#80963 09-23-2008 01:05 PM | Joined: Aug 2008 Posts: 16 Member | OP  Member
Joined: Aug 2008 Posts: 16 | I am shocked at how tight my mask is around my jaw bone. Is this normal for the mask to fit so uncomfortably? I've just completed my 4th day of rads out of a total of 7 weeks. I've also just joined on here and am sure I'll get lots of reassurance and help. Good luck to all of you.
Nancy F 66 Tongue cancer T4 N1 M0 Completed 2 3 week sessions of chemo. Shrunk tumor 40%. Then Cisplatin only, 2 weeks on and 1 week off during 7 weeks of radiation.
| | | | | Joined: Jun 2008 Posts: 148 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2008 Posts: 148 | The whole "mask" experience is a bit numbing. You might talk to the technician and your OC about it. Mine was so tight that it left marks on my nose and forehead for several minutes after treatment. I did get them to cut a hole basically where my adam's apple is so I could swallow more comfortably. Good luck to you on your tx.
Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
| | | | | 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 | I also had marks on my face each time I got off the table as if someone had hit me with a tennis racket. Remember they want you to lay motionless so the radiation will be delivered where they want it to go so tight is not a really bad thing. Also you will most likely loose enough weight where your face will shrink allowing the mask to fit less tight. We all had to get use to our masks.
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 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | We all react to things differently -- I never minded the mask -- It fit tight, but that's why it's there in the first place -- However, when they asked if I wanted to keep it as a souvenir, I just pointed to the wastebasket...
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 Likes: 1 | Nancy
Kep in mind that they are working into a 1 mm tolerance so the duty of the mask is to keep you in the same place and position all the time. Mine was a bit snug at first, then the weight started coming off and it did not bother me at all.
18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking | | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | Nancy,
I'm in my second week of rad txs and my mask is really tight. It was tight in the beginning and since then I've gained about 5 or 6 pounds, so since I'm now a bobble-head...you can imagine what mine feels like. They have a hard time putting it on. It's so tight I can't see when they take it off and I also have those marks all over my face. The one thing that keeps me sane is knowing I don't have to be strapped with that mask all day!
Knowing what you're going through...hang tough you're not alone...It'll be over soon....
best wishes,
Raymond
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | The mask has to be tight. Mine felt like someone sitting on my face, but it wasn't unbearable. Go with the flow and it will be over soon.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | I think you are so brave and I wish I could give you a big hug I am waiting my results concerning radiation and I just can't fathom even going here you are doing great keep going....
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | The mask needs to be tight, and it left marks on me too - tight but not painful.
I found a couple of things really helped get through it. I either had music on (I made a cd of some of my favs for them to play when I was in there) or I sang hymns to myself. As we count down the days of treatment, it actually goes by fairly quickly. One foot at a time, one day at a time, you get through it.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Jul 2008 Posts: 228 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | My mask was tighter towards the end of treatments, it would leave marks on the bridge of my nose. To ignore it and the mouth piece I would count the number of times the machine went around that way I knew how much longer I had to go. I also listened to music as well!
Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.
**** Stephanie passed away 12.15.09.... RIP our dear friend****
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