| | 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 | I finished radiation last Friday (27th). If you haven't read my treatment thread, radiation went very smoothly for me, very few side effects. Since then the mucositis has worsened to sores on both sides of the tongue. Thank goodness the VA sent me an extra 300ml bottle of oral lidocaine. Swishing that around in my mouth is what gets me through the day, particularly before eating.
I'm still pretty much on an Ensure Plus diet. Every once in awhile and if my mouth is sufficiently numbed I'll do one of the big cans of chicken noodle soup, or I can do scrambled eggs pretty regularly. I got brave stupid the other night and opened a can of gumbo, which about set me on fire, so down the drain it went. But, the Ensure has way more calories and nutrients, so I don't bother with the soup until I can't stand drinking another Ensure.
Other than that, rope mucous is pretty heavy. I hack and hack to get it out, thank goodness my throat isn't raw and I can swallow normally.
My energy level is good and I sleep well at night. So, I will definitely go to our dance clubs New Years Eve party tomorrow night.
Tony
Last edited by n74tg; 12-30-2013 06:46 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: 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 | On your doctor visits you can ask the nurse to use the suction machine to get the thick ropey mucous out of your throat. You will feel so much better with that stuff out of there! Your doc can write you a prescription to get one to use at home from a medical supply company. The thick ropey mucous phase lasts anywhere from 3-5 weeks post rads. One day it will just stop and you will feel great but then overnight the gunk will be replaced with dry mouth. Chicken and stars soup goes down a little easier than the chicken noodle. Less chewing. Its still very important to get the daily minimums of 2500 calories and 48 oz of water. It will help you to get thru the recovery phase as easily as you did the rads. You are one tough guy!!! Being without a caregiver I cant believe how well you did. 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: 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 | Finiashed rad Dec 27th and off to a News Years Eve Party 3 days later.....there's alwys one wise guy in the group!!!!
Seriously though, Congrats.
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: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | My first post induction chemo New Year's Eve was celebrated in ICU, I vaguely remember. Have fun!
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 | Hey Guys:
Dancing, bridge and flying model airplanes are what kept me sane during treatment. If I had just sat around the house waiting for treatment to be over I would have gone stark, raving looney.
Well, that is only partially correct. This forum family is really what kept me sane during this ordeal. I owe a lot of people a big thanks for that.
So, now it's time to pay it back three times over by helping the new guys that come behind me.
Thank you all ... Happy New Years
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: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Tony, I hope you have a great time tonight, you deserve it! Your attitude is fantastic and I know you're going to be of enormous help to many other members of our family over the years.
Success and happiness in the new year.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | 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 | Hey, dancing was great, though I tired by about 11pm. The real bummer was the buffet line was full of everything I like to eat and I couldn't have any of it.
We had bought some raffle tickets and the prizes weren't awarded until 11:30, so we had to stick around until then. Should've left, didn't win anything.
Oh well, that bed sure did feel good to crawl into.
I'm still fighting this mucositis, am now in week two of it. It seems I'm having to use the lidocaine swish and spits about every hour now, more frequently than before. I'm not swallowing it as my throat is not sore.
Happy New Years
Tony
Last edited by n74tg; 01-01-2014 03:05 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 Posts: 1,292 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,292 Likes: 1 | Tony,
I know you are well read here but what about a suction machine for the mucous? For many who get the "ropey" version it seems to work really well.
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 | | | | | 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 | Hi Don:
I suppose if I had difficulty getting it out of my throat via warm water gargles and a bunch of hack and spit then I would go for the suction machine.
But, right now it's not really difficult to handle the old fashioned way. But, if it gets harder then I'll probably go for one.
Thanks for the suggestion.
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: Apr 2013 Posts: 76 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2013 Posts: 76 | Tony-it is so great to read your posts! Hope you can rally for a good barbeque sandwich or ribs in the near future. I'll shamelessly recommend my sister's joint in Little Rock (unless Bryant is closer :-)
Keep healing!
Best,
Mary
Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
| | |
| Forums23 Topics18,210 Posts197,045 Members13,230 | | Most Online614
Jul 29th, 2024 | | |
|
