sinonasal undifferentiated carcinoma

Hey all,  This is my first time seeing this message board.  It is so great to see others going through what I am.  I am a 48 year old male.  I was diagnosed with snuc a little over three years ago.  I have had several surgeries, radiation, chemotherapy, and cyberknife radiation.  The tumors have always been eliminated, but I keep getting new ones.  Yesterday, a tumor was found near my right optic nerve.  It is about as big as the end of my thumb. My doctor was very discouraged, because that area has been treated previously.  He asked me if I wanted to continue trying, or to just let the disease run its course.  Obviously, I want to continue trying!  There is about a 20% chance that more treatment will make me lose the sight in my right eye.  I have already lost my sense of smell, and my right eye will not move properly- due to radiation.  My general health and outlook are great, but this has really discouraged me.  I have always felt like I would make it, now I am not so sure.  Any words of encouragement or help would be greatly appreciated.  

Hello.  My name is April, I am a member of a non profit organization called CaBRI in Ann Arbor, MI.  We are studying SNUC and attempting to learn as much as possible to ultimately determine an effective course of treatment.  Considering there are less than 100 people who have been diagnosed with SNUC at any given time, it is difficult to compile the data and to expect any major breakthroughs as quickly as more commonly known cancers is hopeful but not likely moreso because the larger well financed companies focus their efforts on more widespread types of cancers.  However, finding effective treatment for SNUC could very well have a positive effect on other types of cancers also.  CaBRI's parent company Cayman Chemical was devastated personally from the loss of an employee in 2006 from SNUC and the President of the company has made this a charity project of his in memory of Andrei.  Our goal is, as the case with all cancer, is to learn what course of treatment and the order in which it has been given to patients and to study biopsies and tissue samples.  If you'd like to learn more about us, please visit www.snuc.net.  I hope you are doing well and amidst what you and your family must be enduring, I am simply informing you that CaBRI has an open door to welcome you with utmost compassion and empathy if at any time your family feels they would like to collaborate with CaBRI to get educated.  Take Care. 

April,

I am so pleased that someone is looking into ways of helping people with this very aggressive and deadly cancer.  I was originally diagnosed in February of 2004.  The outlook was very bleak. I could not find any Doctor who knew anything about this cancer, so we basically winged it.  My original treatment was 4 rounds of Cysplatin Chemotherapy.  This reduced the size of the tumor significantly.  I then found a Cranio-facial surgeon willing to surgically remove the remaining tumor.  It took three very difficult surgeries to accomplish, but we did it.  This was followed by several rounds of radiation.  I have had numerous small tumors pop up all over my head and brain in the subsequent three years.  We think this is due to individual cells that survided the initial surgeries and treatments.  Some have been surgically removed as well. I did have more chemotherapy, I don't remember the type, but it was not effective.  The most effective treatment right now has been cyber-knife radiation.  This kills the tumors, and does not damage the surrounding tissue.  We have managed to stay ahead of the cancer with this treatment.

I have not been without a re-occurance for more than six months, but we keep knocking the new tumors down with cyber-knife radiation while they are still small.  I have found a radiation oncologist who has treated 5 previous patients with SNUC. (I am number six.)  Two of them are still alive after five years, so I guess that makes him somewhat of an expert.  His name is Robert Timmerman, and he is at University of Texas Southwestern Medical Center in Dallas.  I don't believe he would have gone with so many surgeries. (I didn't have him as a Doctor at the time.)  The Radiation Oncology number is 214-645-7633.  I highly recommend him. 

I remain positive and healthy, despite all of the difficulties, and know I will beat this cancer.

Thank you for your interest.

Tommyboi

Please keep in touch and let me know of your progress in this endeavor.

Tommyboi,

Thank you so much for taking the time to respond and for offering a history of your fight against SNUC.  The contact information for your Radiation Oncologist will also be valuable .  I will be more than happy to provide you with any new information that CaBRI is able to find.  However, I have to mention it seems as if you are the one that has been blessed with finding the best information and doctors!  You have a very positive attitude and strong will, which has to be working in your favor. 

It would be great to hear from you with updates.  We all at CaBRI wish you health and plan to keep in touch.

April

wondering how you were doing ?gathering info for my husband who has

metasatic snuc

thanks