CancerCompass message board discussion started by McGiver on 4/14/2008 http://www.cancercompass.com/message-board/message/all,23059,0.htm Mon, 01 Dec 2008 00:00:00 GMT Mon, 01 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello! I'm a healthy, 45-year-old male very recently diagnosed with SNUC. While the doctors review my tests and decide treatment, I wondered if anyone has any advice or encouraging stories? Worst case scenario I may lose both eyes. What should I expect? I appreciate any insight!  McGiver Mon, 14 Apr 2008 00:00:00 GMT  On 4/14/2008 McGiver wrote:Hello! I'm a healthy, 45-year-old male very recently diagnosed with SNUC. While the doctors review my tests and decide treatment, I wondered if anyone has any advice or encouraging stories? Worst case scenario I may lose both eyes. What should I expect? I appreciate any insight! If you look further on this sight there is over 200 letters about this condition. All the best Lilypilly Lilypilly Mon, 14 Apr 2008 00:00:00 GMT  On 4/14/2008 McGiver wrote:Hello! I'm a healthy, 45-year-old male very recently diagnosed with SNUC. While the doctors review my tests and decide treatment, I wondered if anyone has any advice or encouraging stories? Worst case scenario I may lose both eyes. What should I expect? I appreciate any insight!  My 17 year old son was diagnosed with SNUC in Feb. 2008.  He is receiving daily radiation treatments and 3 days of chemo every 3 weeks.   He has had 26 radiation treatments, with another 7 - 10 treatments expected. The chemo drugs he is getting are VP-16 (Etoposide) and Cisplatin.  So far, things are going pretty well.  Other than mouth sores, he is handling this well.  He had an MRI this week and it showed the tumor has shrunk.  We are awaiting a decision from the doctors about how many more radiation/chemo treatments he will need, but we are encouraged by the MRI.  His tumor started in his sinus and grew toward his brain.  He is fortunate that it has not effected his optic nerve, but we have been told that the radiation may damage the nerve somewhat.  Only time will tell.  God bless you!  mljmom Thu, 17 Apr 2008 00:00:00 GMT Thank you for replying! The more I learn about SNUC, the better I can combat it! Please tell your son to hang in there...what a brave young person! Sounds like things are going his way!!!!I am still waiting for surgery. My team believes surgery is the first step, followed by radiation. My tumor is quite large, and is definitely effecting my eyes. Keep in touch, and send your son my very best! McGiver Mon, 21 Apr 2008 00:00:00 GMT  On 4/21/2008 McGiver wrote:Thank you for replying! The more I learn about SNUC, the better I can combat it! Please tell your son to hang in there...what a brave young person! Sounds like things are going his way!!!!I am still waiting for surgery. My team believes surgery is the first step, followed by radiation. My tumor is quite large, and is definitely effecting my eyes. Keep in touch, and send your son my very best!McGiver, I too wanted to learn all there was to learn about SNUC. I doubted my ENT and Oncology doctors, tried to second-guess them. and went for a 2nd opinion. What I found was that there are only about 100 recorded cases in medical literature in the English language, that my doctor was the top specialist in this cancer in my area, and that the treatment regimen recommended was exactly the one used with those who survived. When I told him "it looks like we are all looking at the same database" he said "you did your homework."I'm 38 yrs old, was diagnosed with SNUC June 2006, did chemo and radiation Aug 2006, had cranial facial surgery Oct 2006 (and 3 others due to complications thru Jan 2007), had eye surgery Nov 2007 and a final eye surgey Feb 2008 which restored my sight. I am so thankful to my doctor that I sent her office an arrangement of flowers. I wish you well! Kayak101 Mon, 21 Apr 2008 00:00:00 GMT My husband does not have the same type of cancer but we went to Fla yesterday for a consult.I  asked for this cancercompass group about proton radiation therapy. This doc's wife heads up the use in Jacksonville, Fla. He mentioned they are using it for sinus cancer. I think I would check into it!DeniseB DeniseB Tue, 22 Apr 2008 00:00:00 GMT Thanks for the reply and best wishes to you as well!Would you be willing to share the name of your doctor? And can you elaborate on what kind of "complications" I might need to be aware of? Honestly, I have never had surgery before in my life, so I feel like I am really entering uncharted waters! Thanks again!!! McGiver Tue, 22 Apr 2008 00:00:00 GMT Sure.  A couple of days after surgery, when I was still unconscious, the male nurse noticed I was kicking and punching. He relayed this to the doctor who ordered an mri or scan right away. My head had filled up with blood and spinal fluid. They took me to surgery and opened a freshly-replaced piece of skull (about the size of 2 golf balls put together) to drain me. This happened a 2nd time after which they attached tubes to the back of my head to drain the fluids for a week and left the piece of skull off for 3 months. Kayak101 Tue, 22 Apr 2008 00:00:00 GMT I'm sorry I forgot to give you the doctor's name. He is Dr. Lawrence DiNardo (ENT in Oncology) with MCV Hospitals, part of the VCU Health System in Richmond.  Other notable specialists I found were in the UVA Medical Center, Sloan-Kettering in NY, MD Anderson in Houston, and UCLA. Kayak101 Tue, 22 Apr 2008 00:00:00 GMT I am sorry I don't have a lot of info about the proton therapy, but this doc is (according to multiple radiation oncologists) "world renowned" and well published--google him and his wife.--Dr William "Bill" Mendenhall and Dr Nancy Mendenhall. He said they were using the proton unit for sinus cancer because of the possible complications the cancer treatment can cause  the optic nerves.Dr Bill is at Shands Hospital--employeed by Univ. of Fla. and his wife is working out of Jacksonville, Fla.Keep us updated!!DeniseB  DeniseB Wed, 23 Apr 2008 00:00:00 GMT Hi, my husband was just diagnosed last week with snuc. He goes to the VA and we ave to drive 4 hours to Milwaukee. It figures one of the best docs is in FL. We just moved to Iron Mountain, MI 3 months ago.It does seem to me that the docs we have are right on top of this and aren't messing around. We have to trust in them and of course I am learning as much as I can about this disease. kristinamich Sun, 04 May 2008 00:00:00 GMT  On 5/4/2008 kristinamich wrote:Hi, my husband was just diagnosed last week with snuc. He goes to the VA and we ave to drive 4 hours to Milwaukee. It figures one of the best docs is in FL. We just moved to Iron Mountain, MI 3 months ago.It does seem to me that the docs we have are right on top of this and aren't messing around. We have to trust in them and of course I am learning as much as I can about this disease. Hi: My husband was diagnosed with nasal cancer in October of 06, we wentto Mayo Clinic, Rochester, MN.  However, a local radiologist,quote anoncologist put him through 27 treatments of rad. Only made him worse,since the first operation had already removed all the cancer.  After rad,we made three more trips to Mayo in 07, surgery and was clean untilthis past March, 08, now is in myeloma treatment.  By all means, getyourself to a specialist at Mayo.  Sinus cancer is not one very manydoctors know for sure how to treat.  Mayo has excellent sinus cancerdoctors on staff and also their cancer unit is tops.  We live just belowthe straits bridge which connects the two Michigans.  It is a long tripbut well worth it.  Good luck.  ozy1    ozy31 Sun, 04 May 2008 00:00:00 GMT Hi, I only wish we could get to the Mayo clinic. Unfortunately we live on social security and right now are having a tough time just making it to Milwaukee. The doc eading up the team seems to be knowlegable on this type of cancer and he is also consulting with a head and neck oncologist.Pray for us we need it.What city do you live in? We are in Iron Mountain, love it here.ty, Kristinamich kristinamich Sun, 04 May 2008 00:00:00 GMT  On 5/4/2008 kristinamich wrote:Hi, I only wish we could get to the Mayo clinic. Unfortunately we live on social security and right now are having a tough time just making it to Milwaukee. The doc eading up the team seems to be knowlegable on this type of cancer and he is also consulting with a head and neck oncologist.Pray for us we need it.What city do you live in? We are in Iron Mountain, love it here.ty, KristinamichHi Kristinamich:We live in Cheboygan, Michigan, just below the bridge.  We didn't have a doctor in the area that knew anything about nasal cancer and our ENTsent us to Mayo in Oct. 06, It is a stretch, financially, but we are so fortunate to have found a doctor at Mayo that understands our problems.We too are living on Social Security but I am ten years younger and amstill working when I can: some teaching and what ever I can do right now.My husband is able to get around and do for himself and that really helps. We go to Saginaw once a month to get the chemo pills which he takes at home, so far so good.Let me know how you are doing and if I can just listen, that would be great also.  Good luck and let's hope all turns out for you.  My husband is a veteran of the Korean war so is older, but in good health otherwise.Talk to you later.ozy1   ozy31 Mon, 05 May 2008 00:00:00 GMT What is undifferentiated carinoma i had an undifferenitated nuroenductine cancer called merkles...very rare do you have that did you ever hear these words associated with this that you have?? jusykitty Fri, 09 May 2008 00:00:00 GMT  On 4/22/2008 McGiver wrote:Thanks for the reply and best wishes to you as well!Would you be willing to share the name of your doctor? And can you elaborate on what kind of "complications" I might need to be aware of? Honestly, I have never had surgery before in my life, so I feel like I am really entering uncharted waters! Thanks again!!!Looking for any updates on treatments ,doctors husband has snuclooking for infothanks murphy27 Mon, 24 Nov 2008 00:00:00 GMT