years of fun and laughter with your Lady and your Pets and more days of jamming on your guitar with all your friends! May God Bless you Nate and I will be thinking about you all day long until I hear that you are out and on the road to recovery. Keep up the fight my man! It will be a long hard road but you can do it! Your fellow Virgo cuz Virgo rules!!! Sue
CG to Ron Out of Pain 4/3/13 4/12-lung and under chin growth no treatment 1/13/12 lung biopsy 6/11 recur 6/30 resection #2 Clear margins Clear 12/10 Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out RAD 30 8/10 DX 4/2/10 "Oral Cavity" T3NOMO 12/28/07 Non Hodg Lymph remission 7/08 passed away 4.3.15, RIP Ron, you are greatly missed
| | | | 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 | Nate... saying a prayer for you today... may they get it all and may you recover quickly~ ;o)
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
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Saying a prayer for Nate today
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | 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 | No detailed info yet. Just know that Nate's surgery was a success. Congrats Nate! 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: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2007 Posts: 790 | Nate! So thrilled to hear that your surgery was a success. Hoping that your hospital stay goes OK and that you are comfortable.
Praying for you and hoping that this is gone from your body forever more!
Big Hugs to you and a high five from me on getting through one of the toughest surgeries you could ever endure. I know first hand!
KATE
Tongue Cancer T2 N0 M0 / Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007 Surviving!!!
| | | | Joined: Apr 2011 Posts: 131 "OCF across the pond" Senior Member (100+ posts) | "OCF across the pond" Senior Member (100+ posts) Joined: Apr 2011 Posts: 131 | Big hugs and prayers for a full recovery Nate! You will get there all of us are willing you to! Jayne xx
Scc nasal cavity /hard palate Surgery removal of septum and roof of mouth 15/3/11 cl margins Rt and cisplatin 6 weeks starting 24/5/11 Obturator
Age 45
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | Nate,
From another OCF friend I send congratulations on successful surgery. Praying for your speedy and complete recovery.
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: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | WONDERFUL NEWS, NATE. I AM VERY HAPPY FOR YOUR SUCCESSFUL SURGERY AND HOPE YOUR HEALING GOES WELL. SEND US AN UPDATE WHEN YOU CAN. AGAIN, CONGRATULATIONS! julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | Great to hear, Nate. Been praying for you!!! Best wishes on a speedy recovery..... Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | 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 | Dear Nate, I know you are probably a way off posting yourself but I am happy to hear that the surgery went well. Best wishes for a quick recovery and you know where to go if you have any questions or issues that you need answers to. We are here for you. Love 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: Sep 2010 Posts: 179 "OCF Down Under" Senior Member (100+ posts) | "OCF Down Under" Senior Member (100+ posts) Joined: Sep 2010 Posts: 179 | Hi Nate,
Been thinking of you and hoping the best for you. So happy to hear surgery was successful. Sending lots of good vibes and best wishes for a speedy recovery.
Minh
35 Yrs old 03/10 SCC T1-T2 Partial Glossectemy end March - margins not clear enough. While waiting for resection - cancer returned,2 new cancerous lumps Re-section End May & flap from cheek attatched. Margins clear. Mid June - 4 teeth out Mid July -32 Rads and 3 Cisplatin 6th Sept 10 Finished Treatment!!
| | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2009 Posts: 329 | Nate,
I've been thinking about you. Thank you for the update Christine.
Your in my prayers and thoughts.
Best Wishes, Connie
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2. Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | 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 | Here is the latest update on our friend Nate.....
[quote]He is doing so well!!! Can you believe it?? He looks way better than we expected and even mouthing words. His face is of course very swollen, especially on the left. They took 3 teeth too. His tongue looks good, swollen alot, but pink and the bloodflow to the transplant has been good. He's made some funny jokes and can write too. His left hand already has full mobility. He smiles too, it's mostly in his eyes. His color is excellent.[/quote]
Last edited by ChristineB; 09-23-2011 11:14 AM.
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: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | Thank you so much Christine for the great update!
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Thank you Christine. When you have contact with him, please tell him we are all thinking and praying for him and a successful recovery. It sounds like he's doing great. Big hug from julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | 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 | Thanks for the update Christine. 5 years ago I was were Nate is today and you know I am doing just fine Best wishes for a speedy recovery. Looking forward to the first post here. xoxo 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: 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 | Thanks Christine - that's awesome!
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
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Such great news! So-o-o-o glad Nate is doing so well! Thanks, Christine.
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: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2010 Posts: 531 | Cool, I didn't get a chance to check up on him this weekend but my thoughts were with him. Glad to hear he is doing good, never doubt he wouldn't! He's a tough young man! Keep us posted Christine, I check up on FB but I think I need to get his girlfriend if she is on there as my friend. I was wondering where they took the flap from, guess his arm/wrist?
CG to Ron Out of Pain 4/3/13 4/12-lung and under chin growth no treatment 1/13/12 lung biopsy 6/11 recur 6/30 resection #2 Clear margins Clear 12/10 Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out RAD 30 8/10 DX 4/2/10 "Oral Cavity" T3NOMO 12/28/07 Non Hodg Lymph remission 7/08 passed away 4.3.15, RIP Ron, you are greatly missed
| | | | 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 | Nate said it was planned to take the flap from his wrist area. Not sure if it happened like that or not. Here is Nate's latest update from his facebook post....
Moving to a step down room away from all the havoc tonight. Got another jp drain removed, one more to go. Doctor seems confident he snagged it all and should know results this week. PEG tube and speech therapy with PT tomorrow! Wait til they get a load of me!...Nate
Looks like our Nate is doing wonderful!!!! He has a terrific attitude and still has that great sense of humor.
Nate's concert last week raised $500 for OCF. Way to go Nate!!!!!
Last edited by ChristineB; 09-26-2011 03:23 PM.
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: 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 | Thanks Christine...I am presuming yes to the flap as I saw this in an earlier update. "His left hand already has full mobility".
So wonderful that Nate is doing so well and about to get rid of that last drain. Remember that feeling of freedom well!! Looks like he is making excellent progress and look forward to getting some of that humour and attitude here on OCF when he is posting again. 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: 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 | You are correct, Gabe! I didnt remember, sorry. 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 | Yeah!! Glad he's doing well!!
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
| | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2010 Posts: 531 | ya I got his FB too and I guess I read it too fast didn't see that and yes soooo glad he is feeling this good so fast I hope he continues with the speedy recovery!!
CG to Ron Out of Pain 4/3/13 4/12-lung and under chin growth no treatment 1/13/12 lung biopsy 6/11 recur 6/30 resection #2 Clear margins Clear 12/10 Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out RAD 30 8/10 DX 4/2/10 "Oral Cavity" T3NOMO 12/28/07 Non Hodg Lymph remission 7/08 passed away 4.3.15, RIP Ron, you are greatly missed
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