Hi,

My name is Rob. I am a 41yo wm with SCC of the right tonsil with met to one node in my neck. I look forward to talking and learning from all of you. I am so glad that a group like this is avalible. It really helps.

Here is my story:

On 9/2/03 (My ten year wedding anniversary) I was diagnosed with SCC right tonsil primary 1.6cm, 1 lymph node met 3.0cm. Tonsil and lymph node removed surgically that day. Thats how I was diagnosed.

Here is what I went through:

Induction Chemo
8 weeks (once a week on Thursdays) utilizing Taxol (Every Thursday) and Cisplatin (first week and last week only) starting 10/10/03.

Chemo/Radiation starting 12/14/03
8 weeks (4 on 4 off)with 5FU (24 hour a day IV drip Sun-Fri, on weeks only), Hydroxyurea (1 pill a day, on weeks only), Iressa (1 pill every day for the next 2 years), IMRT (twice daily Mon-Fri for 4 on weeks).

The hair on my head did not fall off (even though I shaved my head anticipating it's demise). Radiation burns on my neck and one sore on my tounge was as bad as it got. I finished my treatment 2/13/04 and feel GREAT! I am back at work full time and trying to adjust to the dry mouth and taste changes but thats nothing I am alive thats what matters.

I was treated at University Of Chicago by the finest doctors and medical staff in the world, really. As the father of 4 and number 5 on the way (5/23), I felt I owned it to myself and my family to research and receive the best available treatment.
I looked at all the leading medical facilities for HNC. I was as surprised as anyone to find that one of the leaders in HNC was right hear in Chicago. I was willing to travel to Madrid if necessary. Anyway, I had an easy go of it but understand I am in the minority. I would like to extend my help in any way I can to this org.
If I can add one thing it is this.

Most of the information on the web is too old to be pertinent due to changes in therapy protocols.
The best advice I can give a newly diagnosed patient is stay off the internet unless you are willing to weed throught the reams of old outdated survial numbers, treatment options, and statistics. Try to look at studies, papers, etc that have been completed within the last 2 years or so. We are just starting to see better stats due to these new treatment protocols.

Also, one needs to remember that there is a mean and a median to all statistical analysis. The stats that are published are based on all people in a particular study, protocol etc. That means people that are advanced in age 75+, people that continue to smoke, drink, people that get hit by a bus or have a heart attack etc. You have to be the 100%. Your prognosis if different than anyone in any study. The fact is we are seeing better results medically than we ever have in the past. I would love to see more long term survivors out here but most peolple are in there 60's when they contract HNC. The probibility of them living another ten years is rather low to begin with.

I look forward to helping in any way I can.

Thanks,

Robert Hamilton

Hi, Bob, welcome aboard, you sound alot like most of us.....we wan to help each other, so it sounds as though you`ll fit right in with the gang......Hugs, Dee

Hi Robert,

Welcome to the club!!!! You seem to have alot of knowledge about Head & Neck cancer. Knowledge empowers us. I never heard of this cancer before I got it. I think the major goal of this foundation is to educate as many people as we can about this type of cancer. If you read the stat's most of us are a stage 3 or 4 at DX. "WHY"
Because the majority of people aren't aware of the risk factors and we are not aware of what to look for and be concerned about. Anything not healed in two weeks should be looked at in great depth. Better to error on the safe side and catch in at stage 1 or 2. Early detection is the KEY.!!!!!

With the efforts of this foundation I hope to change that in any small way I can. Everyone knows about Breast, Prostate and lung cancer. Well
guess what "We are here to"

I'd sure be interested in reading any studies that reflect an overall increase in survival rates you mention. Most of the ones I've seen state the overall survival rates for Head & Neck cancer hasn't changed in 20 years or more.

Also the treatment advances, The standard practice is to cut & radiate. It is a diffucult location to have cancer. To many quality of life issues with the type's of surgery, Chemo and radiation.

It will take time for this to happen but I'm SURE it will. There are to many talanted and supportive members of this forum for it not to happen. Welcome again, Dan Bogan

Robert,
Welcome.I cannot help but believe that our survival rates will go up because so many of us, like you, have gotten oral cancer at young ages. One would think that a 40 or 50 year old is much stronger to start than older folks. I for one, remain optimistic about the future. I look forward to hearing more about your progress.

Danny G.

Robert,

Welcome. Any studies with good stats would be nice to see. I am a numbers guy and if I have the opportunity I enjoy learning more about treatment and results for this dreaded disease. My hair never came completely out but I looked like a baby bird when I peered at the mirror walking by. My wife called me Jar Jar Binks. I think it was a compliment but I'm not sure!

Glad you found us and glad to have you.

Ed

Hi Robert and welcome!
I was diagnosed at age 61 and intend to survive 20 years or so........just to
blow those statistics all to hell and back!

Judy U

Judy, you go, girl! Just look over your shoulder, I'm right behind you.

Ed

Welcome Robert!!!

I am a 40 year old female diagnosed with tongue cancer at 38 and have had a couple of reoccurances. My team told me if you get this kind of cancer with no risk factors it tends to be more aggressive and hard to treat. I have found that to be true first hand. Here's praying that you'll beat those statistics. We're here to help.

Lynn

Lynn, would you like to explain further what you mean by "if you get this kind of cancer with no risk factors.... hard to treat."? I feel rather puzzled because I always have the impression that since I don't smoke or drink, with no particular risk factors to oral cancer, the chance of being cured should be higher than those with risk factors. In fact, my oncologist has never mentioned the correlation between risk factors and cancer aggressiveness and recurrence. By the way, I often heard people here talk about the cancer being aggressive. Does it mean the cancerous cells are growing very fast to the extent that the treatment can be difficult? Lynn, thanks for your further input.

Karen.

Karen, I don`t understand the corelation between risk factors and aggressiveness, unless the smoking and drinking continue. Frank`s cancer was aggressive, he had a clean bill of health in April and a one and half centimeter tumor in his sinus in July, that`s what makes it so scary.......Hugs, Dee