| | 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 | The next night I did some vegetable beef soup that also was tolerable ...
and last night eggs, bacon and toast (lots of butter and jelly)
and I could actually taste the bacon.
Woohoo.
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 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | 25 down, 10 to go, doctor day - Can anybody be this lucky? Please don't think I'm gloating, but I had another good week and doctor day.
The doc says none of his patients get this far into treatment with essentially no side effects. Other than a little tenderness on outer edge of tongue (both sides) and same on inside of each cheek, I have no symptoms. The throat feels good, I can still swallow normally with no pain, I still have about half saliva. Maybe best of all is I only lost 1 pound last week; thank you about a zillion cans of Ensure. It's the only thing I can taste.
My bridge club had a Christmas party today and I was able to eat some of most everything. None of it had any taste, but I was able to get it down. At the end of the day I layed claim to that nice big meaty ham bone. When I get some taste back it's going to make a really nice pot of pinto beans. I'm looking forward to that almost as much as that cheeseburger and fries.
I know others have a rough time of it, but so far I have been lucky. Hopefully, others can be too.
Only one more doctor day to go.
Everybody, have a great weekend.
Tony
Last edited by n74tg; 12-12-2013 04:52 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: May 2013 Posts: 134 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 134 | Apologize for gloating? Pleeeease...
We are all cheering for you!
Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
| | | | | 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 | 30 down, 5 to go, doctor day - Well a few symptoms have finally arrived, but they haven't been bad. I have some sunburn on the left side (tumor side) of neck. I can feel it, but it isn't bad. I have some hair loss at the base of my skull on the back side; just found that out today. I have a 1/4" tongue burn blister on the left side adjacent to my molars (apparently the dental rolls aren't doing as well as desired). And I'm getting some sinus drainage that wants to dry in my throat when I sleep. Mucinex and salt/baking soda gargles and a bunch of hacking/spitting seem to take care of it. Other than that, no symptoms.
Last week was a real busy week, so I didn't get to eat nearly as much as desired, hence I lost 4 pounds. The nutritionist is ready to get rid of me because I haven't been remorseful enough in her opinion about my weight loss. But, I still have plenty of energy, I still sleep well, and I still weigh 211, so I'm not withering away by any means.
I will have one more doctor day next Thursday, before my last treatment on Friday, 27th.
Everybody, have a great weekend. I'll be going dancing.
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: 6 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: 6 | Tony, please be very careful with your intake! I know you are doing much better than most and your weight is now at 211. believe it or not, dehydration and malnutrition can hit you like a ton of bricks. You can feel pretty good and a few hours later you feel so bad you think you may be dying. Or even overnight this can happen. It happened to me and I was hospitalized a couple times which was no fun at all. The worst part was how bad I felt. I wouldnt wish that experience on my worst enemy. So, please push yourself to take in at the very least the minimums of 2500 calories and 48oz of water daily, every single day for the next year.
Try propping yourself up on a couple pillows when you sleep and use a humidifier. This helps with the sinuses. Most sinus medicine will make you only dryer so be careful with using them.
I cant believe you have the stamina to go dancing. You are doing fantastic!!!!
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 | 32 down, 3 to go, mucositis arrived - over the weekend, and it's painful. Where the tongue burn was is now a big yellow (pus filled) blister and a bunch of smaller ones along the left side of tongue. It is very sensitive to anything warm or hot, so soup is out for awhile. Even salt water gargles hurt.
The doc said you've been lucky, most patients have this by week two of treatment.
Thank goodness for lidocaine.
Tony
P.S. Cold things like Ensure don't aggravate it, so I'm back to that.
Last edited by n74tg; 12-23-2013 12:48 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: 6 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: 6 | Using the salt water/baking soda mouth rinse does help. You can cut back the amount of salt of even eliminate it if you have to. Try your best to use the rinse with some salt as it helps with healing but dont put yourself in agony to do the rinse with salt. Do what you can tolerate. Magic mouthwash will help to numb your mouth long enough to eat/drink etc... It comes in several different formulas. Mine was lidocaine, malox and benedryl to be gargled and spit out. Some formulas are ok to swallow but be very careful as it can numb your throat causing aspiration. Hang in there, almost finished
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: Aug 2011 Posts: 269 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Oooooh sorry about the mucositis. Hopefully you will find something to soothe it and it will heal up quickly. I'm really excited that you have only have three more treatments to go. I'm counting down with you. Will you be able to get a tx the day after Christmas and be done by Friday? I've been wondering about that.
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2012 Posts: 214 Likes: 1 | At risk of becoming the thrush guy, But everytime I had burning tongue, thrush followed shortly after. Please have it looked at, thrush sucks.
Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | | 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 | Yes, I will have treatment on Thursday and be done on Friday morning of this week.
I had the doc look at my mouth and he confirmed it was mucositis. He asked if I had lidocaine and oxy as well as chlorhexidine gluconate as those were the three best things to use. He also pushed continuiing to use the drinkable aloe vera.
thanks guys ... Merry Christmas tomorrow.
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
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