| | Joined: Sep 2012 Posts: 64 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Sep 2012 Posts: 64 | I am 19 weeks post treatment and have been taking Pilocarpine. My Doctor told me that it would take one month before I'd feel results and he was right. After a month I now am producing saliva. Not constantly but for a significant time after taking a pill.
Interestingly, neither my Radiation Doc nor my Chemo Doc prescribed it. The ENT Doc that I saw for follow up did.
I certainly recommend the Pilocarpine, I tried four different Acupuncture protocols without success and having a totally dry mouth has been very depressing. The saliva produced is not enough to assist in eating solid foods but does provide a level of comfort.
Stage 3-4 Squamous BOT diagnosed 3/19/12
Molars removed 3/29/12
(Cisplatin) inpatient: 4/11/12-4/16/12; 5/2/12-5/9/12; 5/29/12-6/4/12
Feeding tube: 8/9/12-11/21/12
Radiation 8/10/12-8/29/12
Chemo 1X/week 8/10/12-8/22/12
Last PET/CT clear: 9/17/13
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Thanks. I never used Pilocarpine, but glad it helped you with dry mouth,
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Pilocarpine is also known as saligen.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Oct 2011 Posts: 67 "OCF Canuck" Supporting Member (50+ posts) | | "OCF Canuck" Supporting Member (50+ posts)
Joined: Oct 2011 Posts: 67 | Doesn't it make you sweat like crazy? (I have not tried it)
Pain late 2009. Dx as change in altitude. Sore spot on tongue late 2010. Dx as irritation.
Leukoplakia Bx Feb 2011 - Lichen Planus.
Bx May 2011 - Hyperplasia. Same sample retested as SCC.
June 2011 Rt Hemigloss,ND,rff,33 Rads. Hosp for 15 days w/bi-lateral pneumonia.
T3N1M0 Stage IV.
| | | | | Joined: Nov 2012 Posts: 30 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Nov 2012 Posts: 30 | Why wouldn't this be prescribed to all head/neck cancer patients?
I haven't heard anything about it.
Mike, 55
7/1/12 R Cervicl mass size of lg grape
9/12/12 diagnsd SCC lymphoid tissue level II BOT HPV+ blind primary
10/22/12 7wks rads, 2 cispltn
11/16/12 PEG in
12/18/12 tx end
1/14/13 PEG out
non-smkr, no caregiver
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | I tried it and didnt like it. Being female and trying this medication in the summer didnt work out so great for me. As we all know.... girls DONT sweat (or any other stinky bodily function). The medication made me sweat like a pig even when I was just sitting there in an air conditioned room. I quit taking it shortly after trying it due to the sweating side effect.
Mike, just like everything not all doctors will have the foresight to prescribe this or many other helpful medications/medical equipment. Thats another reason why this forum is so helpful.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Pilocarpine, Saligen, only helps if there is some saliva production left in the salivary gland to help stimulate more production. In some cases, radiation wipes them out completely, so these meds do not work on them.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Lefty: Yes, pilocarpine does help some patients. I'm glad it worked where the acupuncture did not. It's been so long, I've forgotten to post about using it. Heck I even forgot how many times a day I took it and that it helped. (reason for editing this post). guess chemobrain is more of an issue than I realized. In this thread Pilocarpine - 2008 , there is an interesting post that leaving your flouride trays in at night will also increase saliva. Of course now that I can't swallow at all, I have more than enough saliva - but having extensive surgery and then extra radiation to destroy your constrictor muscles is never going to be a popular remedy for dry mouth. Charm
Last edited by Charm2017; 01-11-2013 10:50 AM. Reason: refreshed my memory with old 2008 thread
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Sep 2012 Posts: 64 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Sep 2012 Posts: 64 | Thanks, all. No, It doesn't make me sweat but temps have been below freezing for three weeks.
Re: Chemobrain. At first I thought it seemed to be a temporary effect. Now that I've read that it is destruction of nerve tissue, a kin to neuropathy, I realize how greatly I have been affected by it.
Another thing that the Docs don't tell you before one undergoes treatment.
Last edited by LeftyS7; 01-15-2013 10:22 AM.
Stage 3-4 Squamous BOT diagnosed 3/19/12
Molars removed 3/29/12
(Cisplatin) inpatient: 4/11/12-4/16/12; 5/2/12-5/9/12; 5/29/12-6/4/12
Feeding tube: 8/9/12-11/21/12
Radiation 8/10/12-8/29/12
Chemo 1X/week 8/10/12-8/22/12
Last PET/CT clear: 9/17/13
| | | | | Joined: Nov 2010 Posts: 8 Member | | Member
Joined: Nov 2010 Posts: 8 | I noticed this post on Pilocarpine. I have been on it for 6 years. at first the dosage was 7mg x 3 day right before meals, and I would break out in sweats, my hair would get soaked. I asked my ENT if a different dose was available and he put me on 5mg 4 times a day. really cut back on the sweats and left a dose to take right before bed.
Dwayne Hubbard
SCC T2N0 Left lateral tongue Recurrent 4-5 times 2001-2006
2007- tongue base T2N0 70greys Rad. cisplatin/taxol concurrently
2008-2010 ORN Left Mandible 65 HBO dives with debridement.
6/2010 remove and plate left mandible
12/1/2010 Scheduled for bone graft with rhBMP.
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