| | Joined: Aug 2010 Posts: 157 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Aug 2010 Posts: 157 | Hi all,
I just wanted to say as most of you know how hard emotionally it has been on me the last few days but you always seem to pick me back up. Look, for anyone interested in really knowing me as a person and just putting a face and voice to my posts I have decided to do a daily video blog each and every day. Well, at least until I just cannot anymore but I have found a sense of determenation there feeling I may be able to help the younger group of OC patients, but any way just look up " Cancer Fight Log " and I should pop up every day : ). Just letting my bestest buds in the world know!
EVERY LASTING SCAR-Hard rain pours down on the concrete, Seeps in deep below. Cold screams of the city are heard through the walls Of every home. Most seek for a deeper meaning,Beyond their daily woes most see nothing more than black clouds, its all they know. We become our scars if we let them, But all that we truly need is out there for the taking. We scream every word, its brought us all together. Every lasting scar reminds us how we got here, we scream every word but its brought us together. Every lasting scar shows what its taken to be who we are.
Some dwell into emptiness, the hurt they claim is real,been let down now its meaningless,they find ways to conceal. Never to be seen again until its all too late and if we do not learn from it all well repeat the same mistakes. We scream every word, and its brought us all together. Every lasting scar shows us what its taken to be who we are.- Jamey Jasta
Your Friend,
Nathan
Last edited by Nate82; 10-19-2010 06:34 PM.
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: Apr 2010 Posts: 201 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Apr 2010 Posts: 201 | Holy cow Nathan!! You look amazing for surgery such a short time ago and your speech is
So good!! I am amazed at your progress and find it hard to believe that you wont pull through rads fairly well. Thanks for the post and video.
Last edited by Susan3175; 10-19-2010 07:01 PM.
CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads
1/10/2011 Clear PET!!!
| | | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 | Hi, Nathan -
The Jamey Jasta quote is great, and you will learn that you *are* more than the scar.
Good Luck with your video log and your journey. We're all pulling for you.
Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Your look and sound good. Your a fighter, you will get through this!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: May 2010 Posts: 135 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2010 Posts: 135 | What a wonderful idea! I have to agree that you look and sound amazing after the recent trip through hell with the surgery. I think about you so often and delighted to see the progress you've made.
Your friend in NC
Dodie
Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
| | | | | Joined: Oct 2010 Posts: 4 Member | | Member
Joined: Oct 2010 Posts: 4 | I think it is great that you are doing this blog. It is a way to cope and express yourself, as well as practicing your muscles and speech for a full recovery. I wish you the best. Keep your head up and know that you have a great support system! | | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Nathan - You are amazing! The video is great and I love the Jamey Jasta quote. What a great way to express what is really happening, to help others, spread the word about OCF and to help yourself as well. You remind me so much of my son and the fight that he had to get through that dark tunnel to where he is today! We are with you, Nathan - keep up the good fight! You can do it!
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Nate I'm not in the young crowd demographic you mentioned you are trying to help. I'm certainly to old to wear a baseball cap backwards (Actually I don't even wear baseball hats anymore, but Australian Outback type hats). What type of surgery did you have, since you look really unscathed in the video? although I started off clean shaven, I did end up with a beard like yours since I couldn't shave during the radiation. The month after TX, all the skin on my face gradually fell or peeled off removing the beard but I'm pretty sure that was a result of the Erbitux chemo. Just a heads up that depending on the field of your radiation, future beards may be at risk. I sport a nice handlebar mustache now, but the lower half of my jaw & chin is perfectly smooth and hairless forever. Just another joy of radiation, the gift that keeps on giving. Sorry to hear that most of your friends "bailed out on you", but that's pretty common. You have the right attitude to win this. 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: Sep 2009 Posts: 177 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 177 | Nathon, You are amazing! thanks for sharing that with us!! You look great and sound great! I am sorry if you feel like your friends have bailed. I know that I shut my friends out when I was at my worst. I had a few people that intercepted and I just basically hid out. I guess we just get through it the best we can, wether we are the patient or the friend. I know when I was younger I had such a hard time with hospitals and stuff. I just didn't know how to respond. It wasn't that I didn't care. I am getting better as I get older. I will be on the look out for your utube updates. Try to let us know when you update it.
Wendy
46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear
| | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | Nate,
Great video you look good and your speech is wonderful it's much better than mine. I was told it's because I talk too fast:)
Everything will work out in the long run right now your down and out. We've all been there, hang in there before you know it this will be all behind you.
You remind me of my son when he was in his twenties in fact you kinda look like him, took me back for a second.
Take care and keep us posted.
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 2010 Posts: 157 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Aug 2010 Posts: 157 | http://www.youtube.com/watch?v=MZAm0kwcEiEUPDATE! Sorry again for either slurring or sounding numb again, I took some relxing stuff before the trip to the doc to stay calm. But I know we officially start chemo Nov. 2 and Radiation possibly next week or Nov. 1 I really cant remember which one at the moment, my mom has all the dates. @ CHARM- I had I guess what they call a partial glossectomy of the left lateral tongue and neck dissection on the same side. Removed 49 nodes and 2 were positive. Just now at the last leg we hope... Your friend, Nathan P.S.-I turned my hat back around charm, I heard it makes you think backwards so we will think forward : )
Last edited by Nate82; 10-20-2010 11:21 AM.
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: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Wow, Nathan, you look great and your speech is very clear! Count me as one of your supporters. Good luck with your appointment tomorrow.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Nathan I like the new look. But then I've always been a Woody Woodpecker fan. Sorry to hear you are HPV negative as it turns out that HPV positive cancers are usually easier to treat. You may want to ask you doctors about what HPV test they used as my CCC first told me I was negative but a more sensitive test showed me positive. Here's a link to an HPV thread here, jump to page 4 for discussion of HPV tests HPV =OCF posts Finally, in your list of meds, I did not hear any pain pills. You want to be sure to get them BEFORE TX starts. Most of us started off on Percocet and went up to Fentanyl (china doll on the street) patches. I found it much easier to get my narcotic prescriptions filled at the hospital instead of the local pharmacy where they acted like I was a drug addict instead of a Stage IV cancer patient. I am amazed at how clear your speech is after a partial glossectomy, if that is any indication of how you recover, you could very well be one of the few here who sail right through this treatment. I hope so 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: 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 | Nathan,
Eat your favorite stuff until you can't eat any more.
Keep up the good attitude.
Usually, at least it used to be the norm is to have your first chemo the same am before your first rad. my first day started at 7am in the chemo dept and I left Moffitt's rad dept at 5:30pm. Tack on an hour drive each way and both my wife and I were mentally exhausted to say the least.
Be prepared to feel trapped when you are "strapped" down to the table the first time with your mask. I wasn't expecting it and I could feel my heart beating for a few minutes. Some have to take a calming pill to get through each Tx so just be prepared.
I hope you have already started using the fluoride trays. If not please get them ASAP. I still use mine and I hope never to have any post Tx teeth problems.
If you are going to feel the effects of the combined chemo and rad don't be surprised if they don't start until after the 2nd bag of chemo (assuming you are getting the 3 big bags vs the 6 smaller ones) or about your 4th week of rad. You may feel the nasty effects sooner or never but most of us fall into that scenario I just mentioned.
Oh and tell someone where that cig is and let them get rid of it. Bluntly speaking we have NEVER (as in NEVER EVER NEVER) had someone on this site during my 4 plus years and perhaps thousands of patients that smoked either during or post Tx to live. If you want I will share a post written by the wife of a patient who wouldn't quit who described his death in a way that will make you cringe and cry at the same time.
Good luck and we will be there with you forever.
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: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Nathan,
Just thought of something--I think your holding on to that one cigarette is a metaphor for wanting to have your life back to the way it was before cancer. Flush that thing down the toilet! Your life is now on a different course. You can't hold onto the past. It's a myth, and none of us can do that. All the best as you move forward.
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: 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, your video was great. Your speech is very very good. If you hadnt told us what you went thru I would never have believed it.
Technology is amazing. Hope you keep the video blog going.
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: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Nate,
I have been following your journey and praying for you. Now that yoy have a date for the rad and chemo I hope you are more hopeful of a good recovery. Your videos are a wonderful way for you to cope and hopefully will encourage others to be more careful in how they live their lives.
As a soccer player who can play without time outs you certainly have developed a lot of stamina. May it carry you through to a complete recovery. You know the value of a team and can rely on not only your doctor teammates but also on your OCF fans who are cheering you on.
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Another great video, Nate! Thanks for sharing your progress. I know it's going to help a lot of people. Please, please, please, as Davidcpa suggests, have someone get rid of that last cigarette. I can still remember so well the post he refers to by the wife of a smoker who died. It really did make me cringe and cry big tears. You can substitute other stuff like eat all your favorite foods or do something else you enjoy. I've also heard of the "SSS" system of quitting smoking - it's whenever you feel like smoking, you just substitute sex instead. I'm just saying, whatever works!
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: Aug 2010 Posts: 157 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Aug 2010 Posts: 157 | http://www.youtube.com/watch?v=HzO-0i9ifG4Updated!!! Just remember, this is all out of my element and as raw as can be. I do not believe in editing or a second take, what ya see is what ya get. What comes out of me is me, I hope you enjoy and hopefully I can continue this as long as possible if not all the way through treatment even if talking gets difficult and videos get shorter. Thanks Friends! Your Buddy, Nathan Become the fuse, behold the power of redemption!
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: Oct 2006 Posts: 383 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Oct 2006 Posts: 383 | Nathan:
Great Stuff (Hate to say it but it's real so your making the best of it with your commentary). The mask makes great halloween decor, keep it, you'll have it for next Halloween! I have 2. Due to weight loss was blessed with a second one so I can double my fun this time of year. Great to hear you flushed that last "Hanger on." I've seen some become road kill (If you know what I mean, one night after driving 4 hours by myself to spend a half hour with my Brother and share my news of a different life with him face to face). Great concert, eh? Keep enjoying those things. They help keep you mobile and thinking forward. David is right about the table. I took a trial run and did great, then the first "Real deal day" I lost it going in and had to come out. I took a deep breath, said this was part of the deal, strapped down & went back in, and never missed another beat for 35 treatments. YOU WILL DO THIS, AND BE A WINNER. It's already written. If the speech gets difficult make silent movies (My Wife and Kids bought me a wipe off board) but keep the vids coming my friend!
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | I'm so glad you are doing this, Nathan! - If you have to go to silent movies that's ok, just keep the videos coming. My son used a lot of his own kind of sign language. For the Rad room, they had CD's to play for the patients and would take requests, or patients could bring their own CD's. Maybe you could bring some of your own favorite music?? For communication, my son would use a lap top and type in really big letters so that when he turned it around it could be read by anyone present. When I was teaching at the univ., there was a projector attached to my laptop and I could project anything on the wall behind me, that I wanted students to see. Just another way to communicate on video. Keep us updated!
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: Aug 2010 Posts: 157 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Aug 2010 Posts: 157 | http://www.youtube.com/watch?v=EQnBJMwSCf8There is the next update my friends...sorry for almost losing it yesterday but like our OCF friend said that I was holding on to my past it hit me like a book to the face. I sat in front of that toilet and cursed that damned thing, spit on it and through it down the toilet then cried for a while. Thank you all for being so supportive of this, like I said this is unlike me big time. It is a true blessing I even found the urge to do this... Your Friend, Nathan
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: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Nate,
You are doing well. Your speech is phenomenal. You r lookin' good.
The radiation and chemo didn't get bad for me til the bitter end...
I just felt wiped out and had some rough days w some of the side effects. All in all it wasn't as bad as I had imagined. Don't let the impending treatments weigh you down. Hope you sail on through.
K
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Oct 2006 Posts: 383 | Nate:
Great stuff (Once again). The entire waiting, wondering, experimentation thing was like my personal internal video on repeat. AMAZING..... I'll fill you in sometime on that entire ordeal (An ENT telling me I had swimmers ear (Found out it was referred pain), a negative biopsy, Like you said, digging around and pissin' it off), but right now it's about you Buddy. Keep the vids coming! A lot of us lived it and understand it and you will too, soon......
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 2010 Posts: 157 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Aug 2010 Posts: 157 | http://www.youtube.com/watch?v=FQ9dqq28iSUNew update friends!! Its the weekend, I also finally joined FaceBook, sheesh I am doing things I truly despised just 4 months ago. Hell, I still listen to records and cassette tapes now I am all involved in the social network when I was so anti-social lol. Your Friend, Nathan
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: Sep 2010 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2010 Posts: 71 | Glad to hear some good reports about radiation - I start Thursday (10/28) and am scared silly about the pain, being able to swallow, eat/drink, etc. I am going to try to get through without a feeding tube - will see how that goes but I am going to give it my best shot.
Michele in IL | | | | | Joined: Aug 2010 Posts: 157 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Aug 2010 Posts: 157 | Keep up with me Michele, we can walk this journey at exactly the same time. I hope we can become friends and that my awkward videos do some good lol. If you want to I will be right there with you every step of the way, sounds like my mask is being done tuesday and theyve already got my mouth guard made from my impressions. Shall we dance?
Your Friend,
Nathan
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 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 of luck to both of you for the upcoming radiation.
Great that you are able to "dance" together.
I have seen your video clips Nathan and you sound so good plus I love your attitude and sense of humour at what must be a difficult time.
Now that you are not going to be anti-social anymore you may not know that on the Friends forum there is a topic called Facebook.
ChristineB keeps the list updated with the names of those that wish to be included. Without counting there must be over 30 of us now.
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 | Nate, if you would like to be added to the FB list, please let me know. I dont add anyone unless they request to be part of the list.
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 2008 Posts: 357 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 | You've become like one of my kids, Nate. ((((hug))))
Glad you threw away the cig. I carried a pack around for 3 months before I threw it away. But then, I had time - I didn't have an event staring me in the face.
Your great attitude will get you through this.
Take care -
Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | | Joined: Sep 2010 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2010 Posts: 71 | We will get through this together. I guess it will be like a dance! I was very glad I didn't have to do the radial arm flap but it seems like you have come through it very well. You really sound about like me with my partial loss of tongue on the left. I have a mask and mouthpiece - sat under it about an hour last week - NOT by choice! Wed. simulation should be SO simple after that! LOL
Glad we both have family support and we are sure we are going to get through this. We WILL come out the other side stronger and healthier. Yes, we shall dance!
Michele in IL
Female - 53 no smoke/drink
tongue Biopsy 8/2010
Surgery 9/21 for SCC left side tongue stage II. Prtl removal tongue/left side lymph nodes. All Clear
Radiation started 11/2, ended 12/17
Lymph node involved left side along with gum involvement 2/9 Fibular flap failed 2/22.
passed away 1/12/12
| | | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2010 Posts: 531 | i love your videos! keep them coming you are truly an inspiration and you will be just fine! just make sure you follow the doctors orders that will help if you do have any issues during/following radiation and chemo. Especially the radiation. Do the mouth rinses and do the soaks for you neck if you need them ALSO, I bought my boyfriend this stuff called Juven. I have a whole box never used AND maybe a couple packets of another box only used. He wouldn't drink it. Look it up if they haven't already given you any AND if you can't get it down there let me know, I will send it to you!!
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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