#88806 01-24-2009 12:28 PM | Joined: Jan 2009 Posts: 16 Member | OP  Member
Joined: Jan 2009 Posts: 16 | Hello all. My wife introduced me to this forum this morning, so I thought I'd say "hi".
I have a T2N2bM0 SCCHN at the base of the right side of the tongue and have undergone surgery, where they ripped out 33 lymph nodes. Three had cancer and one of the three had exceeded the boundary. I started radiation and chemo on the 30th of December and am officially half way through!
I have the pump feeding me already and am working my way up to 5 cans a day by tomorrow. Officially, my voice is now pretty much shot, as talking is difficult. We're going to go buy a magic erase board later today.
So. I assume the throat is just going down hill from here (less the weekends off), so that means it will get progessively worse? So - sleeping is a bit of a challenge for me. Any suggestions (considering half the night the pump is going and I have to lay at an incline)? How about the best way to manage the pain and have a somewhat wet mouth?
Lastly, I do chemo every week at half the dosage, which is working out quite well. The doctors say less chemo more often works best for what I have.
Anyway, 18 TomoTherapies down, 17 to go!
Last edited by TomHD; 01-24-2009 01:36 PM.
51 years Old. Non smoker. Light wine (well in a few more months). T2N2bM0 SCCHN Base of Tongue. Ripped 33 Lymph Nodes via surgery. 35 TomoTherapies Total, 1 Chemo each week. Cysplatin. Last treatment 2/18/09.
| | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Welcome to the forum. I can't help with the pump as I just had a peg, but for the dry mouth try Biotene mouthwash and then some Biotene or Orajel moistening gel just before bed. You may still wake up several times needing to reapply the gel but it definately has helped me.
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: Jan 2009 Posts: 16 Member | | OP Member
Joined: Jan 2009 Posts: 16 | I've only had the little sample packs of the Biozene and not really sure I've used it right yet. Seems like wet petro jelly, or is that the wrong compound? Guess we'll go get some easier way to apply it today and make sure it's the right stuff.
Thanks for the input.
51 years Old. Non smoker. Light wine (well in a few more months). T2N2bM0 SCCHN Base of Tongue. Ripped 33 Lymph Nodes via surgery. 35 TomoTherapies Total, 1 Chemo each week. Cysplatin. Last treatment 2/18/09.
| | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Yep, wet petro jelly would be the right stuff. Just squeeze out about 1/4 inch or so and put it on your tongue and leave it there. Don't swallow it, just let it spread around. As I said, it's really helped me a lot.
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: Jan 2009 Posts: 16 Member | | OP Member
Joined: Jan 2009 Posts: 16 | I guess I'd better get used to it then! Couldn't they at least have made it taste like tuity fruity or something (like we can taste anything, anyway!)?
Last edited by TomHD; 01-24-2009 01:45 PM.
51 years Old. Non smoker. Light wine (well in a few more months). T2N2bM0 SCCHN Base of Tongue. Ripped 33 Lymph Nodes via surgery. 35 TomoTherapies Total, 1 Chemo each week. Cysplatin. Last treatment 2/18/09.
| | | | | 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 | Keep a spray bottle on your night stand and when you wake up just spritz yourself.
Up to 5 cans of what? How many calories? How much water each day?
Everything will just get worse from here on out, well usually, so keep on your doctors re the pain meds and stay well hydrated.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jan 2009 Posts: 16 Member | | OP Member
Joined: Jan 2009 Posts: 16 | 5 cans of 500 calorie 250ml Vanilla Nutren 2.0. I'm supposed to go to 6 cans, but my stomach apparently can't quite take that much. Sent me to the emergency room the other day when I put 3 60cc flushings down my tube. No idea why other than Vagus Nerve pressure or some other such thing.
Water? That's my bad area. I try to do 24 - 32 OZ in addition to the flushings.
51 years Old. Non smoker. Light wine (well in a few more months). T2N2bM0 SCCHN Base of Tongue. Ripped 33 Lymph Nodes via surgery. 35 TomoTherapies Total, 1 Chemo each week. Cysplatin. Last treatment 2/18/09.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I tell others to shoot for 3000 cals and 48 ozs of water each and every day.
Light wine (well in a few more weeks).... Might want to revise that soon. I don't want you to be disappointed.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jan 2009 Posts: 16 Member | | OP Member
Joined: Jan 2009 Posts: 16 | I was worried about that. Don't want to ruin a good Syrah before I can tell it's good.
51 years Old. Non smoker. Light wine (well in a few more months). T2N2bM0 SCCHN Base of Tongue. Ripped 33 Lymph Nodes via surgery. 35 TomoTherapies Total, 1 Chemo each week. Cysplatin. Last treatment 2/18/09.
| | | | | Joined: Jan 2009 Posts: 11 Member | | Member
Joined: Jan 2009 Posts: 11 | Welcome and sorry you have to be here. Hang in there, sounds like you have a great attitude!
SCC tongue stage 3. 43 nodes clear.
Surgery in 1996. 2nd surgery
(cancer) 2008. 3rd surgery will be in Feb 2009.
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