Starting with my original condition, squamous carcinoma in my throat found in Dec. '08. 3 (two day) cisplaten treatments every 3 wks. 35 radiation treatments during and after chemo treatments. A peg tube was also inserted. All subsequent testing has shown positive results from treatments. I experienced mild nausea, some hair loss (mostly recovered)during and right after treatments and loss of appetite.

Several months after treatments ended my teeth began to rot and fall out, my hearing has been (permanately) impaired (now need haering aids)and my main issue is I am not producing saliva.With about a 40lb weight loss (206 down to 165).

As a result from lack of saliva it is difficult, almost imossible to swallow. I have tried with no success over the counter remedies (Biotene etc. Have just started taking "Pilocarpine" as prescribed by my new radiologist, who also had me have a Barium swallow test regarding my asperating. I am now in the process of getting an appointment with another Dr. to teach me how to swallow.

I am hoping against hope that maybe learning how to swallow in conjunction with the new Pilocarpine medication i mat regain some salive producing effects.

I would appreciate any advise/ suggestions from those having simular issues.

Welcome Barry:

I'm sure that other forum members will see your post and be able to help more than I. I have just the opposite, constant thick, putrid mucus in my throat/mouth that makes me sick to my stomach. Others, though, have had no saliva and had to deal with how to eat. In the search area (above, right) type in "swallowing problems" and a bunch of suggestions will show. I'm sure some of them will help you. Sure hope so.
julieann

Barry,

Each of us can respond differently to the same treatment especially when you consider the variables that can come into play, i.e., field of radiation, duration and intensity of the radiation to one particular area, type of delivery system, RO setup experience, etc. Most that receive the radiation do suffer a decline in saliva and corresponding taste but many do recover a great deal.

Our recovery from the concurrent chemo/radiation can take all of 2 years and I remember my biggest saliva/taste improvement came in month 15 post Tx so don't give up yet. I'm would guess that I have recovered say 90% of my taste and saliva but that is a very subjective conclusion as we quickly forget what the 100% level was to begin with.

I also suffered permanent hearing loss from the Cisplatin but so far I can function without hearing aids.

I also must take Synthroid for my damaged thyroid.

All in all I'm completely satisfied considering the alternative.

Welcome to OCF, Barry. Im sorry you are still experiencing some after effects. I also had teeth issues, mine were so loose I was scared they would fall out. I ended up having HBO and having them all pulled in hopes of getting dentures. Due to a recurrance, dentures havent happened yet. I did take the medicine you mentioned and it made me sweat like crazy. I couldnt stand it so only took it for a short time. My salivia is pretty much back to my normal amount.

Best of luck with the swallow test and relearning how to swallow. Hope everything works out for you.

I took Salagen (Pilocarpine) during radiation and for a few years afterwards. I took 5mg 3x's a day and had only mild perspiration for about 5 minutes approimately 30 minutes after I took it. I have a fair amount of saliva and can eat most things. If it gets extremely humid or you find you are sweating profusely, you may want to cut the doage back. Give it a try and I hope it helps you.

Take care,
Eileen

Every time I go for a cleaning the Dentist finds something new...as for the eating...someone here suggested adding a little soluble fibre to my beverage at meal time...made swallowing a lot easier. I also have a little choclate milk with a meal too...it is also thicker and easier to get down.
My saliva is back about 20% or so, and I live with a water bottle in my hand so as to avoid dry mouth.
Keep plugging away, it seems to get a little better with time

I too have dry mouth. I drink water constantly. My periodontist suggestes a spray called Oasis and it works wonders. A lot better than the biotene spray. I do get horrible dry mouth at night and sometimes wake up with a very sore throat and gagging due to the dry mouth.

Angelia and others,

Hang in there. It was 4 months for me B4 I noticed any improvement in my dry mouth and it was 15 months post Tx B4 I noticed my last improvement in my dry mouth. Each time my saliva improved so did my taste and I GUESSTIMATE I am back to appx 90% pre TX.

As an aid for nighttime dry mouth, in a recent online seminar Dr. Lydiatt (ENT, prof, vice chair H&N, U of Nebraska Med Ctr) suggested taking a little OLIVE OIL at night.

Fortunately I don't have much, if any, dry month so I can't say if this works, but it is a remedy I had never heard before and it would be interesting to know if it helps.

According to my dentist, who has several Oral Cancer patients, a small amount of Olive Oil for dry mouth has helped some of his patients also.

He said that some patients have been really pleased and have had really good results.

Thank you "ALL" for the responces. Sorry for the delay in re-posting. Now in third week on "salagen" with no noticable improvment in saliva production. Mild sweating is now a daily occourence. I had a "MBS" test today resulting in DR reccomending swallow theraphy, which I will follow through with. It is now very apparent that patience is needed in recovery from these issues.
Wishing "all" a speedy recovery.
Again, many thanks to all.
Barry

Yep Barry, everything takes time and can't be hurried.