Hi,
Here we go with another question!
It's 5 months post treatment for Gordon. Over the last few days, he's experienced a slight bit of bleeding periodically on a spot at the left side of his tongue and on the tip (his BOT was on the left side). It's very minimal and sporadic, however, as usual I'm freaking out. He doesn't seem to have bitten his tongue or done anything different or unusual. I've called his ENT surgeon's office and his secretary said "better to be on the safe side" and has managed to fit him in for a quick check on Monday. Neither of us can take any more worrying or stress, but there it is..
Has anyone experienced anything like this? Many thanks, Anne

Now y'all are scaring me. Either it's such a bad sign that nobody wants to tell me, or nobody's ever had this happen! I'm hoping it's the latter.
Anne

Hi Anne - I'm so sorry you are having to worry about this but until you know for sure what it is, it's better to try to think of some of the less worrisome reasons for what's happening. I know that's easy to say and not so easy to put in practice. I did just now check with my son and he didn't remember having any bleeding while recovering from his treatment but he was very careful when it came to anything inside his mouth. I know from observing his experience and others on this forum that the tongue can be very tender and it's a good idea to make sure to only use a soft toothbrush and a mild tasting toothpaste. Same goes for mouthwash since anything with alcohol in it could irritate the tongue. Spicy foods or drinking alcohol can also be an irritant to the tongue. Since Gordon's recent Pet scan was clear and you say that the bleeding is minimal, maybe it is not anything really serious. It's good that he has an appointment with the ENT on Monday. It's always better to know for sure what it could be. I'll be thinking of you both and hoping for some good news on Monday. Let us know what happens, ok?

Thanks Anne-Marie, I go off the deep end easily these days. Gordon just started to use a new toothpaste called Colgate Prevident 5000, so I wonder if that might be the culprit. It has a high fluoride level and he's also using the dental trays with fluoride every night. He is staying away from anything spicy and doesn't drink alcohol at all, and is careful to use a soft toothbrush and not eat anything hard or crunchy. He's also just using baking soda and water for a rinse. I can believe that the tongue is very tender after this harsh treatment - the dental hygienist at the cancer clinic told him he has some bald patches on his tongue. I guess this means some of the taste buds have been burned away by the radiation. I will keep you posted, and thanks so much for your support. Anne

I use Prevident 5000, but using that PLUS trays seems like serious overkill. I would use the trays alone were I him, with a non irritating toothpaste like Biotene PBF. Trays are better than Prevident, but I've had some crowns made over the last 6 months and they don't fit any longer, so this is a temp situation till I get the last crown done next month, then I will get new trays made.

Well, as it turns out, he *hasn't* been using the Prevident! He was supposed to, but hadn't got around to it yet. He has been using Biotene for quite awhile now, and maybe it would be a good idea to stick with that. The dental hygienist told him not to use the fluoride rinse as well as the trays, so we'll ask about the Prevident too.
I'd still like to know why he has a bit of bleeding, but I guess we'll have to leave that to the ENT on Monday. Thanks for your suggestions, as always. Anne

You can get too much fluoride. It's toxic in high levels over a protracted period of time.

Elaine, please dont take the lack of response as a bad sign. Many times a post on a weekend doesnt get as much attention as one during the week. There was also a big OCF walk over the weekedn that many OCF members attended. Im not familiar with the problem your husband is having so I didnt want to comment. Im sure others who have undergone similiar treatments will give you some advice. One rule of thumb I have learned from OCF is when in doubt go check it out. Seeing the doc never can be a bad thing. Hope it turns out to be no big deal.

Thanks to everyone. I was kind of kidding about the lack of response, but not entirely, so thanks for the reassurance Christine.
As it turns out, the bleeding is nothing but the result of doing something (brushing the tongue, eating french fries or ?) to a very tender tongue. The ENT looked puzzled and asked why we were there, as he'd just seen us on Sept. 8. My response was that we didn't want to show up later, have it turn out to be something bad, and be asked "why didn't you come in???". He thought that was quite funny, and said it's not cancer, nothing to worry about.
Good thing he's got a sense of humour. Anne

So-o-o-o-o glad things turned out so positively, Anne!