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#57975 03-16-2006 02:18 AM
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Carol L Offline OP
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Hi All, I tried salagen for dry mouth and it made my stomach extremely upset. Has anyone had luck with any other product? I use biotene toothpaste, mouthwash and the gel, but am still very dry....Thanks so much, Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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Hello Carol,

There are two new products available. Numoisyn Liquid and Numoisyn Lozenges. I have used both and they work quite well. No side effects and you can use as needed. The liquid allowed me to sleep for several hours instead of 45 minutes. The lozenges can be carried around. Your Doc's and pharms may not of heard of them yet, but they are available by prescription. They only hit the market in February.

Steve Daib


SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
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It's all nasty! This is the voice of experience! I get a product from VA that is simply called "Saliva Substitute" it is manufactured by Roxane Laboratories, Inc. Columbus, Oh.
It is (Slime)(Nasty), BUT, if you mix it 50/50 with bioteen mouthwash (non-alcoholic), it is tolerable.
I have tried them all, from Jell's to Mush. They are NASTY...
Darrell


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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Barry uses Evoxac -- a tablet like Salagen but without many of the most annoyinh side-effects of that medication (like sweats and hot flushes), and it seems to help quite a bit. However what he really finds the most useful is chewing XyliMax gum -- a xylitol gum from Finland which is now sold by many dentists as it reduces dental caries (as well as moistens the mouth). The actual chewing motion stimulates the glands to produce saliva --

However he does not have the really serious xerostomia, as he took amifostine and also had a fairly "parotid-sparing" radiation plan. Both the medication and the gum depend on there being some salivary gland function left.

He's going to ask his dental oncologist next week about Numoisyn products, they sound worth a try...

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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Carol L Offline OP
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Thank you Steve and Darrell, I have an appt next week with my oncologist, I will ask about the products you both mentioned. Thanks again, Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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Posts: 261
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Strong coffee with brown sugar and half & half. Probably not the best thing for ya but it keeps my mouth coated. I carry those reach flossers, one in every car, one at my desk, floss 4 to 5 times a day. Dentist not happy with me, but no tooth decay, no gum disease, low plaque build up, all in good shape. Very, very dry about 5 in the morning. A little swish of water & go downstairs & brew more coffee! I carry a case of bottled water in every car, too. Erik


dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
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Carol L Offline OP
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hmmmmmmmmm, I LOVE coffee, still have at least two cups a day. Just came back from the ENT and he has prescribed another med for dry mouth called Evoxac. I am hoping to have better luck with it. And Erik, believe me I am NEVER without my water bottle, if I think I forgot it, I nearly have a panic attack! SMILE, thanks for your reply, Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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Hi Carol,

I too am trying to find other products to help the dry mouth.

Here is something they gave me when I left treatment. AquaDrops (sugar free) Hydrating mints. They were to stong right after treatment but now are ok. My tounge can handle them now.

They work ok. I still want to find something that help get our saliva glads working!

Here is a odd helper for dry mouth... take can of sugar free root beer. Let it go flat and drink sips of it during the day. It seems to help.

Let me know if you find anything else.
DM


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
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Carol L Offline OP
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Hi DM, I just purchased a mouthwash called "Oasis" for dry mouth, hasn't helped so far. The Evoxac med. helps, but I am having hot flashes a lot...and I mean it will be like a wave of heat from head to toe and then I sweat. Weird? I also take synthroid for my thryroid, maybe it is the combination. I will try to find the mints. Thanks so much. Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
Joined: Apr 2006
Posts: 583
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Hi Carol,
Hot FLASHES! All the TIME! I have them every hour I can set my watch by them.

I was on salagen to help saliva, but they made the hot flases worse. So I quiet them to see if the fashes would stop. NO! So then I was given Gabapentin to help with Hot Flashes. Wellllll?
I still have the flases, but they seem a little lighter.???? I am still not convinced the pills are working. I will wait a while. I'm still on the hunt to find something to help. I was told the flashes were brought on by Chemo. ?

I am also still working on dry mouth ideas. I am going to go look for some stuff called "Saliva Substitute".

I think if we can find things to help us feel more comfortable we can get better faster.
I know that the flashes wake me up at night. So I am not getting the rest I truly need.

bye for now. talk to you later
DM smile


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
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