#68964 01-31-2008 07:39 AM | Joined: Jan 2008 Posts: 67 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jan 2008 Posts: 67 | Hi i wanted to know if anyone else has heard of this? my Dr gave me some to try yesterday it is supposed to help with saliva production?
thanks for reading
Age 40 Diagnosed with stage 4 SCC tongue, sept 07 started 35 radiation treatments and 3 chemo Had my first follow up PET - got the all clear 17th April 2008. 26th Had my PEG tube removed...eating almost everything. Was hard but learned to eat without saliva, it's so good to chew and swallow food!
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | New one on me aunty. I'll watch for the answer too LOL
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: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 622 Likes: 1 | Most importantly
How does it taste ??? 18 YEAR SURVIVOR SCC Tongue (T3N0M0) diag 06/2006. No evidence of disease 2010 Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.� Stephen Hawking | | | | Joined: Jan 2008 Posts: 67 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jan 2008 Posts: 67 | Thanks for the replys... its not bad at all it's a very small white pill about half the size of a tictac you roll it around your mouth about 6 times a day. It is better than the mouth wash but still stings a little bit, it almost fizzes in your mouth, not bad and so far i have to say it works, i was suffering from very dry mouth and throat so far my mouth has been wet all day ...... is it the pill???? i will let you know i have 100 of them.
i know my clinic said i was a tester for them maybe its new ?
thanks again
Age 40 Diagnosed with stage 4 SCC tongue, sept 07 started 35 radiation treatments and 3 chemo Had my first follow up PET - got the all clear 17th April 2008. 26th Had my PEG tube removed...eating almost everything. Was hard but learned to eat without saliva, it's so good to chew and swallow food!
| | | | Joined: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 622 Likes: 1 | 18 YEAR SURVIVOR SCC Tongue (T3N0M0) diag 06/2006. No evidence of disease 2010 Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.� Stephen Hawking | | | | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | Ironically this pill did not have to be listed as an Rx drug based on what it contains, and that was a decision made by the manufacturer, a positioning thing perhaps to separate it from others like it that are OTC. I tried it when the company first came out with it, and we even listed it on the products section of our web site for about 6 months a year ago. I knew a bunch of people that tried it, no one really found huge changes as a result of its use, and neither did I. The small levels of success that some of the people had, and I mean really small, could just have easily been attributed to subjective impressions or placebo effect. If your mouth turns into Niagra Falls let us know, if your outcome is more like what I have described please tell us that as well.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Jan 2008 Posts: 67 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jan 2008 Posts: 67 | Hi only me again, well i stopped using the pill as it was making my mouth sore especialy the roof of my mouth, but all day today my throat and mouth where really dry again, tonight i use a pill and my mouth is moist?, maybe this is no good if your looking for full saliva production but i think it really works in my case, i had full mouth and throat radiation i think this is why i am suffering from such dryness ? see how it goes.....
thanks for the replys
Age 40 Diagnosed with stage 4 SCC tongue, sept 07 started 35 radiation treatments and 3 chemo Had my first follow up PET - got the all clear 17th April 2008. 26th Had my PEG tube removed...eating almost everything. Was hard but learned to eat without saliva, it's so good to chew and swallow food!
| | | | 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 is interested in trying this Numoisyn - Says he wakes up at night feeling like his mouth is a dry paper towel. I can't seem to find what is it made up of - is it a natural ingredient or chemical? How does it react with other medications? Is it available OTC?
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: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I get the full mouth and throat rads too. I hurt big time when I sleep and nothing seems to help. I get up a few times a nite and rinse with biotene, which helps for an hour or so, but the pain and dryness return. Try and keep an eye on your mouth, might be the blisters developing like mine are. I never even thought about blisters until I was told I had them yesterday.
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: 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 | Aunty,
Probably 80% of us had "full mouth " radiation as you call it and we all suffered from dry mouth especially right after radiation ends. I still have some dry mouth issues but no where near what I had at your stage of recovery. Each of us can recover differently but we all share one thing in common and that is it takes all of us a long time to recover so give your body time to heal itself.
Now there are 2 different types of rad Tx normally given to OC patients. Old school or XRT and new school, IMRT. Until 4 or 5 years ago XRT was standard and now IMRT is standard. IMRT is a more focused beam allowing better targeting and therefore less damage to otherwise good cells so patients that received XRT usually suffer more adverse side effects including worse dry mouth than patients that received IMRT. Adverse side effects also depend upon many other variables including tumor location, area radiated, surgery and patient health.
Hang in there, it will get better.
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.
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