| | 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 | Ten Month Report - Well I missed the nine month report, so here is an update.
It's not a lot different from two months ago. Food taste is still the disappointment. I can eat everything, and I can taste everything, it's just a lot of it doesn't taste very good. I suppose there's a silver lining in that black cloud because when food tastes bad, you don't eat much of it, so it's easy to keep the weight off.
The dry, gunky sinuses are still a problem, but not a big problem. It wasn't all that long ago I had to use the sinus irrigator multiple times per day; now it's once a day at most. We're just getting our first really cold spell of the season and it's pretty dry outside, so I'm thinking it's making the sinuses a little drier than normal; maybe I'll go back to using the humidifier at night when sleeping.
The bad taste in the mouth is pretty much all gone.
I did get to attend the OCF walk in Houston in October and meet both Christine and Uptown and one other survivor who I don't see on the forum much. One of the dental hygiene schools brought a lot of students to give oral cancer screenings and I'm proud to report they have learned how to give an excellent screening; wish everybody screened that well.
take care,
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: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | If stuff doesn't taste very good, doesn't that mean that there isstill more time needed for the taste buds to get back to near normal? I can taste most stuff but savoury foods taste a bit too salty which shows there is still a lack of function there somewhere. My biggest problem is that sweet things taste delicious and I'm putting on weight. That's both good and bad, I guess.
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | 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 | Twelve month report - Wow, it's been a year since treatment ended. Where has the time gone.
Food taste and dry sinuses are about the only remaining symptoms of ever having cancer. I can taste all foods some, but some of them (like chicken) still taste blah to bad. Fruits, sweets (even chocolate), vegetables, beer all taste pretty good.
Dry sinuses still persist but have improved over last six months. Now that we are in winter I realize the dry air makes the dry sinuses worse. But, sinus irrigation with a mild solution of saline and baking soda work wonders.
The weight has stayed off, so I love the new, slimmer look. To make that happen I don't eat lunch most days.
Life is back to being good.
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 | Thats a great update, Tony! You have done remarkably well! Im so glad you posted. It gives others hope that they can return to their old lives too.
Keep up the good work.
PS... Happy New Year and please say hello to your daughter for me. She is such a nice girl!
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 | Fifteen Month Report - Well I wish I had lots of good news to report, but all is about the same as it was at 12 months.
Food taste comes and goes, about the same as before. I feel like I have a bad taste in my mouth a lot of the time and want to brush my teeth, but brushing doesn't help. So, I keep some old forumla Biotene around and wash out with that occasionally. It seems to help.
Weight has been slowly coming back, but that's not a good thing as I wanted to stay at my fighting weight. Two meals a day and I stay constant, but lately there have been too many three meal days. I gotta double down on this again.
Other than that, life is good. I had a CT and ENT visit last Friday, the doc is happy with scan results and what he saw on that through the nose down into the throat torture device they use to inspect things.
Oh well, life goes on.
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: 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 | Sounds like you are doing very well, Tony. You must be really doing great to be able to gain weight already. Keep up the good work! PS... Say hello to your lovely daughter for me
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 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2012 Posts: 214 Likes: 1 | Tony,
It's great to hear all looks good at the 15 mo mark. I know recovery takes a long time. The good news is I saw a lot of improvements in QOL between 15 and 24 mo. You might not notice them when it happens, but when you look back, they happened.
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: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | I think that's great news Tony.
Marvellous to have a clean scan and scope.
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | Great news, keep up the good fight in this WAR!!! Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | | 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 | Thanks guys for the comments
Weight gain has never been a problem since treatment ended... I have to be careful I don't gain too much weight back. That's why most days I only eat two meals. I've even had to go from a large cereal bowl to a small one.
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
| | |
| Forums23 Topics18,210 Posts197,045 Members13,232 | | Most Online614
Jul 29th, 2024 | | |
|
