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#80649 09-18-2008 04:41 AM
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Ray1971 Offline OP
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Hi,

My RO gave me a script for pilocarpine to help with future dry mouth. Supposedly, the way it works is it makes massive amounts of saliva and sweat. It keeps the saliva glands working and producing hard and hopefully they continue to make some amount of saliva through rad txs. He also told me to drink at least 64oz of water a day in order to stay hydrated and to keep me swallowing...I was doing a solid 48 a day. If this thing goes on any longer I'll need a full time staff!

Have any of you used and had luck or no luck with pilocarpine? I searched the site, but it didn't come up.

Thank you,

Raymond




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
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Hi Ray

Do a search for saligen. That's the brand name for the generic pilocarpine.

You'll find a lot of info.

I just stopped taking saligen. Seems my saliva glands are starting to come back into focus a bit. No where near pre-treatment, but a whole lot better than it was. Now I just use my Biotene mouthwash if I get a bit dry, especially at night.



9 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.�
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Ray,

Yep you better start assembling that full time staff now!! LOL


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.
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Ray,
I took Salagen during treatment and for about 2 years after. I have a fair amount of saliva so I am fairly confidient it helped. The sweating can be annoying but tolerable. Mine would occur about 30 minutes after I took the dose and last about 5 minutes. If it gets too bad, cut back on the number of times you take it. It's been since 1997, but I think I took 5mg tablets 3 -4 times a day. Give it a try. Beats having a bone dry mouth.

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
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Ray,

I have been taking it since 1 month post treatment and now I am at 13 months post treatment. It seems like I only get dry mouth when I sleep with my mouth open. I started running/jogging back in February at 6 months post treatment, and have been 5 days a week since then. I am not experiencing any dry mouth when I run. I can't say if it is the medicine working, mouth healing, or a combination of both. It just has gotten better. I have not experienced any side effects of overly sweating. I also drink at least 5 bottles of water a day. It is a habit now.

I think pilocarpine is the generic form of salegan.


Tom
SCC T4N1M0 left side tongue & 1 node
Dx 05/21/07 42 yrs old
40 Tx IMRT @ 70 Gy started 06/25/07
Cysplatin & 5fu 1st & 4th wks
treatment ended 08/23/07
TomK #80678 09-18-2008 04:50 PM
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TomK,
It sounds to me like you are doing pretty well. The physical activity, running, is definatly going to benefit you all around.
At night when we sleep salivary flow goes down in everyone. People who have had OC treatment experience the same drop in salivary gland flow but we have to remember that most of these individuals have impaired salivary glands to begin with. That is why dentists suggest fluoride treatments at bedtime and on occasion overnight wear of fluoride trays. The main reason for this is to allow the fluoride to protect the teeth when saliva flow is at its least.
Wearing fluoride trays when you sleep will also mechanically stimulate salivary flow even in impaired saliva glands. When something is in your mouth whether you chew it or not the brain sends signals to the saliva glands to produce more saliva because it wants to aid in digesting it. People who wear bite guards, snoring appliances, orthodontic appliances and fluoride trays to bed will tell you they tend to drool when they sleep.
I'm not sure what the solution is for you but you may want to try fluoride trays, or having a bottle of water at your bedside.
I hope this is somewhat useful to you.
Cheers,
Mike


Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
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ray my hubby has been on pilocarpine for about 5 year snow has had luck with it good luck to you

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I tried it for only a few days. It worked but it made me sweat terribly at night which I couldnt stand. Ya know, girls dont sweat either. Ive been one of the more fortunate ones here with saliva. Since my cancer was located in 2 spots on my left, my right side was pretty much spared as much as possible. I do not need to carry a water bottle around. I do have sufficent saliva, my mouth only gets dry when Im doing a bunch of yard work. Thats the only time I ever notice a difference in my saliva from pre-OC days.

From what others have posted about the meds, it does seem to benefit alot of people.

You do need to have a staff just to keep all the doctors appointments straight. I used to schedule soemtimes 4 appointments per day and then wondered why I was tired. Which doc which day and where, and oh yeah why do I need to see this one? Then there is taking meds, hydration, feedings, skin care, sleeping, avoiding the sun, pharmacy. Its like a never ending regime of care. It will slow down very soon, you only have a few more rad to go.





Christine
SCC 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 smile
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My RO and MO were real big on Salagen (Pilocarpine) so I dutifully tried to take them the 4 times a day prescribed. However, it really triggered nausea and vomiting so I went down to 3 then 2 a day during treatment. I was able to quit the anti-nausea pills then. Once TX was done, I went back up to 3 and finally hit 4 until about 5 months out when they said no real benefit to continue. In my case, it did seem to work, as at one year out, my dry mouth gets better every day and the prothodontist even had to use the suction during my most recent crown preparation - when in the past I had been bone dry.
Still use biotene spray and mouthwash during the day.


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

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