| Joined: Jun 2012 Posts: 31 Contributing Member (25+ posts) | 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 Member | OP 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) | "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) | 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) | 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) | "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) | "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 Member | OP 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) | "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
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) | 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
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