| | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | hi everyone,
hoping to find some good tips here before I start treatment on Tuesday. I've had two simulations so far (because they decided to change over to the TOMO) and both times were an epic fail and I had to stop because of choking on my saliva. I took the mouthpiece home and am trying to practice and keep it in there for ten min without choking. some good trial runs, some epic fails. So do I try to swallow the pooling saliva? Do I just keep it pooling and wait til I can sit up? Do I take a sedative before?
Any advice would be helpful. Some of you have read before that I've been quite anxious. I'm doing better and trying to keep positive. Love the new thread with the "quotes"
Many Thanks! - nancy
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 2013 Posts: 262 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 | Hi Nancy, my treatment starts Tuesday as well. I have mask anxiety and decided to take a sedative the first three sessions and then decide whether or not I want to try without. Did your dentist make your mouthpiece? I have a mouthguard made by my dentist to prevent radiation scatter. I was able to breathe through my nose but I think I would have had trouble mouth breathing.
<<<HUGS>>>
53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | | 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 | The mouth dip stick is used as a marker where to radiate. I didn't have one for either of my radiation Tx, but have small tatoo's as a marker, but wish I had the mouth guard to prevent radiation scatter, and the fluoride tray, even though I knew of them. I didn't take any anxiety pills, but the pain pills sort of took care of that. Good luck to both of you.
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) | | OP Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Hi mamacita, I've been following you...yes I know we are on the same schedule. I have you on my mind. Yes, I have the mouth guard, I was not sure what is was called, that or tongue depressor. Anyway when I put that in and lay down I gag on all the saliva pooling since I can't really swallow with it in. I think maybe part of my problem is, my swallowing is not normal since my TORS. That's why I'm wondering if anyone else had problems or is it just me.
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 2011 Posts: 269 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | thanks paul, sounds crazy but it's nice to know that the mouth dip stick helps with radiation scatter. I did not know 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: 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 | A mouth guard does, the other is just to mark where cancer is, immobilze the tongue, altough but it may, but not aware of it. The mouth guard is usually made of latex.
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) | | OP Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Ok think I got it. And yes they just said its to keep my tongue in place. It's big and chunky and I guess made of latex. I'm glad to know its a useful tool to help me, yet I have the pooling saliva - gagging pblm and hoping someone else here can help me. The tech explained that if they have to stop and get me up every time it will throw off where the exact marks are to radiate and make the radiation less effective. Less effective throws my brain into...well...I had two opinions about radiation, both strongly recommended it, yet said it was a "reasonable option to not radiate" and what am i doing here??? Ok thats another subject...I'll just stick to the getting through the tx without gagging...
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: 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 | When I was nauseas, actually vomiting before I went, they said if I feel the need just to signal then, and they will stop the machine. Do my thing lol, and set it up again, and continue. It will just take longer. I got 18 zaps and counted each one.
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) | | OP Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | I guess the show must go on....
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: Dec 2012 Posts: 16 Likes: 1 Member | | Member
Joined: Dec 2012 Posts: 16 Likes: 1 | Hey! For me I ABSOLUTELY hated that dumb mouth guard! haha! what I did was breathe through my nose and tried to do the hard swallow (swallowing without using your tongue). As radiation goes on, your saliva will become thicker and even more gaggy. Then, go as long as you can breathing through ur nose and then wave ur hands frantically when u start to gag and they'll wait till the end of the zap and come in and un strap you from the table, lower u then u can sit up. I never waited for the lowering, I just flew up, and would puke. Oh! small tip! keep a bag in your hand so u have something to puke in! And when you get to the stage around week 4 of treatment, when you're not eating or drinking, to get yourself to keep drinking, mark a water bottle by each hour and you have to drink to that mark by that hour. so you have lines all down the bottle marked 9am, 10am, ect. I found this to help motivate me to drink. I made it like a competition. Im very competitive haha! But this will be the hardest time of your life and just push through it! you guys will be okay in the end! Then you get to have a great survivor story! but please, never lose hope, and never give up! And hey, don't forget to use your cancer card! I convinced my parents to get me an iPad for christmas since my surgery was a few days after christmas  haha! Oh! and attitude is a big thing! Try and stay positive! Trust me, you may not feel like it, but there is always someone else pushing through harder times and just as hard times! You can do it! Everyone loves you and supports you!
Shelby, 28 yrs old, stage 3 tongue cancer, non- smoker, not HPV, 12/27/12 partial glossectomy and neck dissection, 1 lymph node positive, Chemo and Rad 5 days a week, 32 treatments, feeding tube in, finish treatment 3/22/13  back to normal basically
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