Charm,

Amalgam may be safe for some. But, I have an allergy to both Mercury and Nickel. .(Nickel is in the crowns). This is a documented diagnosis. They are not safe for me. I even had to stop wearing my gold wedding band years ago, because I broke out in little blisters where it came in contact with the gold. No, I'm not allergic to the gold, but the gold is not pure, and is part nickel. This was dx by an MD. Likewise, I could not wear contacts because of the thimerosal in the solutions. I had no idea at the time that thimerosal contained Mercury! Just like I had no idea amalgam was 50% Mercury. My body cannot stand contact with Mercury.

I guess my question is, why take the chance in using mercury when there are other good products available?

And... my anger is with articles like you just linked to that perpetuate its use. Mercury is POISON. Where is our common sense?

I know you are going to think I'm nuts BUT my first visit to Moffitt Cancer Center in Tampa I was told you have Squamous Cell Cancer we can remove it surgically. I looked at my Dr. first words out of my mouth my cell phone caused this to happen. He smirked and didn't say anything he probably thought she's nuts. That was April of 2009 way before anything came out about cell phones and radiation warning they want to put on the phones. Yes, I was a smoker and an occasional drink.

The reason I feel it was my cell phone. I talk on it daily to my clients, family, friends etc etc..., no land-line. For the last couple of years I would have a red mark on the side of my face after using my cell phone, left side just above my jaw bone. I went to the dermatologist he gave me cream to use he didn't know what it was, I never thought about it being my cell phone. January of this year a sore developed on the side of my tongue the same place the rash (rash would come and go) was on the side of my face. I went to the dentist he dismissed it twice gave me a mouth wash ha!!!
Long story cut it short my Dentisit of 11 years and twice a year visits didn't give a damn. There is nothing I can do about him not giving a damn either. Every day I think I'd like to smack him right upside the head. Biopsy right away don't dismiss it. If he did his job in January just maybe I wouldn't have gone through the misery.

Back to the cell phone. I've had a cell phone for 10 plus years. I have a rash (comes and goes) on the side of my cheek and a sore on the side of my tongue same side. When I used my cell phone I could feel a vibration in my cheek, red itchy rash on the side of my face. When I put my finger on my cheek where the rash was it is exactly where the sore was on my tongue.

I'm going with my cell phone nothing will change my mind I guess I'm hard headed. I talked to Jerry when I posted long ago I told him I think my cell phone caused the cancer.

When I use my cell phone now I can feel a vibration in my hand I also use speaker phone. Whenever I can I set the phone down and talk, very paranoid. I feel in the coming years you're going to see a lot about cell phones and cancer.

Now hearing cell phones MIGHT cause brain tumors when I get headaches the first thing I think brain tumor. I know it sounds crazy, but I'm not a crazy lady I think I'm realistic.

Look at all the kids using cell phones all the time not healthy.

This is my story and I'm sticking to it.

Linda, you have given me food for thought. However, isn't the mercury in amalgam meant to combine with the other minerals and thus become inactive?????

I know that a small number of patients recover from lichen planus after having their amalgam fillings removed. (I didn't but it stands to reason that some patients with chronic ulcerated lichen planus like me who showed an allergy to amalgam might possibly have had the cells in their tongue irritated to such a degree that they became abnormal????)

I have a crown near the cancer site too. It's the only metal I can see now on that side of the mouth. I think I showed a mild reaction to nickel. My patch test was ages ago now.

Next time I have a check up I'll ask my doctor what he thinks of my lichen planus background - he's a surgeon so won't be all that interested but I'll see if he can point me to material that can help me find out.

[quote=Alpaca]Linda, you have given me food for thought. However, isn't the mercury in amalgam meant to combine with the other minerals and thus become inactive?????

That's what "they" want you to believe... But if you go back to the link somewhere above us (the article that says amalgam's safe) you'll read that even they admit to a small ammount of leaching.

I see that your flap was taken from your wrist too. Has your wrist recovered fully yet? Mine is still too weak to play the autoharp, which I enjoy. I'm just wondering how long it will be - if ever. I don't have enough strength to hold the chord bars down.

Next time I have a check up I'll ask my doctor what he thinks of my lichen planus background - he's a surgeon so won't be all that interested but I'll see if he can point me to material that can help me find out. [/quote]

I followed an Oral Lichen Planus group/list for several years from Baylor University. http://www.tambcd.edu/outreach/lichen/
You will likely get more info there, in my opinion. In my case, I think the OLP was a mis-diagnosis.

Linda, I never asked you, but has anyone ever mentioned laser treatment of the lichen planus (leukoplakia?) that you have? That sure seemed to clean up Dick's mouth fairly well. I know you wouldn't want it done for a long time, until you are fully healed from your rads/chemo treatment, but something to think about in the future.

Connie.
If you are so certain it was the cell phone that gave you cancer, why are you still using it? That's like us smokers continuing to smoke after diagnosis. Think about it.

Take care,
Eileen

I've been watching this thread for awhile and as everyone always wants to understand how they end up where they end up the question seems normal to me. However the unsubstantiated speculation in this thread has gotten pretty far away from topics that have any scientific background and wandered off into the realm of urban myth.

Everyone is welcome to believe whatever they wish, but we try to keep these boards focused on what we know to be based in facts and evidence based science when it comes to the disease itself. So that new people coming here do not get unsubstantiated misinformation, I would appreciate it if everyone would keep the speculations to PM's and emails. The information on this board is based on personal experiences and how that helps others understand and cope with the issues related to this disease, and what we know to be medically accurate facts.

No one has proven a link to cell phones, amalgams, and so much more that is being tossed out there. OCF's forums get high marks from major treatment centers that refer patients here for help. The reason for that is that they are moderated and watched by professionals in the background, and that we do not let it become the wild west of ideas like the web can be sometimes, and other message boards that are not moderated degenerate into.

I hope that Marcus or another science based person chimes in on genetic predisposition's, and what has been published on most of these ideas. Bottom line while it is not as satisfying as saying this silver filling did this to me, the reality is there are no absolute answers that apply to everyone when we get away from known risk factors, and most that do not have one will never know why something happened to them, and not the guy standing next to them.

Brian,

Well, I'll go back in my (snow) cave here in PA.

However, you need to appreciate my impression that you are *sounding* a lot like my *former* dentist. I used to work with a psychologist who always said (I don't know where it came from) "Oh for the gift of the gazer, to see ourself as others see us."

I can, however appreciate your concern for your list's integrity. You've put a lot of work into this list, and it's invaluable to a lot of us.

Now, I also understand "hypothesis" and have had some graduate level classes in statistics. My frustration is with people who shut doors, rather than figuring out how to explore the possiblities. I can't see how difficult it would be to do a stasitical analysis, at least, of other factors, especially if you're a doctor who sees new head and neck cancers every day. How did it happen that HPV was identified as a risk factor?

Pathologists, starting almost 30 years ago, who were doing DNA studies on oral cancer tissues accidently found the viral DNA strands inside oral cancer cells. It was reported in the literature for almost three decades in peer reviewed journals sporadically. It wasn't until about 2000 when an unknown researcher picked up the torch with some proof of principal money from a very small and underfunded foundation, and did a very small study which identified it as a distinct sub etiology. Even then with published data in the Journal of Oncology it took many people in the oncology world talking about this no longer speculative evidence, to get the word out that this was no longer speculation but fact, and for real serious funding to come from the NCI to elucidate more.

Many doctors outside of oncology still a decade later do not realize that it is a cause. But there was a scientific process from discovery of a tangible bit of evidence, to mature that into larger and larger studies to prove that this was not an isolated situation.

FYI peer reviewed studies have been done on amalgams going back two decades and longer. Perhaps you should read them and then decide if your hypothesis is still sound. What you will find is that there are people (with genetic predispositions) that are allergic to components of amalgam. The dental amalgams used in the last 50 years are mercury, silver, tin, copper, and zinc. No nickel. In my own opinion, I wouldn't use something in my mouth that had mercury in it as there is a potential for leaching in minute amounts over years. And I recommend to my friends that they get composite fillings which these days are better in many ways, including strength and esthetics to the old school amalgam idea. I would guess that in dental practices it is used less and less and these new composite filling materials are easier to use and better, with no associated hazards (even to the doctors and assistants that work with mercury vapors in their offices every day). But you have to remember that amalgam has been around for hundreds of years in various incarnations, and at the time I was young, it was all there was. However, the issue is always going to come down to volume and duration of exposure (of mercury in particular) which in most people is low to the extreme. What might interest you, is that there is some evidence of mercury causing lichenoid lesions. The evidence for lesions like lichen planus which occurs orally being tied to oral cancer is not strong, and most oncology professionals (while you can never rule anything out completely in the reasons why some cells develop damaged DNA) would say there is no connection. As amalgams are used less in the world, this is a situation that if they are, even in a minor way associated with some kind of cellular transformation, that the marketplace is going to deal with it by their being replaced by superior and cheaper alternatives like composites. But both speculation and real research is out there for anyone that wishes to take the time to do the work to figure it out, ending up with educated and informed opinion at the end. Will that opinion alter the world.... perhaps if that person's passion is great enough, and the evidence of substance. When doing your research remember that in the web world, just because it is on some site, does not make it a fact, and there is no lack of anti-amalgam sites on the web.

So here is my dilemma. If I want the big cancer treating institutions to continue to refer patients to this message board for help from others that are generous enough to donate their time and personal knowledge to help people behind them on the path, the board has to conform to a guideline that sees that erroneous information, speculation, and such isn't part of who we are. For the most part over the years this is done through strong science posters like Markus and Gary jumping into discussions and reasoning things out with people. That failing to happen, I get the usually unpleasant task of moderating the dialog, which always ends up with someone being unhappy that their viewpoint (like the guy that came here and wanted everyone to believe that cigar smoking was an OK thing to do) cannot be expressed on the boards. I don't enjoy the process, I don't like to be the guy in the black hat, and at the end of the day, the buck stops with the board moderators. It isn't a democracy.

There are lots of boards on the web for any idea that you can think of. People singing the praises of spit tobacco, railing against vaccination, even are sure that the world will end in 2012. Each has it's proponents and detractors. Here we have one purpose, and that is to help people going through issues related to their diagnosis, treatments and emotional issues associated with oral cancer. We are not going to solve more esoteric issues with our peculations, and for the most part they do not help those newly diagnosed patients that need your help in more practical "dealing with it now" immediate problems. For those that wish to convince someone that their idea is worthy of exploration, OCF is not the forum. They can write lots of institutions that are funding research, they can communicate with researchers that may share their hypothesis, all thing which might actually, if there is any merit to the idea, move something forward. Doing it here on the forum does not move your idea forward.

So would you have me lose the ability to work with the institutions that refer to us because they trust us to hold certain standards, or should we just let the board run off into speculation of things we cannot know and depart from the reason the boards exist.......

Linda Rose: Thank you so much for alluding to the fact that I am someone that shuts doors. I have given a decade of my life and the personal money to start this foundation. I don't expect any accolades for that, but what I also believe is this shows me to be someone that wishes to open doors, and spread knowledge. And clearly you have made it unnecessary for me to see myself as others see me (the quote you like so well) as you have made your view of me clear.

Brian,
Thank you for the well-written history of the HPV sub-etiology. I do appreciate that. So sad that it took so long to be accepted in mainstream medicine.

I have pretty broad shoulders too, and might say that the "shutting of doors" is my subjective experience - the same one I felt when my (well-known) researcher surgeon told me that he couldn't do a study because he was "an immunologist." Sorry if I offended. I meant no offense. And, as I mentioned previously, I do appreciate the work you've done. This was my first stop after my diagnosis, and I've learned more here than anywhere.

And also, the "see yourself" quote applies equally to all of us. I've never "seen" myself in the ranks of urban legend spreaders.

It is frustrating, however, to run into resistance. I'm afraid that I won't live long enough to see the research that's needed. Although, on a positive note, I understand that very few children are getting the cavities and fillings that my generation got. Maybe it'll be a moot point when my generation is gone.

Now, take the black hat off and sleep soundly tonight.