Patty,

My tx ended 11-4-08, and I had a horrible time with thick mucous. I would sit on the couch and spit gobs and gob's of thick white mucous. I went through rolls of paper towels. I religiously took pilocarpine throughout txs and I'm still on the script, I think it helped. In early January I had horrible to no saliva at night. When I woke up in the morning I was so dry my throat would hurt(correct me if I'm wrong, but I think we have some very small saliva glands in our throats). I do know that tea mixed with honey or lemon helped me out a lot.

About 10 days ago I started taking a lot of vitamins and supplements...I don't know but just within the last two or three days my dry mouth at night time has not been that bad...here's my full list:

Meds:

Pilocarpine, saliva production

Vicodin, once in a while for pain, very rarely though

Propecia, my hair became very thin in a short amount of time through bad nutrition, stress and radiation. Hair is getting healthy again and my facial hair is also coming back. They all said that my hair would come back on it's own...I wanted an extra push, it's expensive and not covered by insurance because it's considered cosmetic. I'm still and a liquid diet, VHC and soups.

Fluoride gel, for use with trays

Fluoride toothpaste(scripted), for when I'm not able to use the trays, great for trips(I leave the trays at home)

OTC and Vitamins:

Benefiber, for fiber

Calcium & Magnesium, for bone health

Vitamin E, for cell repair

Omega 3, 6 & 9, anti-oxidants

CoQ10+, cells and oxygen

Zinc, my body needs it--I break out if I don't take it

ProMod liquid protein, for protein

Multi-vitamin

Colace, stool softener

Senna, laxative

Juven, for amino acids

VHC, 5 cans a day

Most of the above was added to my diet just within the last 10 to 14 days and I feel a lot better...I'm sure some of the above is not helping but I have no idea what is and what isn't...so until I'm eating regular meals again, these supplements will be in my diet. My energy level is up, my hair looks better, my skin looks better, saliva seems to be better, taste is getting better and I feel better except for some aches and pains that seems to come and go. Right now my biggest complaint is some pain near my ear and where the tumor was...I'm hoping it's just some more side effects from the radiation...We all have our fears.

Please consult your doctor(s) and nutritionist before taking anything

Like I said, I don't know what's working and what's not...but I have seen big improvements in the last 3 days or so and most of the products I started taking 10 to 14 days ago...So, I'm afraid to stop taking anything...I need a pill box!!...LOL

Thanks for sharing with me Ray.

I started some supplements too as soon as I was finished with chemo and radiation. I am still mostly on a liquid diet also. I just started to experiment again with foods. This week I am playing with pudding.

I feel much better since I started the supplements. Right now I am only taking Shaklee Vita Lea which is a liquid so it is working out well. I am also drinking one or two of their Cinch shakes a day. The program is designed for people who want to loose weight, but the shakes are a complete meal and high protein so I drink them in addition to the Jevity and the Carnation. I want to get some weight back on so that I can remove the PEG, but I have to be able to support my nutrition without it so it is awhile off.

The mucous is AWFUL. I wake up with a dry mouth and a big bunch of it covering my air way. Sometimes I have to get up in the night to get ride of it. Then I have to get rid of it at least 5 times during the day. It seems to be worse in the morning and it takes quite awhile for me to feel human. My radiation just ended Jan 2 so I figure that it will take some time for it to go away, but it can't be too soon for me.

I am researching the CoQ10 and am glad to talk with someone that is taking it. I know that it is hard to say what is helping the most. I am adding one thing at a time so that I can tell if I feel a difference and trying to only add one thing per month. I don't want to become a walking pill factory, but I never want to dance with Mr Cancer again if I can help it.

Thanks Ray.

Gary,
I have be told at the CCC that they expect my salivary output to continue to improve and be back to 90% or so by the end of the first year.

I am starting to have some nights when I don't have dry mouth(couple nights a week) and on dry mouth nights the saliva flow usually will start up right after I wake up, so I seldom drink water anymore at night.

My question is, do you think I will need to keep using the fluoride trays every night if my salivary output does get back to near normal and I stop having dry mouth at night?

Thanks

Don,

First off don't be disappointed if their one year est is off. I think you should plan on a full 2 years to recover about as much as you will.

I have been using, at my dentist's recommendation, my fluoride trays every night since a month PRE TX and I think my saliva is almost back to pre Tx normal, maybe 90 - 95%. I am resigned to use them for the rest of my life if he says so.

Don,

I was told that I will have to use scripted fluoride for the rest of my life. Radiation apparently damages the natural enamel on our teeth. I use the trays every night and if for some reason I don't use the trays I use a scripted fluoride toothpaste as directed. The fluoride gel and the toothpaste look almost identical except the paste suds up a little. I believe scripted fluoride products are detrimental for the health of our teeth for the rest of our lives. It's part of the game.

I have also been told that the fluoride trays are a permanent part of my routine now. Between the two radiation treatments and the previous hyper thyroid issues/treatments my teeth are not doing so well even with the trays every night.

Patty