| | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | Usually my saliva is fair to good(except when I am asleep) , but I can only hike about half as far a I used to on a bottle of water.
Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Gary,
Happy to hear the good report as you approach your 6 year anniversary.
Sorry Ray, but I'm not really up on fluoride products as my hygienists handle that aspect of treatment.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 67 | We haven't talked about this very much on the boards, but I too have unbelievable phlegm at 10 years out. It is so bad that it is actually causing sleep apnea problems for me, that I have not been able to control no matter what the means. I have seen all kinds of docs related to this, some thought I had chronic sinus infections causing it, and antibiotics of all kinds proved useless. Others decided this was chronic radiation induced sinusitis, and would never improve. it shows up on all my scans every year. I started using a CPAP, but unlike the relief this creates for some, when thick mucous is the culprit, it is virtually useless. No one has an answer for me so far. 3 times a night when I enter REM sleep, the apnea event occurs, and a shot of adrenaline hits my heart to get me breathing again, it is just a joy.... Of course everyone knows that in the long run, sleep apena shortens life span and is really hard on your heart. Let alone leaving you chronically exhausted because you never get the REM sleep that lets you recuperate from day to day.
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Well mine is not nearly that bad and is not keeping me awake. When I get up to go to bathroom in am, I just have to scrape the thick stuff off the roof of my mouth and pull out the strand that is stuck to my tongue. If I'm going back to bed, I will brush my teeth and put in partials and this will keep it at bay.
I use GelKam fruit and berry flouride in my trays. This stuff also seems to get my moist saliva going in the morning. You might try a small dab of that at night to see if it loosens some juices. What is a CPAP?
I think I just read somewhere that sleep apnea can be a side effect also. Have you seen a sleep apnea doc? Maybe it is something besides the phlegm that it causing it. It's not like you are not under any stress now. Time to smell a few roses for a few days?
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Mar 2006 Posts: 114 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2006 Posts: 114 | CPAP is Continuous Positive Airway Pressure. It's a mask device people wear at night which forces air in to avoid sleep apnea.
A good friend of mine uses it and has great success with it.
Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | Brian,
That's a shame about your sleep apnea caused by thick mucous. Have you tried Mucinex? I had good success with that when I was cursed with thick mucous during and after tx.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 67 | Yeah I take Mucinex like candy. CPAPS do not generally work for people with my kind of problem, but it was worth a try. Thanks for the suggestion though.
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: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | Brian,
What about sleeping with your fluoride trays? The thought is that having something in your mouth will make your saliva glands work a little harder during sleep time, maybe producing thinner saliva...
I don't know...I'm just grasping at ideas here....
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Ray - are you saying that your mucous got better? How long after treatment was it?
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | The thick mucous (mucositus) should abruptly stop about 6 or so weeks post Tx.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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