| | 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 | Another Good Day - Hey the mask was actually comfortable today, if a mask can ever be "comfortable". It seems like it's taking less and less time to get me positioned on the table and in alignment every day. I know in the beginning they fussed and fretted for what seemed like 10 minutes before rads actually began; now it seems like 2 minutes and that cute little RT is saying "okay hun see you in a few". In fact all the women at the clinic seem to call me "honey". Don't burst my bubble, let me enjoy it just a little longer before telling me they call all the men honey.
So, rads go smoothly, then off to the dentist who gave me samples of Mucotrol (concentrated oral gel wafers). Then it's off to get another 80 sheets of foam insulation for my house. Beautiful weather outside, sunny and high of 73. I actually wore shorts to work this afternoon. More work means the mouth doesn't hurt as much. Drank a lot of water while working.
But in the Zen nature of life a little pain must come. I think maybe I'm beginning to get trismus. My mouth will only open maybe half as much right now as before surgery. I showed the dentist and she agreed, stretching exercises are in order. So, the whole time I'm driving back and forth to get foam I open wide, move jaw left to point of pain, then same thing to right. If this is not the right thing to do, please let me know.
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 | Do the exercises several times per day. I always did them both going to and going home from treatments, along with a few other times during the day.
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 | 7 down, 28 to go - Hey, I'm 20% through, may not sound like much, but it's way better than where I was at the beginning.
The mask felt good again today, so much better than last week. Felt good means it didn't actually hurt to have it on.
I did learn something new today. My primary RT wets the dental rolls and squeezes then down to a smaller size before I install them in my mouth. Today the helper gave me the dental rolls and didn't wet or squeeze them. They are a lot harder to install dry. So, tuck that away for future reference if you are using dental rolls.
Sometimes we just get lucky. I had to arrive early today at the clinic. For some reason the prior patient was running late, so they just reversed us on the schedule My original 45 minute wait just literally evaporated once I walked in the door.
You know it's a lot easier to keep a positive attitude when good things happen. I know the worst is yet to come, so I'll just enjoy now while I can.
later
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 | 8 down - Well today was a surprise. I arrive at the clinic to see two young shining faces at the console with my RT. "Wednesday is teaching day" is the greeting, so I meet the two "students" both mid-20's, one guy, one gal.
They are ready for me, so in we go. The girl hangs back, only the guy comes in with us. Strap me down, RT says "okay hun we're going to get started". They all leave and I lay there in my mask for 10 minutes before anything starts whirring and moving.
Okay, okay, okay, let's do the teaching after the rads are done, more importantly after I'm out of this mask, good it fit well.
You know, I really don't have anything to complain about.
Tomorrow is doctor day, and I've got a whole list of questions to ask.
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 Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I remember one day when my tecks were standing over me after I was strapped down and ready to go and feeling a tad nauseaus and they engaged in a personal conversation. I had to speak up and remind them I might PUKE if they didn't hurry up. Seemed to hurry them along!
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: Aug 2011 Posts: 269 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | 10 min strapped down in your mask! Unacceptable! Yes, you do have something to complain about. That should not happen again. 
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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Out of the 35 sessions I had, there were a couple times delays were encountered. But of the 30+ sessions where I was on and off in 10 minutes total, on balance I am pleased as punch the newest machines were used.
From what I read here, there are those who have older technology which takes longer plus are less reliable with breakdowns requiring skips and reschedules. Only once did I get a call and told there would be a delay; in the end, all of which was a couple hours.
Remember, the qualified tech who diligently performs your daily treatment was in training in the past as well. You benefit each day from the minor inconvenience from the one who suffered some delay. Consider the training days as "paying forward" your gratefulness for having such qualified staff in YOUR time of need.
And think of all those around the globe who do not have access to such wonderful technology at all and just die.
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: 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 | Delays happen use to technology, alignments. Once, when I was clamped down, the machine broke down, and session was canceled. My treatments normally lasted approximately 17 minutes, with 18 zaps, bilaterally.
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: Aug 2011 Posts: 269 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | I'm odd man odd out it's just that it happened before it even started. Ugh you all are kinder than me. Then again, my mouth piece made my saliva pool up so bad, I would have never made it laying there an extra 10 min without choking.
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: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | Keep up the good fight and maintane the WARRIOR spirit and all will be over soon. It gets harder before it gets better, alot like Boot Camp!! 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 !!!
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