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Katy G Offline OP
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Today's appointment was rather uneventful, I'm doing head and neck radiation for six weeks, Mon thru Friday. I'm about five hours post RT and my neck is a bit red and irritated, itching, and sort of a prickly heat..mainly around my neck dissection scar. I'm assuming this is normal.

No other side effects yet. The mask makes me crazy, I never thought I was claustrophobic before I laid under that mask for the first time! I will be asking about anxiety meds on doctor day tomorrow.

I'm anxious about this whole ordeal, but I feel good. I'm optimistic.


Non-smoker, non-drinker
10.28.13 Biopsy R front tongue
10.30.13 Stage 2 SCC dx HPV Neg, age 27
11.7.13 Right ptl gloss and R neck diss. Nodes neg and neg margin
1.17.14 SO confirmed SCC recurrence
1.23.14 Right glossectomy crossing into midline some of L remv and hollowed out inside, neg margins
1.28.13 swallowing strained, liq diet, Back L tongue shows poss tumor
2.5.14 Clear CT
2.17.14 Clear PET
3.10.14 Start IMRT

Joined: Jan 2013
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Katy,

It is common for the first couple weeks for the "free pass" to last. About then the side effects start to take hold and the ride gets rough thereafter. Enjoy the scenery while you can.

The mask makes many very anxious. If, after a few more sessions you feel it is not any better, ask for some meds to pop before treatment. One downside is it may affect your ability to drive to treatment.

People bring music in and count the songs until done. Personally, I was not anxious but more bored and just wanted to get it done. I would focus on the arm as it swung around and watched the fingers slide in and out and imagined what sort of radiation pattern it was shaping as the rads were being delivered.


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: Jan 2014
Posts: 17
Katy G Offline OP
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I was worrying about what would happen if they walked away and something happened that everyone left and I was STUCK under that mask ALL night until morning! My anxiety is terrible. lol. I hear that by the end of the first week, things are starting to get a bit worse. I'm choosing to be optimistic that things will not be as bad as my mind is making them. We shall see. I'm happy, anyway. smile I am on narcotic pain meds so my husband drives me to every appointment anyway.

Last edited by Katy G; 03-10-2014 08:52 PM.

Non-smoker, non-drinker
10.28.13 Biopsy R front tongue
10.30.13 Stage 2 SCC dx HPV Neg, age 27
11.7.13 Right ptl gloss and R neck diss. Nodes neg and neg margin
1.17.14 SO confirmed SCC recurrence
1.23.14 Right glossectomy crossing into midline some of L remv and hollowed out inside, neg margins
1.28.13 swallowing strained, liq diet, Back L tongue shows poss tumor
2.5.14 Clear CT
2.17.14 Clear PET
3.10.14 Start IMRT

Joined: Jul 2012
Posts: 3,267
Likes: 1
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Joined: Jul 2012
Posts: 3,267
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Usually the effects of radiation, redness, start between 10-14 days after starting, but some may have them sooner. Did they tell you to use cream on your neck? Usually it's Aquaphor, last year Cetaphil was also recommended to me, less gready, but don't use the creams before your radiation treatment. They have audio, and CCTV to monitor you, but I often thought the same, but thought no plastic mask was going to hold me down lol. Good luck the rest of the week.


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: Jan 2014
Posts: 17
Katy G Offline OP
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Posts: 17
The redness and itching is mainly around my scar. I have extremely sensitive skin anyway though. They did tell me to use the Cetaphil, three time per day but not for three hours before therapy. It is so greasy and it leaves a film. I hate it! It helps though. I also have a stick called The Healer, it is soothing. I know they have the audio and cctv, but my anxiety leads me to think of every possible and impossible scenario. It's quite terrible, but I get a good giggle at myself.


Non-smoker, non-drinker
10.28.13 Biopsy R front tongue
10.30.13 Stage 2 SCC dx HPV Neg, age 27
11.7.13 Right ptl gloss and R neck diss. Nodes neg and neg margin
1.17.14 SO confirmed SCC recurrence
1.23.14 Right glossectomy crossing into midline some of L remv and hollowed out inside, neg margins
1.28.13 swallowing strained, liq diet, Back L tongue shows poss tumor
2.5.14 Clear CT
2.17.14 Clear PET
3.10.14 Start IMRT

Joined: Jul 2009
Posts: 1,406
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,406
Katy, I was glad to read about the giggling. That's a good sign! I brought my own music and soon enough an audio book. Since I couldn't wear earbuds I plugged my iPod into small speakers that they let me balance on my stomach during the ride. It really got me through it since I was concentrating on the story.

When the burns got especially bad I used Silver Sulfadiazine. That also helped immensely.

As for the anxiety about them leaving you.... yeah, that's certainly there! But as Paul said, they're watching you on the monitor every second you're in there. If anything happens you can be sure someone would be at your side within seconds. I live in LA and was mainly worried about earthquakes! The mind goes to these things. Which is why I distracted myself with the book every day.

Good luck. I'm sure you'll get through it!


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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Joined: Jun 2013
Posts: 262
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Posts: 262
Katy, soon enough it will become routine and even a little boring!

I noticed that some masks had nostril or even full nose openings. I asked the techs to cut nostril openings in my mask and they were happy to accommodate. It helped me feel a bit less "pinned." I don't know if this can always be done, but you could ask if you think it might help you relax.

The weeks will fly by now -- you are on your way!

Lynn


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

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