| | Joined: Sep 2010 Posts: 71 Supporting Member (50+ posts) |  Supporting Member (50+ posts)
Joined: Sep 2010 Posts: 71 | The earache is referred pain...I have it too. Can't really tell you from what but it is on the side of the cancer - the side I used to chew on - but don't any more.
Hope you do fine with the mask and simulation. I do my simulation tomorrow so you will have to fill me in on it! The mask making was much less scary than I thought it would be...but a little wet!
Can't wait to hear the new video tonight with all the news of the day!
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: Dec 2006 Posts: 147 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2006 Posts: 147 | Nate,
What part of Texas are you in and where are you being treated? I'm in the DFW area.
Paula
Caregiver to Husband 50 yrs.young-non smoker/non-drinker; Stage IV - all treatments stopped August 2009
Lost the battle November 23, 2010
| | | | | 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=Lfm69TtMC3gThere is my recent update! So far so good...I still do not understand what referred pain means but the doc said it could be that or that I am over achieving on my jaw excercise lol. Anyway, I really do hope my videos help because they have really helped me deal with this. But anyways, I wont ramble here for my video is long enough! lol...talk to you guys tomorrow, If any of you want to find me on fb pm ok? 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 2010 Posts: 157 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Aug 2010 Posts: 157 | I am in Houston, I am currently being treated at LBJ and Spring Branch. Got MD Anderson doctors, just not all the perks that come with the hospital like comfortable chairs, waiting areas, coffee, blah blah blah etc etc. To me that is the only difference
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:
The referred pain you elude to is what I was speaking of the other night about the ear ache and mis-diagnosis due to the pain being so intense in the floor of mouth/tongue the pain was resonating to my ear (Sounds as though Michele57 is experiencing as well)! Your body will rearrange things it can't handle (In so many words). Been thinking about you today. Chin up and keep pushin" on! You will be fine.
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: Oct 2006 Posts: 383 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Oct 2006 Posts: 383 | Nathan:
Just watched your update. Great Job (You Too Michele) with the mask making! You both will breeze through this. Keep the updates coming.
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=rdoiwlmQsa8UPDATE!! Love you guys, hope simulation went well today Michele!! It was not too bad for me! 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 | Good luck tomorrow Nathan! I am having my first radiation...I think you were doing Chemo? but I don't remember for sure.
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: Aug 2010 Posts: 157 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Aug 2010 Posts: 157 | Yep, I go in for blood work and all the other fun stuff tomorrow...I am getting the 3 rounds of Cisplatin, 1st one on tuesday. And 35 rads I believe is what they said, but those jerks have yet to call back, so I will know all the facts in the morning. Good Luck to you to! I got my calendar ready! Ready to mark some days off!
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 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,
Very common for you to to get your first chemo in the am and your first rad in the pm of the same day. Then after 3 weeks your second chemo (again usually in the am with rad to follow) and your last chemo will be the last day of your rad assuming you get all 3 as many stop after 2 due to various treatment issues. 35 rads is also common which usually works out to 2 gys a day, total 70, 5 days a week for 7 weeks. Exactly what I had.
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.
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