CancerCompass message board discussion started by Jonesey on 4/13/2007 http://www.cancercompass.com/message-board/message/all,11272,0.htm Sun, 07 Sep 2008 00:00:00 GMT Sun, 07 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Please reply to my message, if anyone has every been diagnosed with Mucosal Melanoma. Jonesey Fri, 13 Apr 2007 00:00:00 GMT There are a lot of messages on this topic under a topic heading of "Mucosa (sic) Melanoma."  The topic was started on 3/08/06, so you'll have to scroll to about page 6 on the topics listings. Hopefully, you will find some help in the many messages. Esther49 Fri, 27 Apr 2007 00:00:00 GMT  On 4/13/2007 Jonesey wrote:Please reply to my message, if anyone has every been diagnosed with Mucosal Melanoma.I was diagnosed with Mucosal Melanoma in 2001 and had surgery. It returned again in 2002 and had surgery again.All was well until April of 2006 when it was found in my chest, lung and lymph gland in my neck. I have had several different treatments over the past year.Good luck with your fight. Stay strong. Econjr Tue, 15 May 2007 00:00:00 GMT I am so sorry that I have not checked this portion of Cancer Compass in quite a while!!!  My husband was diagnosed with mucosal melanoma in May, 2005.  His began in the sino nasal area. It has been a long two years.  I will be glad to share what we have been through.  Again, I wish I had checked this sooner. Mimip Fri, 18 May 2007 00:00:00 GMT  On 5/18/2007 Mimip wrote:I am so sorry that I have not checked this portion of Cancer Compass in quite a while!!!  My husband was diagnosed with mucosal melanoma in May, 2005.  His began in the sino nasal area. It has been a long two years.  I will be glad to share what we have been through.  Again, I wish I had checked this sooner.  Iceqween Sat, 19 May 2007 00:00:00 GMT hi Iceqween Mon, 21 May 2007 00:00:00 GMT  On 5/19/2007 Iceqween wrote: On 5/18/2007 Mimip wrote:I am so sorry that I have not checked this portion of Cancer Compass in quite a while!!!  My husband was diagnosed with mucosal melanoma in May, 2005.  His began in the sino nasal area. It has been a long two years.  I will be glad to share what we have been through.  Again, I wish I had checked this soon  Iceqween Tue, 22 May 2007 00:00:00 GMT thank you for writing back. my dad started with a cold then he thought it was a sinus infection afther 2 months of this he went to the doctors they said it was a polyp had surgery found out it wasn't a polyp it was a tumor from there he went to sloan kettering cancer center they remove it, that was nov of2005 jan of 2006 two tumors came back, had them removed 4 days later 3 more show up one in his lymphnode under his armpit and one on his rib and arm removed them doc said we keep having surgery this close thats when radation came in then chemotherapy monday thur friday 6 hours a day and to pills for at nite then off for 3 weeks did this for 6 weeks he stop nov 2006 now like I told you the nose bleeds and he holds his head alot like he is in pain, sometimes he gets sick after he eats he has to flush his nose everyday sometimes more has no taste and can't smell.he just turn sixty he's very tired but it doesn't stop him.he still works very hard. did your husband experiment any of this? how long after his surgery did his tumors show up? your husband is in my prayers. please write back. I have a hard time sending this over to you I wrote this 4times when I was ready to send it over Ipush the wrong thing and lose it I hope this works. if you forgot my e-mail its --- Message edited by CancerCompass staff: for personal protection, email address removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----  karen. Iceqween Tue, 22 May 2007 00:00:00 GMT I was diagnosed with MM in July 2004.  From what I read, I guess, to date, 3 1/2 years later, I am one of the lucky ones, not metastatic.  It was in my sinus.  Other than having half my nose cut out (and 5 surgeries) I am still performing at 100%.  At that time, I read all I could, which was not very much -- basically a 10-40% 5 year survival, surgery being the only proven solution, with chemo, biotherary, and radiation all being not proven effective at all.  There use to be a site, no longer supported, by Susan (daughter of a victim of MM) with all links.  Unfortunately, her father died, and it seems she did not keep the site up.  Since this is very rare, there is not any updating publications or any specific research.  I was doing yearly PET scans, but another Onco stated that it will not identify any tumors until they are large, suggesting that it is too late by then, or that you would have noticed it by then anyway (pain?).  It would be nice if there was a blood test (like the one they do for Prostates) to even give us a clue if there is something happening.  If any breakthroughs happen, it will probably be from Cutatious Melanoma, which is much more common.  The vaccine looked interesting for a while, but my understanding is that it proved marginally successful.  My theory is that if a neutral researcher does any pure statistics on all the radiation, chemo and vaccine that are marginally successful, it would be a wash with placebos, meaning they are not hitting the target.  We will all keep waiting and watching and hoping for a true breakthrough.  In the interim, good luck, we all really need it. fredg Sun, 25 Nov 2007 00:00:00 GMT It has been 2 years since you wrote this message. I just found this site. mucosal melanoma is rare . Just think of you . And send you courage!!! Hug Julie haymaker Wed, 12 Mar 2008 00:00:00 GMT  On 3/12/2008 haymaker wrote:It has been 2 years since you wrote this message. I just found this site. mucosal melanoma is rare . Just think of you . And send you courage!!! Hug Julie I am hanging in there, the only treatment recommended is Radiation, and I am not going through the pain of accepting that treatment.  I took part in a "Sutent" drug study by Pizar, and I got very ill after only taking 5 pills.  It required 3 scans in one day, and blood tests every 5 weeks, I opted to quit, and finally I am feeling much better.  I did get a Bacterial Infection, and had some Anti-Biotics which did give some side effects, but I am much better now, and can function fairly well.  My husband and daughter give me a lot of support and I feel blessed.  I get follow ups at MGH every 6 weeks, but there isn't much they can offer me.  I have lost weight but I am trying to eat a lot of protein and gain it back.Do you have mucosal melanoma or know someone who does.  There is an article about it in Reader's Digest.Please correspond with me.Thank youJonesey minrose Thu, 13 Mar 2008 00:00:00 GMT Yes , My husband did, I am so happy you responded. My husband Mark and I both knew this beast could be beat!!! And you are doing it!! Way to go!!! My husbands mucosal was not discovered until it had spread, he was not a canidate for any studies,but did interferon, radation, and focus radation and surgury. We were very happy( they were very kind and willing) with the group at U.C.S.F med center and Dr. Stanley Leong where he does melonma research -sentinal node. They also did Mark's focus radation and were having success in shrinking ALL the brain tumors- that was amazing as we were told "oh the brain tumors will get you" Not true they were shrinking!!!. Mark then did highly aggressive body radation it weaknd him and it was my feeling that this is why the battle turned. But this was Mark's choice, He did every thing to the max! So I still support what he wanted to to . I like hearing that you are listening to what your body can take and what it can not. My gut feeling is that is a great way to fight. keep yourself feeling as stong as posssible and then the body is in better shape to do the battle when and if it needs to. The key is keep hanging on. Focus on the day NOT what the stats say and the Drs. they can be tough cookies. But we need them and research to keep coming up with options and progress and your job is to hang on as they come up with them!!! You keep the faith. do not let my husbands out come scare you. We are all unique and individual. With our own story . Just know there are those out here caring when you do not even know us. In closing I have since learned even from Dr.s that each pateint really is his/her own best Dr. as it is so personal that the patient has the incentive to research and make the best choices for themselves . So trust yourself Girl!!! keep up the good work. P .S. If you feel like it send people to my site. I have Dr. leongs web link there on a page about Mark and am also trying to do my tiney part to help fight the beast. Hugs Julie. www.juliehaymaker.com haymaker Thu, 13 Mar 2008 00:00:00 GMT On 4/13/2007 Jonesey wrote:Please reply to my message, if anyone has every been diagnosed with Mucosal Melanoma. mimi8 Mon, 05 May 2008 00:00:00 GMT My mother just got diagnosed with Mucosal Melanoma in the paranasal sinuses. She has had surgery and finished radiation. What did your husband do after that? What melanoma doctor did he choose and what other treatments? Thanks for sharing! We are so confused on what her next steps should be. Thanks! mimi8 Tue, 06 May 2008 00:00:00 GMT