| | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Amen to all the words spoken here for you Nate. Nothing I can add. Just the best to you.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Aug 2010 Posts: 157 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Aug 2010 Posts: 157 | Ok everyone, headed into Radiation #9 today...Over the weekend have experienced some gum tightness, not necessarily jaw tightness. Hard to explain, the best way is when I open or stretch my jaw it feels like my gums are being ripped around my teeth, especially the back. Other than that I am still doing ok, hoping to see the light soon, They say thy are gonna double me up next week and I dont know if thats a good or bad thing but its because of thanksgiving. Anyway, Trying my best....ttyl
Nate
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: 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 | Glad to hear you are hanging in there. Please dont forget to keep stretching your mouth open wide several times per day. It will help you to avoid getting trismus which is where you cant open your mouth. I have it and its awful!!!!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Nate,
Not sure what you mean by "hoping to see the light soon" as you are only on rad #9. The vast majority of us don't "see the light" or as we say "walk out of the tunnel" until week 3 POST Tx so just be prepared as it may/will get worse from now on until some weeks post Tx.
Also re the double up, they are probably going to do a 2 a day in leu of missing Turkey Day. We all receive about 70 gys over the course of 35 rad sessions or 2 gys a day so if you are going to miss a day they may just hit you twice the day before but they won't exceed the 70 to 72 gys over the whole treatment period. Some get 5 treatments a week for 7 weeks and some get 4 treatments a week with a double on Friday for 6 weeks. Either way we all get about the same amount of radiation.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Just saw your video #17 and it looks like you are doing ok, Nate. Glad to see your post, too! Keep up the good work and the good spirits. Stretch your mouth like Christine says. Maybe you could recite some poems while stretching your mouth? Or lyrics to your favorite songs? Or some Jamey Jasta? That would be nice on a video!
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: Dec 2007 Posts: 24 Member | | Member
Joined: Dec 2007 Posts: 24 | Nathan,
I just watched at a few of your videos tonight. It appears that you have stopped making them altogether for now. I am sure that you are just not feeling up to doing anything, even playing a song... That was a really nice way to communicate when you weren't able to speak.
My husband went through the same kind of radiation seven years ago and I can imagine what you are going through. You are now into the really rough part of treatment and it continues to get worse until a few weeks after radiation ends. It may be hard to believe now, but it really does get better. You just need to hold on a little while longer.
The one piece of advice that I would like to share with you at this point is to be sure that there is someone with you at all times until you are no longer going down the slope, but are starting to head back up. It is a safety issue, as well as a suppport and comfort issue.
My best wishes and prayers are with you as you finish this difficult period.
Anne | | | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2010 Posts: 531 | he's not on here anymmore...he sent a message he was done with this site.
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: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | What a shame he has left this site. I just hope it's because he has been given the all clear and no other reason.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Sep 2010 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2010 Posts: 71 | There is still family reading the site for info...he is just going through a really bad time and needed to pull away. Hopefully when he is headed back into the light for real he will come back on and let us know how he is. He had to get a PEG and needed it installed twice, bad mucous, etc. so he is having a really hard time. Not an excuse, just an explanation. :o)
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
| | |
| Forums23 Topics18,170 Posts196,930 Members13,105 | | Most Online458
Jan 16th, 2020 | | |
|
