| Joined: May 2013 Posts: 1 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: May 2013 Posts: 1 | Hello, I am looking for some advice on things I can suggest to my Dad to help with the pain and discomfort of the radiation burns inside his mouth. It has been 5 weeks since he completed treatment. He is healing but very slowly, he was told his burns were some of the worst they had seen in quite some time. His saliva glands were damaged so he is also experiencing issues with that. He is not able to eat anything more than Boost, a meal replacement shake, everything irritates the inside of his mouth and throat. He's a diabetic so many of the smoothies and ideas I've seen on other websites aren't useful to him. He is also quite stubborn and lives 5 hours from me so I can't be there to help him as much as I'd like. If any of you have suggestions of things that helped you they would be much appreciated. I know he has pain medication, but I don't know what it is exactly. I read on another post something about hyperbaric oxygen? I may have that wrong but it was apparently to aid in speeding up healing? Any advice you can give will be helpful, thanks in advance!
Daughter of cancer survivor. Dad had tumor at the base of throat. Completed 6 weeks chemo and radiation. Finished 5 weeks ago.
| | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | Hi Sarah,
Sorry to hear your Dad is hurting. We've been there. Along with pain meds, "Magic Mouthwash" is recommended. It's a solution he can swish around his mouth and swallow. It numbs things up nicely and gives you a window to get some food down. He should be rinsing with a solution of water (16oz), baking soda (1tsp), salt (1tsp) and glutamine (5g optional) 4-6 times a day. The key is to stay ahead of the pain. Don't let it get to the point that you're really hurting before you take it.
The HBO treatments you read about are typically used to treat healing issues with post treatment dental work.
Positive thoughts and prayers
"T"
57 Cardiac bypass 11/07 Cardiac stents 10/2012 Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+ Palatine Tonsillectomy/Biopsies 12-21-12 Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13 Emergency Surgery/Bleeding 2/18/13 3/13/2013 30rads/6chemo Finished Tx 4/24/13 NED Since
| | | | 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 | Welcome to OCF! Your father should be on some type of pain meds to help him manage the pain. Many of us have used magic mouthwash to help numb the mouth so we could eat. Its only temporary and will need a prescription to get it at the pharmacy. Magic mouthwash should be swished and spit out, swallowing the formula can numb the throat and he could have issues with choking. Magic mouthwash can have a few different forumals too so thats why some are told to swallow it and other to spit it out. My MM was made up of benedryl, malox and lidocaine.
Hyperbaric oxygen treatments (HBO) are not normally used to recover from chemo and rads. Its most commonly used to prevent osteoradionecrosis by doing 20 prior to and 10 after any dental extractions (Marx Protocol). After rads it can be pretty common to have patients have dental issues and need to have teeth removed.
Time is what it takes to recover from what your father has been thru. Keep up at least 2500 calories every single day and at least 48 oz of water daily for the first year after finishing treatments. It really does take a year to bounce back. Most patients are pretty good 3 months post rads, even better 6 months post rads. It can take a full 2 years for a complete recovery. The sense of taste will come and go for months. Some patients notice subtle changes even 2 years post rads. At that point, its pretty much as good as it will be.
Many patients become frustrated at the speed of their recovery. It can be very disheartening to try and try and still not be well weeks after finishing rads. Adding some high protein whey powder to his diet can help speed heeling. But really good nutrition, water, sleep and time are what it takes to heel. He has been thru alot and his body not only fought the cancer he battled the brutal treatments as well so it will be a while before he is well again.
Best wishes with your fathers continued improvements. 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: Feb 2013 Posts: 78 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Feb 2013 Posts: 78 | Make sure your dad lets the doctors know he is in pain. They may need to increase his dosage, I know I did a few times. I had a long acting (extended release) pain med and one for breakthrough pain (could take before eating).
Andrew age 25
early 10/12 - enlarged lymph node area 01/13 SCC of L tonsil, L BOT, 2 L lymph nodes stage IVa, T2N2bM0, HPV+
2/13 2 doses cisplatin big bag, 2 doses weekly cisplatin + 35x IMRT 4/13 TX finished 7/13 PET/CT - NED!
| | | | 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 | Yes 5 weeks post rad and still mouth sores...he needs to go back to his rad doc. He needs pain meds so he can swallow better and yes to what Christine says re calories.
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 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 | There also could be a coinfection, bacterial, fungal or viral, that can cause pain, ulceration, making eating and swallowing difficult, and needs to be treated with the appropriate meds for each. HBO may be controversial in this regard, during treatment, and have not heard of anyone having it, except for some trial, maybe, for increased oxygenation pre, and duringtreatment to the tumor to prevent tumor hypoxia since cancer thrives in low oxygen, which showed was not that effective, and other meds were used instead. HBO is only at certain institutions, takes 1-2 hrs daily treatment.
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: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Viscous Lidocaine may also help on the worst spots - ask the doctor about that.
As long as you dad is getting calories and liquid in, meal replacement shakes are fine for the short term. My husband was still on a liquid diet 6 weeks out, but we were experimenting with home-made protein shakes that tasted less bad than the canned variety. I am guessing that you could come up with a simple recipe that would be ok with the diabetes. I made packets of ingredients for my husband to take to work to add to milk and (eventually) canned fruit in the departmental blender. Canned peaches were the mildest. Whey powder, Benefiber (if he is still on narcotic pain killers), sugar free Carnation Breakfast Essentials could be added to milk. He should have the services of a nutritionist available - that would be another source for a diabetic-friendly formulation. Best wishes to you and your Dad - slow and steady wins the race. Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Jan 2011 Posts: 168 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jan 2011 Posts: 168 | Sorry to hear about your Dad. Magic Mouthwash and pain meds got me through a very long recovery. It took me about three months to begin to even remotely feel like myself. I think it took me two months before I could eat anything at all, and I only forced myself because I hated my PEG and they wouldn't take it out until I could eat by mouth again. The Magic Mouthwash really is magic. Also, please tell your Dad that he will heal. I had a hard time believe it for myself, when I was in the worst of it, but it is true. I will say prayers for him and you. -Michelle
SCC left tonsil, stage IV, HPV+, metastatic to one lymph node. Biopsy 12/23/10; tonsillectomy 1/13/11; DX 1/25/11; Peg in 1/28/11. Peg out 6/29. TX 1/31/11-3/21/11: 35 IMRT plus 3 Cisplatin. Pet-Scan 6/20/11 = CLEAR! Three years out, learning to live with the long-term side effects of radiation while reminding myself to feel blessed.
| | | | Joined: Apr 2013 Posts: 319 Likes: 1 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 Likes: 1 | I'd like to expand for a moment on what Marie said about shakes as meal replacements. I had a conversation with my RO on this subject, and he cheerfully advised me to stay on them as long as I liked as long as I made sure to get enough every day. Healing is a high-energy activity. Anyway, I was on them for more than 90 days. I was fortunate in that I totally lost my sense of taste very early in the process, so I was able to drink Jevity (the canned formula used to feed patients with a PEG (feeding tube)), and my RO just happened to have a couple of cases left over from a Patient who never wanted to see the stuff again. (I was less fortunate in keeping it down, due to the extreme nausea from Cisplatin, but that is not a problem related to or caused by the liquid, as opposed to solid, nutrition.) Best of luck to your dad, he's lucky to have you in his corner!
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
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