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n74tg Offline OP
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16 down and another good doctor day - With the clinic being closed for Thanksgiving they decided to do doctor day early.

Long story short, doctor is still tickled with my progress. Side effect symptoms are limited to loss of all taste, a small burn on inside of my left cheek and a perpetual bad taste in mouth. That alone is enough to make you lose your appetite.

But I still have saliva both sides, no throat problems yet, can still swallow and have no radiation burns on skin of neck (Aquaphor twice a day) and wear pretty much nothing but loose fitting tee shirts.

Since treatment began I've lost 9 lbs, not as bad as I thought. Nurse gave me the heads up that when you reach 10% body weight loss that's when you get a PEG tube, so get busy and start eating more. I have 13 lbs to spare before reaching 10% (no I'm not going to try to see how close I can get to the limit). She asked me what my distress level is (0 or 1, ie no distress), fatigue level (mild, need a nap in morning and maybe in afternoon, she said fine, just don't sleep all the time), and nausea (none, though stomach seems a little gripey sometimes).

I discussed the bad taste in mouth with doctor and he said that's pretty common. As far as he is concerned I can do well from here to end of treatment on Ensure alone, but do 7 of them per day. I think that might be a plan.

Tuesday mornings I eat brekfast with the RC model airplane flying group and a friend noticed that I ate all of 2 over-easy eggs, 3 strips of bacon and two biscuits smothered in syrup. He said doesn't look like you're having any trouble eating to me.

With 4 good doctor days in a row I know this might come across to some as if I'm bragging. Don't get me wrong I'm tickled pink it's going this well. I'm just hoping others can see it's not always bad for everyone. Keeping my fingers crossed that weeks 4 through 7 don't up-end the apple cart too much.

Happy Thanksgiving everyone, I'm feeling good enough to make the drive to Dallas tomorrow to mom's house.

Tony

Last edited by n74tg; 11-26-2013 05:21 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: Jan 2013
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Tony,

Thanks for the updates. Enjoy the good times while you can. Great timing as you are likely to enjoy a feast in a couple days!

At times I feel reluctant to share experiences of getting off "easy" but on balance, we offer more hope and better outcomes for those getting started later; all is not doom and gloom.

Just a reminder, most encounter rough road after treatment wraps up. Personally, I did not get much worse post-tx and by about two weeks post or so I was, overall, about at the low point. Some side effects such as mouth sores and dry mouth hit me later but in general progress was positive pretty early. Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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n74tg Offline OP
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Thanks Don:

I know the rough part is coming up. The doctor said today it will be about the most uncomfortable and miserable you have ever felt in your life. I don't doubt it, but I also don't fret over it.

It is what it is, it will get better, so I'll just suck it up and get through it.

Easy to say now huh.


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: Oct 2013
Posts: 559
Likes: 1
n74tg Offline OP
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Just before Thanksgiving another survivor (of lymphoma) gave me a heads up to using lemon drops to counter the horrible taste that seems to live in my mouth.

I picked up some and they do seem to make the problem better. These happen to be sugar free, sweetened with splenda, only ones available at the store.

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: Oct 2013
Posts: 559
Likes: 1
n74tg Offline OP
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Half Way Done - Finally, crossed the halfway mark this morning. 18 down, 17 to go. The holiday weekend (4 days off) was nice; the sore mouth just about healed up, which made it easier to start again this morning.

No taste for food; I can almost taste Ensure so that's the way I'll probably go until completion. I can eat other stuff, but it tastes so bad (and I mean REALLY BAD) that I just say pass, I'll stick with Ensure. It makes shopping at the grocery really easy. Trivia question - how many six packs of Ensure can you carry (no fair using a basket).

Throat doesn't hurt yet, tongue burns about healed, no skin problems on side of neck (thank you Aquaphor), sleeping well, seem to still have enough energy to want to go do things. So far I'm escaping the side effects, lets see how the last three weeks go .. finish up the day after Christmas.

Right now I would kill for a big old double meat, double cheese bacon cheeseburger and fries. Sadly, the stomach has shrunk enough that I'd likely get only 1/3 of it down.

Oh well, such is life.

T





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: 40
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Joined: Sep 2013
Posts: 40
Hi Tony, I noticed you wrote on my thread. Looks like your doing great so far. Much better than I. I have finished my RAD. 11/22/13. I couldn't eat by mouth at the halfway point and had a PEG put in. My hats off to you for going all the way without one. I was losing too much weight without it. The thrush didn't help either. Your skin seems to be handling it better too. I developed a staph infection and missed 4 days near the end. I did 35 in all. I found that so far the worst times for me were the 5th and 6th week, but it got easier from there. I hope this doesn't sound like I'm talking about me. I'm just trying to show you how much better your doing than I. Hope you keep sidestepping all those potholes. Almost 2 weeks post TX and side effects from the chemo are still haunting me. Waiting for those cheeseburgers myself. Hang in there, Take care.


Age 54 at DX 06/20/13 Left Neck Mass 07/11/13 DX SCC OC T0N2bM0 Stg IVa p16 neg. 08/09/13 Tonsilectomy and Adnoidectomy, Panendoscopy. Unknown Primary. Begin RAD 09/30/13 Cisplatin 10/01&22/13 PICC 10/21/13. PEG 10/25/13 to 1/24/14. Erbitux x 3. End 35 RAD 11/22/13 Clear PET 02/25/14
Joined: Sep 2013
Posts: 94
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Posts: 94
Congrats on half way done Tony! From now you get to count towards smaller and smaller numbers.

I share your pain for the no taste. and you are doing so well with no throat pain and no skin problems either.

It was very nice talking to you, too. Thanks for calling!


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: Nov 2013
Posts: 33
"OCF Canuck"
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Tony keep the thought of that cheeseburger in mind. You amaze me with the positive thoughts and good wishes you have for so many on here.


Ja 2013 tongue, red sore spot, r/r edge + white strip underneath, no pain
Al Bx on spot, strip, and vocal cords, lab rep benign
Oc 24 Surgeon follow-up, larger Bx req'd
Oc 25 Bx bits to Vanc. Cancer lab
No 14 MD said more ca investig'n req'd
No 19 Prince George CC, MRI & CT
No 20 PGCC Oncol says cancer
De 2 Vancouver Cancer Centre, PET/CT
De 31 VGH partial glossX + ex spot on vocal cords
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n74tg Offline OP
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21 down, 14 to go, doctor day - Okay, chipping away at treatment one day at a time. Unless my math fails me, I'm 60% done. That fact alone will make this upcoming frozen weekend almost tolerable. We're in for 5-6 days of ice, sleet and general nastiness. Fortunately I have what looks like 50 bottles of Ensure on site.

Nurse and dietician both fussed, lost a few pounds last week, but doctor remains happy. He says the surgery site is almost completely healed and everything else looks good in the mouth and throat.

I'm luckier than I deserve because still no skin burns or throat burns. The inside of cheek burn is almost a non-event since I started using double dental rolls all around. I'm still sleeping well and have enough energy and concentration to play bridge several times a week. I still swallow easily and have some saliva, the dry mouth seems best handled by keeping a piece of Trident chewing gum (xylitol sweetened) going most all the time.

But maybe the best piece of news is on a whim I bought a can of Chicken and Stars soup at the grocery, heated it up just now and it was downright tolerable to eat. I'm sure it isn't as healthy as Ensure, but getting something hot to eat that didn't taste like cardboard was a very welcome change.

I'm sure I will find some pain and discomfort before it's over, but I'm also so thankful that it has stayed away this long.

I hope everyone has a great weekend.

Tony

Last edited by n74tg; 12-05-2013 02:55 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: Sep 2006
Posts: 8,311
Senior Patient Advocate
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Posts: 8,311
Keep on truckin!


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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