| | 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 | Start drinking a can of Boost VHC with every meal.
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: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Sounds mostly good Tony. The problem the weight loss from treatment is it's mostly lean muscle, not fat. I lost 110lbs, probably more, just from chemo in a few weeks. It took me several years to gain 70lbs back, but been up and down between treatments since, but I'm not even half the person I was in all regards.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | 14 down, 21 to go- Well, getting closer to the halfway point, that's kind of a milestone I'm shooting for.
Taste is about gone, only thing I can taste is Ensure. Even those good energy bars don't have any taste anymore ... what a bummer. Oh well, now it's just forcing food down so I dont' shrivel up and blow away.
I'm not nearly as up today as a week ago. I'm not depressed, just not my best day.
There is some good in every bad, I still have saliva, on both sides.
Going to force myself to go to dance club tonight. Maybe a little music and some moves will make the day end better.
A good weekend to everybody.
Tony
Last edited by n74tg; 11-22-2013 04:37 PM.
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | 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 | Almost to the half way point. Keep up the good work, you are doing great!
When I was going thru rads, I rediscovered Yoo-Hoo. I lost most of my sense of taste but somehow I could still taste Yoo-Hoo. It felt so soothing on my sore throat. Maybe you could give it a try. It might taste good to you.
PS... Im envious of your energy! Please use extra caution when going out in public. You can very easily pick up all kinds of things when your immune system is compromised. Let hand sanitizer be your new best friend.
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: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Two good ideas Christine, thanks.
And the evening of dancing was just what the doctor ordered. I found out my dance club is just as supportive as my bridge club. Seems like between 1/3 and 1/2 of everyone I talked too has had cancer in some form. We will put our own Walk for the Cure team together just from the dancers.
Ambra, wishing you could've been there, you would've enjoyed it.
Tony
Last edited by n74tg; 11-23-2013 01:20 AM.
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | Joined: Sep 2013 Posts: 94 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2013 Posts: 94 | Hi Tony,
Very glad to hear you enjoyed an evening of dancing with your friends. Keep up the good spirits!
You have to eat, even though you can not much. Have you tried that amazing chocolate ice0cream shake recipe of Christine's? Even though you can not taste it, it has gazillion calories there are good for you.
36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound
| | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | 15 down, 20 to go - Well the treatments seem to be getting easier. I guess it's because we all have the routine down. If they haven't finished preparing the room and table before my arrival I know what needs to be done, so go get the towel and lay it down on the board, go get the rubber donut for both hands to hold on too; things they now don't have to do, freeing them to do other things.
The mask fits better and better every day, I just hope they don't decide it needs tightening up. I can't move anything, but it's also not mashing deep imprints into my skin like at the beginning.
Having had this many treatments I can tell which radiation field they are on based on the position of the machine head. 5 o'clock, 4:00, 3:00, 1:30, 12:00 straight over me, 10:30, 9:00, 8:00, 7:00 and then back up to 12:00 with a table shift to get the lymphnodes between my collar blades. The lights come back on and we're done.
I suppose I'm fortunate to not have any throat burn yet, no difficulty swallowing, still have saliva though mouth dryness is also beginning to appear, the skin on each side of my neck still looks pretty much normal unlike the patient that goes before me ... poor guy he looks cooked, deep red, closer to purple, with some skin cuts/tears present at his collar line. They have had to interrupt his treatment schedule more than once, take up to a week off so I suppose he can get some relief.
I asked if I should expect that, everybody is different is all they will say and that he is getting a different treatment regimen than you. Any more would I suppose be a privacy violation. They wouldn't even tell me how far he is into his treatment regimen yet. That's okay , I'll ask him.
Still, I'd rather be in my shoes than in his.
Getting through this one day at a time.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | 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 | Tony, when you talk with the patient who goes before you. Do him a favor and if he is there for OC, tell him about our forum. We can help him.
You are really holding up very well. Keep up the good work!
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 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Tony - I have to strongly second what Christine said about telling the patient who goes before you about our OCF forum! That is exactly the way my son and I found out about OCF and I will always be eternally grateful to the young man in the Rad waiting room who whispered to me as he left for his Rad Tx "Go to the Oral Cancer Foundation.org. They can help". And we did and they helped more than words can say! So 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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | So glad you are making your way through it you are officially at the half way point. Some people have a worse time of it. It's genetics and I am sure location of the tumor, and likely knowledge of prevention of symptoms etc..... HUGS and carry on...
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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