CancerCompass message board discussion started by Mickies on 12/10/2006 http://www.cancercompass.com/message-board/message/all,8210,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ we got the results of the pet scan back on november 30 and it shows that the nasopharyngeal cancer is N3a, M1 metastacized in his right clavicle, both scapula, manubrium, sternum, multiple ribs, multple vertebral bodies, sacrum, both iliac bones, both ischium, left publc ramus and both proximal femurs.  We were initially told that he would undergo radiation daily with three chemo treatments during the radiation and then two chemo treatments at the end of the radiation.  But when we went for the radiation consult the doctor showed us the pet scan and said that he thought the oncologist was probably going to revise that treatment and strictly do chemo and maybe do radiation for pain management.  My husband's headaches are extreme.  this was originally diagnosed on october 30... and still no treatment at all.... they tell us that they can "treat" it but not cure it.  things seem to be moving so fast with the cancer and so slow with the treatment... anyone who has experienced this, please respond, i need honest answers and honest estimates.. we have two teenage boys at home still.. my husband turned 51 on friday.... we've been together 27 years... this is too hard to bare not knowing what we are dealing with. Mickies Sun, 10 Dec 2006 00:00:00 GMT I am a stage 4 cancer survivor and I wish you would get a second opinion asap. What state are you in? NEVER GIVE UP. Ron Cavman Sat, 13 Jan 2007 00:00:00 GMT  On 1/13/2007 Cavman wrote:I am a stage 4 cancer survivor and I wish you would get a second opinion asap. What state are you in? NEVER GIVE UP. RonMy husband was diagnosed with nasopharangeal cancer in october - unfortunately it had already gone to both sides of his neck and metatasized in his bones.  we have been encouraged by the first chemo treatment....(two days of cistaplan and three days of 5FU (they wouldn't give him any radiation either) They also began giving him weekly treatments of Zometa (which we understand is to stregnthen his bones and help with pain management)  Unfortunately the 5FU broke down the veins in his arms too bad for us to be able to do the 5FU this time (we are on a 21 day cycle of chemo) so we went in last week and did two days of Cistaplan and then they sent us home with two weeks work th Xoleda which is the pill form of chemo... My husband only lost his appetite the the third day during the chemo treatment and was week for a week after that... but this time he lost his appetite and hasn't gotten it back.  I think the Xoleda is making him sick... but they put a port in this last time so we can do the Cisplatin and the 5FU the next time.... Did yours metastasize any where?    He is really having trouble with pain management especially in his back and hips... the PET scan showed tumors in both shoulders, his jaw sternum, spine, hips, pelvis, ribs and legs..... Mickies Sat, 13 Jan 2007 00:00:00 GMT we are in Louisiana - My husband is seeing a doctor from the Lousiiana State University medical center.  Mickies Sat, 13 Jan 2007 00:00:00 GMT How is he doing now? Surely he has begun treatment. When I got diagnosed I immediately looked on the internet at hospital rankings for my particular cancer. By that I mean survival rates. I chose the University of Michigan which ranked 4th and they were 45 minutes away. But distance doesn`t matter when it comes to survival. Slan Kettering in NYC ranks first in many cancers along with M.D. Anderson in Texas. I have also heard some miracle stories about the Cancer Centers of America. People do survive even when doctors say they are terminal. God Bless your family. Ron Cavman Mon, 15 Jan 2007 00:00:00 GMT Hello,I have been reading through messages and noticed you mentioned U of M Ann Arbor.  My husband was recently diagnosed with SNUC. He received surgery at U of M a few weeks ago.  They are now setting up dates for radiation and chemotherapy.  I was just wondering if you also received these treatments at U of M?  I have heard that the Tomotherapy radiation is the best for head and neck cancers but U of M does not have this.  I was just wondering if you did receive these treatments here could you please share your experience?  Debbie k Sat, 21 Apr 2007 00:00:00 GMT