| |        |   |   |  |   |  Joined:  Jan 2014 Posts: 17 Member |   | OP   Member 
 Joined:  Jan 2014 Posts: 17 |  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 Posts: 1,294 Likes: 1 Patient Advocate (1000+ posts) |   |   Patient Advocate (1000+ posts) 
 Joined:  Jan 2013 Posts: 1,294 Likes: 1 |  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, 1955
 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
 |  |  |   |   |   |  |   |  Joined:  Jan 2014 Posts: 17 Member |   | OP   Member 
 Joined:  Jan 2014 Posts: 17 |  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.    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: 4 Patient Advocate (old timer, 2000 posts) |   |   Patient Advocate (old timer, 2000 posts) 
 Joined:  Jul 2012 Posts: 3,267 Likes: 4 |  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 Member |   | OP   Member 
 Joined:  Jan 2014 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: 1,409 Likes: 1 Patient Advocate (1000+ posts) |   |   Patient Advocate (1000+ posts) 
 Joined:  Jul 2009 Posts: 1,409 Likes: 1 |  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 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:  Jun 2013 Posts: 262 Gold Member (200+ posts) |   |   Gold Member (200+ posts) 
 Joined:  Jun 2013 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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