| Joined: Jun 2014 Posts: 13 Member | OP Member Joined: Jun 2014 Posts: 13 | seems like once one thing gets better something else gets worse. Dad's dry mouth wasn't too bad after radiation stopped. Now two months later it suddenly got worse, he has to sip water constantly. Is this normal? He only had radiation on one side and dentist recently said his mouth didn't look that dry, but dad says it feels like a desert.
robin My dad age 62 lymphnodes in left cheek removed (two cancerous) chemo/radiation ended May 31, 2014
| | | | 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 | Robin, yes this is normal. Most patients will have thick gunky mucous immediately after rads ends up until about one month post rads. That seems to disappear overnight to be replaced by dry mouth.
To help with dry mouth try having your father sleep with a humidifier, rinse with salt, baking soda and water mixture and ask the doc for a prescription to try pilocarpine. This can take weeks to work, there are mixed results with this medicine. It didnt work for me but others have praised it. He can also chew gum with xylitol in it to help ease the dry mouth.
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: Jun 2014 Posts: 13 Member | OP Member Joined: Jun 2014 Posts: 13 | Christinteb
Is this a permanent condition, or will it improve?
robin My dad age 62 lymphnodes in left cheek removed (two cancerous) chemo/radiation ended May 31, 2014
| | | | 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 | It should improve in time, but probably not back to exactly how he originally was prior to treatments. Many OC patients will continue to have long lasting issues with dry mouth. You will see them always carrying a water bottle everywhere they go.
A complete recovery can take every bit of 2 full years. This is mostly having to do with sense of taste, fatigue and dry mouth. Recently a long time survivor (8 years post rads) reported she just had a big increase in saliva. She said she was undergoing hyperbaric oxygen treatments (HBO) for another condition and one of the side effects was her saliva is now functioning like it had before rads.
Since your father is only 2 months post rads, expect to see many improvements over the next few weeks and months. Its important to keep his calories and hydration up. Every day for at least the next year he needs a minimum of 2500+ calories and 48-64 oz of water. OC treatments are hard to bounce back from, with proper intake it will make everything easier. Hang in there, the worst is behind your father.
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 | This recovery can take every bit of 2 years. I didn't see ANY improvement in my dry mouth or taste until my 4th month PT and additional improvements came in spurts at 5, 14 and 24 months so the both of you need to be patient.
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 | Sometimes it's two steps forward, and one step back. As mentioned, adequate hydration is important, constant rinsing, brushing, drinking water before sleeping, using a humidifier, some sleep with their mouth open, so thay increases dry mouth, but there are snoring chin straps that may help if the doctor so approves. Milk enzymes replicates saliva, and lasts longer hydrating than water. Lemon drops candy, lemon water helps increase saliva, as does chewing gum, like ones containing Xyletol. Some medications cause mouth dryness, and illnesses, like kidney disease or impaired kidney function.
I hope this helps.
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: 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 | Typically the worse part of this Tx doesn't begin until AFTER the radiation has stopped. Most of us suffer the worse the 2 to 3 weeks post radiation.
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: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | It is early days in his recovery so side effects abound for awhile. Mark the timeline a year out and that is a reasonable time to let the effects settle.
Dry mouth is worse for some while sleeping. If this is the case, mouth breathing can be a source of issues. If you live where it is dry, that can affect it. Some try vaporizers in the room to ease the dryness in the air.
Gum and certain lozenges as suggested.
Good luck, Don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | Hi Robin - I'm 6 months post radiation and the dry mouth is beginning to get better. Ice water seems to do better than room temp water. I found that excess water consumption also helps with the gunky mucous/sinus that was a problem for a couple of months. It just clears easier from nose and throat when I really push the water.
Tell dad to keep fighting
Tony
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
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