| | Joined: Nov 2008 Posts: 35 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Nov 2008 Posts: 35 | This is my mom's 2nd go around with radation. The side effects this time around are very visible - a great amount of neck, should area/ and side of face are visibly burned and it is very hard to look at.
She has two more sessions of radiation and am not sure her skin will allow her to go through any more.
CG to mother. Diagnosed with SCC August 08. Surgery Sep 08 to remove right mandible and replace it with fibula from left leg. Also neck dissection with one pos. node. Rad/Chemo with cisplatin completed Nov 30, 2008.
Passed away Dec 15, 2014
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Here is what I just replied to another member whose husband was getting radiation burns...
If your husband has not been using cream for his neck he should start immediately. I used Beta Val (prescription). There are many different ones available, ask the doc what he recommends. Always pat it on gently, never rub it in, let the cream soak into his skin and reapply. Never use the cream a few hours prior to going to rads but immediately afterwards dab some on.
Focus on what is within your control... your mothers intake. Every single day she should be taking in a at least 2500+ calories and 48-64 oz of water. By working hard at getting the proper daily amounts it will make things easier.
If your mother is in pain, speak up and tell the doc. Nobody should have to go thru this in pain, it does not help the patient at all to suffer. Many have used the fentanyl patch. If she would get the patch, make sure to follow directions exactly. Never ever fold, bend, tear, cut the patch. Always place it on a different place every 3 days. It will take about 24 hours to kick in but the patch simplifies the pain meds by only occasionally needing extra when the pain gets severe.
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: 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 |
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: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | You might also ask about Silver Sulfadiazine. It's a thick cream and feels really good going on.
Good luck and hang in there!
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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | I used Aquaphor twice a day and had no problems other than a dark tan on one side of the neck. As your's is advanced you may need the other meds listed above. Just be diligent in their application and never before treatment.
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | I only used Aquaphor or Cetaphil also as my radiation burns were not bad. Some I hear needed other medications, which should be prescribed by your doctors, especially for open or seeping wounds.
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
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