there are some beautiful people on this forum but I'm getting a little frrustrated with answers to questions and I see alot of people asking questions and no one answering them. Is everyone on vacation on at the beach? My problem is very small compared to the poor people going through much worse. May God bless all of you, but try to make new friends and answer a question asked by a stranger. I read them and cannot answer them because I haven't been through Chemo and I haven't been through alot of the problems people have.

Tony - Can you tell us more about you and what your frustrations are? Are you still in treatment? What is it that you need answers to? I'm sure there will be someone with a similar experience that can help. There are a lot of compassionate, knowledgeable people here and also a search feature at the top of this page that might anwer a lot of concerns/questions. On the Home Page there is a wealth of information and another search feature, too that can lead to more answers for you as well as help develop the questions you might ask here or with your doctor. Let us know what's happening.

Tony - people here try to answer everyone that posts, but some do slip through the cracks.

It can also sometimes be that like you have said, the poster has asked a question that only a few people have experience with, and so they may read a post but have nothing productive to reply with from their own experiences. So they do not reply. You can understand this from your own postings I'm sure, since we only have a couple posters that like you have had a total larygnectomy... That makes most of us inexperienced when it comes to talking about that subject. The posters here do the best they can, and that they even come back after treatments to try and help others at all, makes them great people in my book.

I also would like to add that in this particular topic there were 3 threads about ORN. 2 had no response but the third one had 12 responses which thoroughly covered the subject. Having been on the boards now for almost 5 years, it can be draining to constantly keep repeating the same information. That is why we posted the "how to" section. Many early visitors here are also unaware of the wealth of information on the main site. We really do attempt not to "ignore" any new posters however.

And, as Brian said, in some rare cases, people have a problem that very few here are familiar with. This forum is about sharing of personal experience, strength and hope.

Hi Tony,

I'm not at the beach...although I sure wish I was. :-)

I read all the posts here, it is helping me get through each day of my husband's treatments. However, I often don't feel qualified to enter a thought. And, to be honest, some days I'm too tired to have a thought. But, reading what people write...old and new threads...is a big part of what gets me through each day. I am so grateful that Brian had the amazing insight to create this incredible coping tool.

Oral cancer is so broad, and I know everyone is dealing with different issues. So, while I don't feel I can contribute to everyone's threads, I do include everyone on this forum in my prayers.

It sounds like you have been through a rough time. Now that you have had a total larygnectomy, what is the next step for you?

Dear Tony, when I was a youngster, my Dad used to caution me about "foot and mouth disease". [I was pretty loquacious and always had a point of view]. One of the things I have learned from OCF is how much I don't know about cancer! I can talk about my husband's cancer-floor of mouth, tongue involvment,spreading to lymph nodes- and his experience with 3 surgeries, radiation, chemo, Erbitux, and I can talk about my experience as a caregiver during the journey.I read all the posts on the forum and feel really badly when I don't have the knowledge to respond. I think everyone here is trying to be supportive within their area of experience. Amy in the Ozarks

We have a new member in this forum screen name dancingwithroses aka Alan.He is my UK cancer buddy and is a 9 year survivior post total laryngectomy.I know he would be more than happy to help any one here who needs advice regarding laryngectomy and life afterwards,so PM him or get his e-mail address from his profile.He will respond i am sure and his experience makes him uniquely qualified to answer all your questions.

Hello everyone, I didn't mean to upset anyone, and I'm sorry if I did. I was just frustrated! I have lost my voice and my electro larynx gets a little hard to use sometimes. Thank you all for your replies. I realized that everyone here is doing the best that you can to help people. If it takes a while to get help, that's fine too. All things will be revealed in thier good time. Well, I just got back from my oncologist. He said my PET scan was fine. No spots, but he says if I were his brother or father or himself, he would get the radiation. That hit me hard, he really believes. He also said that he would be radiating my neck not so much my jaw. I asked him about the radiating twice and he said it's rare but it does happen. He also said ORN was very unlikely. He came highly recommended. So, I am relieved about the PET but still a little freaked out about the radiation. I know you get sick of repling to the same old questions, but any advise would be nice. He offered to arrange a second oppinion. He said I might need Chemo if I get a surgical oncologist he might recommend it. I have a good friend that just believes in nutritional cures. It is alot to sort through. Thanks again, Tony

Tony,
nobodies upset and it was a valid question and deserved an explanation.

By the way I want to thank Brian Hill. This is an incredible web site you have developed. It has been very helpful. Thanks again,Tony