| Joined: May 2013 Posts: 4 Member | OP Member Joined: May 2013 Posts: 4 | My brother is about to begin week 3 of rad and already his mouth and throat are fried. Nothing eases the dry burning pain in his mouth and throat. Lips are also dry and painful. Every day he eats less. Swallowing is extremely difficult. If it is this bad now I am not sure he will complete his treatment. He seems to think quitting is an option.
He drinks constantly, uses Biotene and rinses with the water, baking soda and salt solution. So far his diet has consisted of soups, very moist casseroles and mashed potatoes and gravy. Today he could not even handle these.
He has spoken with his RO and ENT about this but they tell him to continue using the Biotene. Are there meds his doctor could prescribe? Are prescription pain meds like codeine or hydrocodone effective in relieving the pain and burning?
Sister to brother with OC Dx invasive squamous cell carcinoma Stage IV | | | | Joined: Feb 2013 Posts: 78 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Feb 2013 Posts: 78 | He should ask for a prescription for magic mouthwash (a mix including lidocaine) to numb the mouth. I also used viscous lidocaine.
On pain meds there are a variety of options. Many are put on a fentanyl patch. Others take oxycontin or oxycodone. Id make sure he tells his doctor he is in pain asap so he can get it managed. My doc was able to write me prescriptiona same day when I needed more relief.
The next weeks won't be fun but with proper prescriptions it is doable and he will make it through treatment.
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: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2012 Posts: 162 Likes: 1 | Hseals, that was the part of treatment that most scared my husband. Here's what he used to deal with mouth sores:
1. Rinse with 1:3 hydrogen peroxide solution 2. Magic Mouthwash (numbed his mouth) 3. Muguard (coated his mouth)
He also rinsed several times a day with Caphosel, artifical salivia. As well, he kept his lips well coated. The other thing that helped a ton, he slept at night with a c-pap strap on that kept his mouth closed. My husband had some mouth sores, but very little compated to others on the same treatment cycle at U of C. Hope some of this helps, Ana
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still 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 | He needs tons of calories (I say 2500 to 3000) each and every day during and after this Tx as well as at least 48 ozs of water daily. There are high caloric canned drinks, like Boost VHC which has appx 560 cals in a small 8 oz can. That means he only has to swallow appx 5 cans a day for the calories. Believe me things will be better if he feeds and hydrates his body.
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: May 2013 Posts: 4 Member | OP Member Joined: May 2013 Posts: 4 | Thank you everyone. Took some notes and researched all of your suggestions. Now my brother has something specific to ask for. Bless you all.
Sister to brother with OC Dx invasive squamous cell carcinoma Stage IV | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | My son had good results with the Magic Mouthwash, although the ingredients can vary from what I understand. After a while it didn't seem to work as well and he also had good results with something that was over-the-counter at Walgreens. Later, he went back to Magic Mouthwash and it did help him again. What he told me is that right after taking the Magic Mouthwash, he tried to hurry and take in as much nutrition and water as possible before the numbing effects wore off. Sometimes you have to try different things. That applied to other meds as well, in my son's experience. The doctors would start with the least expensive and move up to more expensive meds if one didn't work. There is always something else to try if the results with one are less than expected. Everyone reacts differently.
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: 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 | Many members have found it much easier to get thru rads when they get hydrated a few times a week. Dehydration (and malnutrition) can be a huge problem for OC patients! Ask the doc for a prescription for the hydration.
If your brother is in pain make certain he is taking pain meds. Some guys try to tough it out but it does absolutely no good at all to be hurting, its actually detrimental to the patient.
Best wishes with his upcoming treatments. 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: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2012 Posts: 214 Likes: 1 | By Week 4, I was pretty much down to drinking Boost. It hurt but I chugged it. I made it to week 6 and the pain was unbearable and I was no longer get in what I needed. At that point I went to the PEG. Eat as long as you can, the drink as long as you can. Getting a peg tube may take some time so keep that in mind. IMO, the most important rule is get your water and cals, then don't miss treatments. Peg tubes sucks but if he is not eating and drinking and your out of effective options get the peg.
Hockey Dad 43, No smoke, Small BOT HPV+16 8/30/12 Biopsy found SCC in Lymph node (removed) 9/19 DX 4a T1N2aM0 10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15) PEG tube in 11/7. Out 1/4, Back at work 2/4/13 PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | 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 | As mentioned, there are a variety of prescription rinses, otc products to help with dry mouth, home remedies, and pain meds on the pain ladder scale. Also common is thrush, a fungal nfection, and or a bacterial, viral infection that needs to be treated with appropriate meds, that can contribute to pain, difficulty eating swallowing. If left untreated, theyncan go septic through the mouth ulcers, esophagus, stomach, into the blood, and difficult to treat. I would tell the dr of anything unusual. Good luck with 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
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