| | Joined: Feb 2008 Posts: 1 Member |  Member
Joined: Feb 2008 Posts: 1 | Kristy, Here are a couple of links to some interesting solutions(albeit future)to dry mouth problems. Saliwell http://www.saliwell.com/1_1.asp is a medical company that makes an implant type device that looks very interesting. The second link is a Google search for Dr. Bruce Baum. http://www.nidcr.nih.gov/Research/ResearchResults/InterviewsOHR/TIS032007.htm He is, and has been actively researching gene therapy for salivary gland repair. His research seems most promising for head and neck cancer patients whose saliva glands have been damaged by radiation. I too struggle with dry mouth and the associated dental ramifications caused by radiation, however, the Salogen has allowed me to eat almost anything, as well as return to work full time as an in home salesman. I'm approx 6 months post treatment myself. Here are a few more links that may be of interest to all. Regards, Chris http://scholar.google.com/scholar?q=%22author:B.+J.+author:Baum%22&hl=en&lr=&start=60&sa=N http://www.webconferences.com/nihoba/731_Baum.pdf | | | | | 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 | A solution would be of great benefit to all of us.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 Likes: 1 |
18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking | | | | | Joined: Sep 2007 Posts: 61 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2007 Posts: 61 | This was very interesting-thanks for the info. This is Mary's biggest complaint-the constantly severe dry mouth. Mind you, she still plays raquetball with me-but occasionally we have to stop because her lips are stuck to her teeth!! This works for me because I usually need the breather. :~)
But, seriously, she says it is awful. And it is preventing her from advancing her diet.
Liz
CG to friend Mary. SCC Stage IV-A of rt. tonsil, mets. to lymph node on rt. DX 06/07,tonsillectomy 08/07, Chemo Cisplatin, Taxotere and 5FU X3 cycles; RAD completed 1/20/08 RND scheduled for 3/08. 54yr.old, NS, social drinker.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Tell Mary that her dry mouth will likely get better over time than it is right now, mine did, but it probably won't improve to 100% per Tx.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Mar 2008 Posts: 19 Member | | Member
Joined: Mar 2008 Posts: 19 | Kristy,
could you elaborate more on how Salogen helps with dry mouth (and how it helps to keep pain down re: eating)?
Thanks
Jim04 - oral/gingival SCC in 2004; surgeries, radiation, 2 recurrences
| | | | | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,916 Likes: 63 | Gene therapy holds much more promise in all diseases than this simple appication, even in the survivability of oral cancers. Please check the OC in the news section of the web site for numerous articles we have been posting for more than a year on the NIDCR sponsored work in this area. There is one just from this last week even. Gene therapy, nano particles, and stem cells will likely spell the end of cancers as we know them, let alone salivary function.
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: Oct 2004 Posts: 30 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Oct 2004 Posts: 30 | You'll probably be carrying a bottle of water for the rest of your life. The Biotene wash seems to make sleeping better--mouth doesn't seem to get so dry w/ use of it each time my husband gets up during the night (due to so much water during the day for drymouth and for swallowing his food). It's been 4 years and this is still an issue; but he IS alive! | | | | | Joined: Mar 2007 Posts: 55 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2007 Posts: 55 | I don't agree that you'll be "carrying a bottle of water for the rest of your life!" I don't! Sure, my mouth is dry, I must use liquid to get food down and waking up with my tongue sticking to the roof of my mouth isn't fun, but I do manage to walk through life without being attached to a water bottle. I can even talk for 2-3 hours straight without water these days....and I'm not quite a year out from radiation. Don't forget that we are all individual and our healing is individual.
Lisa
36 years old at diagnosis
SCC of the tongue T2N2bM0 Stage IV
post hemi glossectomy and neck dissection (3/28/07), finished 6 weeks of radiation and Cisplatin x2 6/19/07. Biopsy taken from right side of tongue 7/17/08 - results showed infected abscess and no return of SCC!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | You are surer tough. I have to havw a bottle of water with me at all times. My mouth drys out in a matter of minutes and my tongue sticks to whatever it touches in my mouth. Be it my gums, the floor of my mouth or the roof of my mouth. I ran the weedeater yesterday for a couple of hours, and I needed 3 bottles of water to keep me going along with the biotene. We are all different and unique.
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
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