| | Joined: Jun 2009 Posts: 71 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Jun 2009 Posts: 71 | Hi You All,
I had an idea that may be crazy. I suffer with the saliva coming from my lower jaw. I have received the max amount of radiation to my lower jaw(bottom teeth on down). The saliva is way to viscous for me to swallow even with water. I asked my ENT about removing the glands causing the bad saliva. He looked puzzled and said it could be done but that he would prefer to eliminate their output as opposed to actually removing them.
Can you guys shed any light on my options and sanity?
Thanks for your patience.
mark
11/1999 SCC tongue - surgery
1/2000 Met(s) in lymph nodes - modRND
2/2000-4/2000 RT ~6 weeks
end of 2006 SCC tongue - surgery
1/2008 SCC BOT - surgery / PEG installed
2/2008 chemo & RT
4/2008 last time I consumed solid food by mouth
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Mark
First, belated congratulations on your success in swallowing thin liquids. Despite 32 sessions of VitalStim and following the NIH clinical trial protocols, no such luck for me. But you are one of the few posters who understands from experience the day to day hassles of being on a feeding tube. Two and a half years is amazing. It's been 21 months for me, and I have been able to ditch the feeding bags and go totally syringe/bolus.
But on to your mucous. As you imply with your question mark, mucositis is not the medical term for excess mucous and saliva. I thought that it was when I joined OCF and couldn't understand why posters advised me about treating ulcers when I was drowning in mucous and saliva. Very confusing and counter intuitive. Mucositis is instead ulcers in the mouth [quote][As a result of cell death in reaction to chemo- or radio-therapy, the mucosal lining of the mouth becomes thin, may slough off and then become red, inflamed and ulcerated. The ulcers may become covered by a yellowish white fibrin clot called a pseudomembrane. Peripheral erythema is usually present. Ulcers may range from 0.5 cm to greater than 4 cm. Oral mucositis can be severely painful][/quote]
Have you tried a "spit bucket"? Seriously, I just carried around at first a huge cylindrical igloo type, but graduated to an innocuous and very mundane super coffee travel mug. Very easy to spit out that nasty stuff and cap it too. I'd think twice about surgery because of potential complications.
I'm not sure what to make of your radiation remark as I have had 97 GY of radiation, well over the "maximum" and I still have nasty mucous and saliva issues.
Anybody who can deal with a feeding tube as long as you have, has to be able to deal with this.
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: 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 | I carried a small styrofoam cup in my pocket and used it constantly. Uck!
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | LOL then we think alike David as I did the same. Hell, people thought it was coffee..
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2009 Posts: 71 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jun 2009 Posts: 71 | Jim & David & Charm - Thanks for commenting. I really do appreciate you guys trying to help. I understand the spit cup. I keep three in constant rotation. Most people don't pay much attention. There is a bit of comical irony living in the deep south. I have had many comments that my spit cup is no different than a tobacco chewer's. I laugh inside at the comments as my eyes roll.
Jim - thanks for clarifying the mucositis term up for me. I was looking for a word to describe this thick snot like stuff in my mouth and it sounded right.
My comment about the amount of radiation was a memory about my last treatment. The doc said "you are done" a day early from the plan. I asked how and she replied you have received the maximum for this???? I have not kept track of the total delivered GY number. I will try to find out soon and let you know.
Drinking water is comical. My best friend says it looks like a crane eating a fish. That is ok because I'm really enjoying the water in my mouth.
I'm waiting to hear back from my ENT about the saliva and surgery. I'll let you guys know what he says. Fingers crossed that he has good news.
I'm scheduled for a fourth attempt to dilate my esophagus this coming Friday. Wish me luck.
Last edited by airkitty; 12-11-2010 09:37 PM.
11/1999 SCC tongue - surgery
1/2000 Met(s) in lymph nodes - modRND
2/2000-4/2000 RT ~6 weeks
end of 2006 SCC tongue - surgery
1/2008 SCC BOT - surgery / PEG installed
2/2008 chemo & RT
4/2008 last time I consumed solid food by mouth
| | | | | 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 | We are told that the max rads that we can receive to one area is 70 to 72 gys which is exactly the amount they give us over the 6 to 7 weeks of Tx. We have had many though that have had reradiation but I'm not sure is they reradiated the same areas or close but different areas. These are decisions that should come from qualified and EXPERIENCED RO's.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I remember calling thick stuff we spit up as kids "Hockers" LOL and tried to see who could spit them the furterest.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | |
| Forums23 Topics18,252 Posts197,145 Members13,330 | | Most Online1,788
Jan 23rd, 2025 | | |
|
