#53940 11-24-2007 07:56 AM | Joined: Aug 2007 Posts: 7 Member | OP  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)
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#53941 11-26-2007 05:48 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
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#53942 11-26-2007 06:17 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"
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#53943 11-30-2007 02:55 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. | | |
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