Hi everyone,

I've recently begun having difficulties (or atleast noticing them) with a build-up of saliva in my mouth. It makes sense since the tumor is located on the bottom of my tounge. What doesn't seem to make sense is that it isn't that consistent. Has anyone had a similiar experience?

I also have noticed an odd taste developing at various times during the day. Again, is this something anyone has had any experience with?

Up until now they only symptoms I have had is the actual tumor itself. I guess I should expect other things to begin to happen, or for me to start noticing them. Any information you can give me would be appreciated.

Peace,

Fr. Mike

If by saliva build up, you mean all of a sudden you drool - almost? Hard to explain it, but it happens to me. I also get a metallic taste in my mouth sometimes.

I did radiation and chemo (cisplatin,5FU) two years ago for SCC Base of Tongue.

First I noticed the odd taste, particularly after waking up. Then I noticed a 'buildup of salivia'. I would make the radiation tech wait so I could do a final rinse/spit job with it before lying down for the radiation treatment. Then I noticed that it was yellow. The nurse told me that it was commonly referred to 'secretions'. They were the by product of my salivia glands starting to show their troubles. The secretions continued to get worse and worse until finally I was using a suction machine (obtained via hospital) to deal with them. They didn't decrease until around 6 months had passed. It seemed to me that I had them worse than 'normal' people, based on the responses I'd get from different members of the medical team when I'd complain about them. On the good side, I never did get the terrible sore throat everyone complains about, and I always wondered if the secretions were the cause of the that blessing.

Debbie in Iowa

I had a tumor in my tonsil removed in November of 02. I then did radation treatments starting in January for 6 weeks. I was bouncing back well 3 weeks after surgery, however, after only one day of radiation, I was already beginning to experience severe effects, in fact the radiology team thru my treatment said it was as if I was also having chemo, but I wasn't. The huge problems after surgery and thru treatment was mega phlegm, which some call effects of salivary glands. It was a constant battle for me gagging and relieving enormous, not little, amounts of heavy heavy mucous. That for me was thee monster of my recovery. I have minute phlem activity now, however, no saliva at all. Radiation destroyed those glands and I am takimg the drug salagen hoping to restore some of it, I am hoping for a miracle as it is hell without saliva. I am out of radiation for 5 months now, but still experience enormous fatigue. Anyone ou there relate/ I am off the feed tube and eating, however my throat is still very sore. I am much better than I was, but still feel a long way from "normal" Who know is at will EVER be again. Does it ge better? I get tingling in my hands and sometimes in my neck. Somne say this is a d=side efffect of radiation. Does anyone know about this? One more thing the doctors failed to inform me of....this has been ,for me, a learn as I go along experience. I tried to work again full time, but I got too zapped, hit a wall and set me back. I was getting bouts of energy before, now I am very fatigued again. Can anyone out there talk to me and shed some light as I have been dealing with this all the past 10 months and never even knew there was a website until now. Please advise, anyone!!!!!

Bookaren,

Yes, it will get better. A rule of thumb we have used around this board is "1 month of recovery for every week of radiation." Although everyone is different. I, too had false energy once or twice but not for long and it took a while for me to build up little by little. It will come. Being able to get proper nutrition will help.

There are a few of us that have had the tingles down the neck/back/ hands. There is a name for it that escapes me. It will go away in time. I'm not sure how long mine took, but it just vanished.

Glad you found this board, please do a search of previous messages to help answer some of your questions. And the search on the main site is very useful. I also found this place after treatment and wished I had found it sooner. It's much more informative than my doctors were.

Take care,
Dinah

BooKaren,

It took about three years for me to feel the same energy levels that I had before radiation treatment. However,I had a series of 5 surgeries over a 4 year period, so it may have taken longer for me. I swear sometimes I get more tired when I'm out in the sun for extended periods, but it could just be my imagination. I have found that increasing my physical activity had helped "kick start" my energy levels to where they were pre-cancer. While I don't think I will ever be the same, at least I can go for a long walk without wanting to stop and rest.