#53940 11-24-2007 06:56 AM | Joined: Aug 2007 Posts: 7 Member | | Member
Joined: Aug 2007 Posts: 7 | Not really an adjunctive therapy... more like an alternative form of conventional treatment for post-radiation dry mouth.
I had to do the leg work on this, but it paid off. Although not generally available, I was able to show my MO published trial results and convince him to write a prescription:
Pilocarpine 1% solution by volume, 1 teaspoonful PO bid (swish/spit after 2 minutes)
The advantage of the mouthwash version is that it is instant acting, reportedly long lasting, and has none of the side-effects of the oral (pill) version. The studies I found online had partipant results claiming 12-36 hours relief from just one use of the mouthwash solution. My results were not as good (~ 6hrs), but enough so that I have been able to cut my oral Pilocarpine use down to one 5mg pill/day, and sleep through the night (no more frequent urination and phlegm buildup because of the oral Pilocarpine).
There are a few downsides to the mouthwash though.
1) You'll need to find a compounding pharmacy that will work with you to come up with a palatable formulation. A standard pharmacy can't fill the Rx.
2) Liquid Pilocarpine has a short shelf life, so you won't be able to purchase more than a 45-60 day supply at a time.
3) It's expensive...and most insurance doesn't cover it (yet). Shop around, as price varies considerably.
I hope this helps someone... it did me!
-Bob
Stage 3 SCC survivor, left tonsil primary (T2 N1 M0)
| | |
#53941 11-26-2007 04:48 AM | Joined: Apr 2007 Posts: 27 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Apr 2007 Posts: 27 | Bob
I'm very interested in what you have found with Philocarpine mouthwash. Would you send out a pointer to the research you mentioned?
thanks
marilyn
dx: Stage 3 T2N2aM0 Left tonsil, base of tongue, 1 left node. HPV positive.
tx: Tonsilectomy (left) then Cisplatin x2, Erbitux x7, IMRT x35
Phase 3 clinical trial. Completed 6/28/07
| | |
#53942 11-26-2007 05:17 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Yes, I'd like a reference to the published trial results too since I might be able to convince my ENT to help me get this if I have the data in hand......
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | |
#53943 11-30-2007 01:55 AM | Joined: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 Likes: 1 | Interesting !
Good catch Bob
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: Oct 2006 Posts: 6 Member | | Member
Joined: Oct 2006 Posts: 6 |
Kristy N
Stage III SCC base of tongue survivor, 41 treatments IMRT, 9 treatments Erbitux. Completed 11/29/06. Ex-smoker, ex-drinker.
| | | | | Joined: Feb 2005 Posts: 118 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2005 Posts: 118 Likes: 1 | PO BID = by mouth twice a day
Be well. Zenda
12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.
| | | | | Joined: Dec 2006 Posts: 32 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Dec 2006 Posts: 32 | Hello Bob,
I am writing regarding your post about the mouthwash version of Pilocarpine (Salagen). My husband Ken still has no saliva after 4 yrs. Oral Salagen does not seem to help and we have tried many other products. Nothing works. I saw a pharmacist today who said he could mix the Pilocarpine solution but he said he needs to know what else is mixed with the solution? You said 1% solution by volume-with what is it mixed?
Hope you see this post and can help.
Thanks.
Linda K.
| | | | | Joined: Dec 2006 Posts: 32 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Dec 2006 Posts: 32 | Hello BOb,
Thank you for your reply regarding the Pilocarpine solution. My husband drinks water 24/7 and chewing gum helps at times. After 4 yrs. he still gets a lot of phlegm. We did try a new product called Caphosol but expensive. It did help get him through the night without having to gargle.
He has never tried Mucinex but he is on a lot of medication so we have to be sure it does not interfere with any of his meds.
I may have my pharmacist call the pharmacy you mentioned. At least he can give it a try.
Thanks for your help.
Linda K. | | |
| Forums23 Topics18,286 Posts197,241 Members13,439 | | Most Online2,386
Nov 19th, 2025 | | |
This is another custom island. This one could be used for ads. This spot is one of the best places for ads on your site to be placed. This can be enabled/disabled on a per forum basis.
| | |
|
