Previous Thread
Next Thread
Print Thread
Page 3 of 4 1 2 3 4
Joined: Jun 2012
Posts: 31
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Jun 2012
Posts: 31
Wishing you a speedy recovery and continued strength during the treatments. Stay positive, stay strong!


Tim D., 43, married (Maurine), San Antonio, TX. Two-time OC survivor, first diagnosis May 2010 - partial glossectomy + neck dissection (17 nodes), recurrence Jan. 2011 - chemo + 2nd neck dissection (18 nodes) + radiation, completed treatments 4/28/11, PET/CT 12/23/11 - clear, scans 6/29/12 - clear
Joined: Aug 2012
Posts: 20
DeniseM Offline OP
Member
OP Offline
Member

Joined: Aug 2012
Posts: 20
Tomorrow will be the meeting with the RO to fit the mask and outline the schedule and next Tuesday with the MO. Must say I'm nervous about being fitted for the mask but I am prepared so hopefully I will do Okay. Also getting nervous about what eating will be like once treatment begins. I've read a lot of stories/cases here so I am getting some ideas about what to expect but apprehensive all the same. I am really trying hard to stay positive and not feeling sorry for myself but same days it is hard. Never really been scared about dying before, but this time around does have me thinking about it more. Thanks All for the encouraging words and the great information.


Female 47 former smoker (quit in 1986), very light drinker. 1st diag 8/1/11. Surgery 9/6/11 SCC L BOT Tongue T1N0MO stage II w/partial gloss with no rad or chemo follow up. Recur 8/16/12 T1N1M0 - stage III. Neck dissection surgery 8/29/12 with 35 sessions of rad and 6 chemo beginning 10/8/12.
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Try not to fret - usually its about week three things become unpleasant. The mask is something you have to get used to - try to close your eyes and daydream through it. I meditated. Good luck!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Re the mask, just prepare yourself for a very confining moment. Most here were just unprepared for that experience and that made it worse.

Re the food and Tx issues, you will loose your taste and appitite and you will loose a lot of weight and will regain most of your taste, appitite and weight but very slowly over a 2 year period so the advice we give everyone at your stage is to eat all your favorite things without any of the normal concerns. My taste started to go about the 2nd week of rad and it was really frustrating to put something in my mouth knowing what it was going to taste like but then realizing what I just put in my mouth tasted like crap! Do yourself a favor and eat whatever you want; however much you want and when you want it until it happens to you. Hot Fudge Sundae for Breakfast!


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: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
About the mask fitting, you could ask if they provide music or you could bring your own CD for them to play. The music helps to distract you and have an idea how long it takes and how close you are to finishing. Also you might be able to listen to an audio CD of a favorite book. If you get really anxious, ask if they can give you something to calm you. Hope everything goes just fine for you!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Joined: Apr 2011
Posts: 131
"OCF across the pond"
Senior Member (100+ posts)
Offline
"OCF across the pond"
Senior Member (100+ posts)

Joined: Apr 2011
Posts: 131
You will be fine! It doesn't take that long and isn't too uncomfortable. I used to play games in my head countries or animals for each letter of the alphabet! Or listen to music but I found that made it seem longer for me. Good luck with it all soon it will be a distant memory x


Scc nasal cavity /hard palate
Surgery removal of septum and roof of mouth 15/3/11 cl margins
Rt and cisplatin 6 weeks starting 24/5/11
Obturator

Age 45
Joined: Oct 2011
Posts: 67
"OCF Canuck"
Supporting Member (50+ posts)
Offline
"OCF Canuck"
Supporting Member (50+ posts)

Joined: Oct 2011
Posts: 67
They had a radio on which was nice. After a few sessions I started counting the zaps. The machine made a noise each time it gave a dose of radiation. There were 8 zaps, so I would just count them to know how much longer it would take. 7 more, 6 more etc. It was easier for me to know I could make it and just relax!


Pain late 2009. Dx as change in altitude. Sore spot on tongue late 2010. Dx as irritation.
Leukoplakia Bx Feb 2011 - Lichen Planus.
Bx May 2011 - Hyperplasia. Same sample retested as SCC.
June 2011 Rt Hemigloss,ND,rff,33 Rads. Hosp for 15 days w/bi-lateral pneumonia.
T3N1M0 Stage IV.
Joined: Aug 2012
Posts: 20
DeniseM Offline OP
Member
OP Offline
Member

Joined: Aug 2012
Posts: 20
Well that actually went pretty well but I will need a Xanax to get through the treatments. No way can I stay clam for 20 mins since I'm VERY claustrophobic. They did say I can bring my laptop to play music so that may help some too. At this point I'm just ready to begin so it can behind me and the healing can begin. Thanks everyone for the advise, it has really help and thanks Davidcpa for the "Okay" to have hot fudge sundaes for breakfast! I've been trying to get a lot of vitamins, grains and fiber but have to confess I have had a lot more ding dongs and frappes lately too!


Female 47 former smoker (quit in 1986), very light drinker. 1st diag 8/1/11. Surgery 9/6/11 SCC L BOT Tongue T1N0MO stage II w/partial gloss with no rad or chemo follow up. Recur 8/16/12 T1N1M0 - stage III. Neck dissection surgery 8/29/12 with 35 sessions of rad and 6 chemo beginning 10/8/12.
Joined: Oct 2011
Posts: 67
"OCF Canuck"
Supporting Member (50+ posts)
Offline
"OCF Canuck"
Supporting Member (50+ posts)

Joined: Oct 2011
Posts: 67
Sometimes they cut holes in the mask for your eyes. The technicians said they sometimes do that for clautrophobians. (Is that even a word?)

I ate a lot of Hagen Das smile


Pain late 2009. Dx as change in altitude. Sore spot on tongue late 2010. Dx as irritation.
Leukoplakia Bx Feb 2011 - Lichen Planus.
Bx May 2011 - Hyperplasia. Same sample retested as SCC.
June 2011 Rt Hemigloss,ND,rff,33 Rads. Hosp for 15 days w/bi-lateral pneumonia.
T3N1M0 Stage IV.
Joined: Jul 2012
Posts: 28
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Jul 2012
Posts: 28
the center i go to gave me a flexible ring to play with during my treatment today. i questioned it as i had never had it before. they said it was to keep my hands busy. it worked. i wrung that thing out and all my frustration from the treatment went to the ring. maybe you can ask if they have something like that.


Age 35, Former smoker/drinker HPV+
Ear Ache 5/12
GP for ear ache 6/18
ENT for ear ache 7/12
CT shows cancer 7/12
Biopsy 8/12
diagnosed SCC
Base of tongue right side
Barely crossed midline
Nodes involved
PEG 9/12
35 IMRT start Sept 6th
Cisplastin x3 1 down 2 to go
Page 3 of 4 1 2 3 4

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,924
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5