| | Joined: Mar 2013 Posts: 21 Member | OP  Member
Joined: Mar 2013 Posts: 21 | How tight is too tight? Could they have made a mistake fitting the radiation mask? These were her comments after the dry run:
- the mask was very tight. she had deep impressions from the grid of the mask. She was told to abstain from drinking water before the mask fitting procedure. Is it possible that with her now hydrated + the mask shrinkage it is improperly sized? she notes that they had a very hard time fitting her when the mask was made, and that the technicians had a hard time getting her in the correct position yesterday.
- she feels like it's changing the shape of her nose. Lot's of pressure on the left side.
- neck felt "torqued" and out of alignment during the procedure. She had neck pain for about 2 hours after the procedure.
Any suggestions? I sent the comments above to the doctor for his feedback, but I wanted to hear from others in the trenches.
Little Bird, CG to mother, diagnosed March 15, 2013, age 70, non-smoker, non-drinker
BOT, HPV+
Cisplatin and 35 days of radiation, completed June 13, 2013.
Looks like they got it all. (knock on wood)
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Your poor mother! She is already going thru struggles and she hasnt even begun treatments yet.
In my situation, my mask was snug but not overly tight. I did have a couple waffle spots but they would disappear pretty quickly after the treatment was over. As the treatments went on the mask loosened up.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | 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 | For the first couple of weeks I looked like someone hit me in the face with a tennis racket. Don't worry she most likely will loose weight and those waffle grids will no longer be.
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: Mar 2013 Posts: 21 Member | | OP Member
Joined: Mar 2013 Posts: 21 | Thank you, Christine and David. I read your responses to my mom, and they really cheered her up.
Mom is really scared, but she has a hard time expressing that emotion. It comes out as complaints and negativity at anything and everything. Assuming that some discomfort and tennis racquet face is normal, we might want to look at something for anxiety and/or depression to be taken before the treatments. I will follow up with the doctor to see if physical comfort can be improved too.
Thanks again.
Little Bird, CG to mother, diagnosed March 15, 2013, age 70, non-smoker, non-drinker
BOT, HPV+
Cisplatin and 35 days of radiation, completed June 13, 2013.
Looks like they got it all. (knock on wood)
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Some members have taken anxiety meds to help them get thru their treatments. Its pretty common to need a little temporary help. Being given a diagnosis of having cancer is a very scary event. Check with the doc about helping to ease her fears with some medications. They take a while to work so dont hold off on asking. Many patients are resistant to taking these type of meds but its just another tool to help get the patient thru their treatments and back onto the road of good health. Its not uncommon for caregivers to need this too. Many patients and caregivers will have therapists to help them deal with all the changes.
Best wishes!!!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Christine is so right. Ativan is very very commonly prescribed to help radiation patients relax and lie still. Ask for it. Even a tough guy like me found it helpful for 45 to 60 minute Cyberknife sessions. It works quickly with no bad side effects
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | The mask was very tight for me as well and the tech alleviated the pressure by cutting out the nose. Guess it wasn't needed to keep the thing in place, and it gave me much relief. You might ask about it. Good luck to you both!
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: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 4 | Mine was tight too... Radiation is exact they do not want you to move at all. Others here are right she will likely lose weight and it will become more loose. she should let them know when this happens they may have to make adjustments.
best of 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: 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 | Some treatment centers make cuts in the mask for the eyes, mouth, and this may be of some relief, so you may want to ask about that. Good luck.
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: Mar 2013 Posts: 21 Member | | OP Member
Joined: Mar 2013 Posts: 21 | Thanks everyone. 1 session down; 34 to go! I talked to the tech about the problem - hopefully tomorrow we'll see the nose (maybe more?) gone. I went ahead and got the ativan. If she doesn't take it, I will. ;-) Just kidding, but it would be nice if one of us felt less anxiety!
Little Bird, CG to mother, diagnosed March 15, 2013, age 70, non-smoker, non-drinker
BOT, HPV+
Cisplatin and 35 days of radiation, completed June 13, 2013.
Looks like they got it all. (knock on wood)
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