#60018 01-17-2007 04:11 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) |  "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | David,
I've been taking salagen (now the generic oral pilocarpine) for about 16 years -- ever since the clinical trial stage. It has helped me a great deal with salivary function.
When I had a recent checkup with my RO, he said he had seen studies that showed the following results with salagen: 1/3 positive benefit, 1/3 placebo effect, 1/3 no benefit. I suppose a lot depends on what's left of your salivary glands after the end of treatment. I know some of my salivary glands were removed during surgery, and the remainder were pretty well toasted during radiation (XRT), but I've still gotten back quite a bit with medication.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
| | |
#60019 01-18-2007 07:31 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | David, Sorry I thought it was obvious I was taking salagen for drymouth. As far as I know, that's all it's prescribed for. Right after I take a dose I get a little gush of saliva which lasts maybe half an hour. Then I get very very dry again. I get incredibly dry at night. So yes, it works but not very well.
If evoxac works better (and there's more than anecdotal evidence of that that I can show my doc) I sure would like to know it.
Nelie
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"
| | |
#60020 01-18-2007 11:38 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Nelie,
Do you take Salagen on an empty or full stomach? After some trial and error, I found that I got the "gush" of saliva (and then a rapid decline) if I took it on an empty stomach, whereas the saliva seemed to come and go more gradually if I took the salagen after having some food first.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
| | |
#60021 01-18-2007 05:20 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 | I take it with food. But it's all liquid food. Maybe that's part of the problem but there's not much I can do about that, unfortunately.
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"
| | |
#60055 01-17-2007 05:17 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | For what it's worth, my ENT says there's no evidence evoxac is more effective than salagen. Where it tends to be superior is less side effects. I actually have none of the bad side effects from salagen, even though I'm taking the maximum dose, and he said there would be no point in switching. If he is wrong and anyone knows of research showing evoxac is more effective (not just less side effects), I'd love to know of it since I think i will need to show it him and my prescprtion drug insurance company, to get the change approved.
Nelie
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"
| | |
#60056 01-17-2007 01:27 PM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Nelie,
What are you taking the salagen for? Has it helped your dry mouth? Just curious.
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.
| | |
#60057 01-17-2007 04:11 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | David,
I've been taking salagen (now the generic oral pilocarpine) for about 16 years -- ever since the clinical trial stage. It has helped me a great deal with salivary function.
When I had a recent checkup with my RO, he said he had seen studies that showed the following results with salagen: 1/3 positive benefit, 1/3 placebo effect, 1/3 no benefit. I suppose a lot depends on what's left of your salivary glands after the end of treatment. I know some of my salivary glands were removed during surgery, and the remainder were pretty well toasted during radiation (XRT), but I've still gotten back quite a bit with medication.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
| | |
#60058 01-18-2007 07:31 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | David, Sorry I thought it was obvious I was taking salagen for drymouth. As far as I know, that's all it's prescribed for. Right after I take a dose I get a little gush of saliva which lasts maybe half an hour. Then I get very very dry again. I get incredibly dry at night. So yes, it works but not very well.
If evoxac works better (and there's more than anecdotal evidence of that that I can show my doc) I sure would like to know it.
Nelie
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"
| | |
#60059 01-18-2007 11:38 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Nelie,
Do you take Salagen on an empty or full stomach? After some trial and error, I found that I got the "gush" of saliva (and then a rapid decline) if I took it on an empty stomach, whereas the saliva seemed to come and go more gradually if I took the salagen after having some food first.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
| | |
#60060 01-18-2007 05:20 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 | I take it with food. But it's all liquid food. Maybe that's part of the problem but there's not much I can do about that, unfortunately.
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"
| | |
| Forums23 Topics18,168 Posts196,927 Members13,104 | | Most Online458
Jan 16th, 2020 | | |
|
