Because I saw some in a store today, I thought I would pass along that using a baby's toothbrush, which is much, much softer, worked well when my mouth was a mess from rad and chemo.

Hi Joanna,

That's a great idea. Also want to mention that I was given disposable, spongy tooth cleaners, which I think were called "toothettes", at the hospital. They also worked great.

Jerry

Pre treatment my dentist made plastic forms of my upper and lower teeth similar to what you see football players wearing. Each day I put a strip of a flouride paste in the molds and put them on my teeth for 30 mins. I am 6 weeks post Tx and I still am doing that. I will continue until he tells me to stop. He says this is the best thing I can do for my teeth. Anyone else doing this?

David, I use the flouride trays also. We're more susceptible to tooth decay as a result of the lowered saliva production. It's also really important to brush several times a day and don't let sugary residue sit on your teeth.

Also, chew Xylitol gum after eating -- the dental brand is XyliMax and it comes in a mild fruit flavor which doesn't burn the mouth the way mint flavors can. The gum does three things:

1) Reduces residual sugars in the mouth and thus the risk of tooth decay
2) Chewing action stimulates salivary production (such as it is) and increases mouth moisture
3) Chewing action improves tone of jaw muscles which can be afected by radiation

Our dental oncologist, who is considered an expert on effects of radiation on the mouth and teeth, heartily endorses this gum and says that it can be chewed "as much as you want". He also recommends use of Biotene products (as opposed to compettors) as they replace some of the important enzymes etc. in saliva.

Gail

Gail Mac, where do you find this gum?

I guess we should take down all the posts that are more than a year old. I thought that we would leave them up so that people could learn from the thousands of discussions that have previously taken place on these boards. But in the last 30 days the message board search engine has been used only 12 times. The admin function that a few of us have allows you to see what topics are hot, who is visiting, posting, even the invisibles, and much more. The search engine is there for a reason. Long time posters, who have a great deal of knowledge, (and you can see this from the number of posts they make), give generously of their time in the evenings to answer as many questions as possible. But I guarantee you that after several years of answering the same PEG question or whatever, even those with the kind of dedication as Gary shows, tire of repeating themselves. Some of our best clinical and hard information posters over the years have moved on, KCDC, Mark, and many others who were regular posters here. OCF is greatly in debt to those who come to share their information. But before we send them all into burnout, take a minute or two and read some of the findings in the search engine here or the search engine on the main site (they do not over lap their coverage). Your answer may be only a mouse click away. If you can

Here I go, jumping in the deep end again, but I had some strong reactions to your post, Brian, and I guess I am going to voice them. There have been 3 different kinds of gratification for me since becoming a member of OCF. 1st, I found one place that offered me more than I could absorb about what was happening to John. 2nd,On this site, John and I gathered real information from real people on how to deal with what was happening in our lives, and 3rd, I have been fortunate to connect personally to some incrediblely strong individuals.
As to searching for answers and getting the clinical and "hard information", I believe that people are in a panic to find immediate support after being diagnosed with SCC. Usually, they are not given much time to deal with the overload of "stuff" being thrown at them. The natural impulse when someone finds a place like OCF is to immediately try to connect with others who might offer some help or solace- not start a long term research project before deciding on which Doc's recommendation to accept or how to deal with radiation or chemo side effects. I know I am not expressing this well because I am in awe of the knowlede you, Gary, Mark, Gail and others have to share- but quite honestly, much of it is over my head and beyond what I can absorb. To be honest, I am interested in what might keep my husband alive and what might alleviate his pain and how I can be a better caregiver. When those questions are handled, I hope to be able to help others, as you do, but my help can only be from my experience as a caregiver. I am confused as to the meaning of your post. Since there are choices of topics to post to - which seem to encourage people to express what is happening in their "here and now", are you suggesting that these topics are too loose in nature because the answers could have been researched with the search engine, thus bypassing the Patient Forum? Are you suggesting that we should just post to "Friends" instead of addressing an issue to "Currently in Tx" or "After Tx.Issues" ? My final thought [probably not, but for tonite] is that most of us DON'T KNOW what we need to search for until the minute it is upon us with this damned disease. That is the most valuable part of OCF to me- SOMEONE is always here to help me. I promise I will try to use the search engines more, but the immediate contact-cyber or not- has been a way for me to stay connected with a world that can speak the same language I have been learning the past 2 years and OCF has saved my sanity. Amy

You and I have been here before. I am not about to get into it with you again, since we did this by email just recently, and the last time we went round and round on the forum it wasn

Ok you guys time, for a "time out"! What Brian says is indeed a fact. We have had many long time posters burn out from answering the same questions over and over again. Amy has a point too - that oftentimes people are scared sh*tless and need personal attention and sometimes redundant posting is called for. Both points of view have validity.

There has to be a balance between the two though however and some degree of discernment over what is a "burning bush" issue and something that is easily answered by a little searching in the archives. As Brian alluded to, some of the original threads may contain a very detailed set of suggestions and the current response may be the "Readers Digest" version. That's why more often, I too have been directing people to the search engine. The archives are part of the patient forum just as much as the active pages. There are only a handful of us that answer most of the posts here and it can be overwhelming at times. There is some really good stuff in the archives. There is a beautiful legacy that others who have gone before have left in the archives. It would be a terrible injustice to those who have given not only their sage advice but in some cases their very lives in the service of others.

There is also a lot of basic information on the home page as well (which many overlook). Thousands of manhours have gone into the main pages and they are constantly being updated and being made more user friendly.

On the darker side, there are some who abuse the intention of the forum as well - starting mutiple threads for the same individual, when one coordinated thread would be more sensible (and actually more beneficial) and of course we get our fair share of hypochondriacs and other wierdness. All of this just stretches the limited resources very thin.

Being a frequent poster here I can tell you that it can have it's emotional impact and problems for us as well. Many times my doctors have warned me to get off of the boards because it was impacting my own mental health. I do take some time outs myself at times. When people like Danny Boy, Dinah, Heather and many others lose the battle, it can be devastating for us as well since they (and you) are all part of our extended family.

At this very moment I am in an anger management class at my church. Anger is a healthy emotion - what is unhealthy is how we channel it. It can be used for positive or negative energy and the choice is the challenge, or what we do with it. One always has to ask - is this venting going to help the larger good, especially in someone else's thread. Or if one simply needs to vent then then are appropriate topics for that purpose, like the blogs for instance. After all this thread started out about toothbrushes!!?!?!

Having numerous personal correspondence with both of you I know that we are all on the same page about wanting to help and take some of the fear out of an unthinkable and terrible disease. There are times that we must just simply go out and throw bricks at the wall rather then vent on each other.

I personally prefer taking my M1 Garand to the rifle range...

Peace