mucosal melanoma

 

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 you

Jonesey

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

On 4/13/2007 Jonesey wrote:

Please reply to my message, if anyone has every been diagnosed with Mucosal Melanoma.

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!