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I can give a newly diagnosed patient is stay off the internet unless you are willing to weed throught the reams of old outdated survial numbers, treatment options, and statistics.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