| | Joined: Nov 2009 Posts: 33 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Nov 2009 Posts: 33 | I'm starting my 4th week. Besides R tonsil I have two R lymph nodes 1.6cm and .9 cm three weeks before start of treatment.
One has shrunk significantly during chemo rad. The other, right next to it but kind of under the chin has not, maybe even has grown slightly.
Does anyone know what this means? I don't trust my RO. On different weeks she has answered questions differently. She told me that that doesn't mean anything.
Any input is appreciated!
Joel
Age 49, HPV 16+ SCC, T1N2bM0, Stage IV R Tonsil, 2 nodes, nonsmoker, lite drinker, 100 mile/wk biker, workout, play hockey, Tx:10/26--12/15/09, IMRT x35 70Gy, no surgery, Cis 1st rnd til some tinnitus loss after day 2, carbo next 3 wks, Peg in 3rd wk;still ate some solids 6th wk. 2012/05 Still Clean
| | | | | 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 | Joel,
First off it helps if you add your "info" to your Signature Line (see mine below) so that each time you post we are better able to respond.
I assume you will have 3 to 4 more weeks of concurrent chemo/rad so you have plenty of time left for your Tx to do it's job. None of us are qualified to answer your questions so it's best left up to your cancer docs to explain.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Nov 2009 Posts: 33 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Nov 2009 Posts: 33 | Thanks David.
I think I updated my signature.
I guess I'm not looking for a professional analysis as much as if anyone else had a similar occurrence.
Joel
Age 49, HPV 16+ SCC, T1N2bM0, Stage IV R Tonsil, 2 nodes, nonsmoker, lite drinker, 100 mile/wk biker, workout, play hockey, Tx:10/26--12/15/09, IMRT x35 70Gy, no surgery, Cis 1st rnd til some tinnitus loss after day 2, carbo next 3 wks, Peg in 3rd wk;still ate some solids 6th wk. 2012/05 Still Clean
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Joel,
Did you just copy my Signature Line? Other than your youth, Peg and that hockey thing, we are identical. Maybe when you recovery we can ride across the U.S. and I'll let you pull since your soooo young.
Use the Peg when you need to but keep swallowing each and every day.
Where in Va are you. I was born and raised in Richmond.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Nov 2009 Posts: 33 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Nov 2009 Posts: 33 | David,
My sister contacted you first and then I called you a few weeks ago. I especially wanted to hear from you since we were both so similar in Dx. I can't thank you enough for spending two hours talking to me.
And yes, I'm an avid lone-wolf biker. I was doing about 1500-2000 miles/year on local trails.
I'll take you up on a biking road trip once I clear all this.
I'm originally a MN guy (all males are born with hockey skates). I moved to Falls Church, VA in 92. I have to tell you, VA is amazingly beautiful (as you know).
Regarding the PEG, I'm taking everything orally (no food anymore--just to nasty and a bit too painful).
Thank you for your great advice on all things we talked about. It let me know that when I'm done with treatment I'm not eating steaks the next day (or month); That I'll have healing time for quite a while but that it happens slowly, but surely.
Joel
Age 49, HPV 16+ SCC, T1N2bM0, Stage IV R Tonsil, 2 nodes, nonsmoker, lite drinker, 100 mile/wk biker, workout, play hockey, Tx:10/26--12/15/09, IMRT x35 70Gy, no surgery, Cis 1st rnd til some tinnitus loss after day 2, carbo next 3 wks, Peg in 3rd wk;still ate some solids 6th wk. 2012/05 Still Clean
| | | | | 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 | Yep I remember.
Do try to swallow something each day to keep those muscles from forgetting how to. No ones knows for sure why some end up with post Tx swallowing problems and some don't especially when the Tx is similar but I didn't have a Peg and therefore I was forced to swallow and I didn't have any post Tx swallowing problems.
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 | Hi Jessica,
You might go to "Introduce Yourself" and let us know something about you. This is a wonderful group of people who can offer all kinds of support. Also complete your bio, too.
Looking forward to getting to know you better!
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
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