judyk

thanks for your post, I go to nyc sloan kettering and they have a melanoma  group there. not many have the mucosal melanoma mostly skin. it is interesting that you had chemo. i had surgery, radiation and more surgery for 5 years but now i guess it will be time to try immunotherapy since they see spots in my liver. i dont have the kit  which helps for immunotherapy. but they will use a combination of immune tx. my friend who lives on the west coast had a chemo from a researcher in china who did a trial with chinese people in china. she had surgery and radiation and now 5 years later she is NED strange,.the sloan doctors didnt recommend it but she is free and I am not NED so maybe it is luck of the draw. sho knows but wish you all the best and gods blessings for your health care journey.

jk

thank you for your reply, i cannot find many people to talk to who have had this dx. mostly it is skin and now I will be having a biopsy for two spots in my liver. i am hoping it is nothing major since i feel fine although melanoma is so aggressive. my next option is immunotherpy which i have been putting off. i have felt so well and i know there are side effects as well as i will be on the medical track. the up side is i have spent 5 years traveling and feeling great so now my health journey has changed. please keep in  touch it helps me to know about others and their treatments. i am in nyc and go to sloan kettering

jk

Thank you for all your info. I am going to Sloan Kettering in ny. They said over 20 years they have had 120 patients.  Half survived but no one over 5 years. Immunotherapy is new and so are the stats I hope for the best but don't have the kit or braf for any targeted therapy.  Ironically my friend was dx also 5 years ago  persuaded her Seattle cancer center oncologist to give her the research chemo developed by a Chinese md in china where it is common. She got very sick but now NED. Who knows luck whatever Sloan knows about but  it is not impressed with it. The down side of immunotherapy is it can destroy your immune system in the process or later.  I guess the benefits outweigh the risks. Today I go again to Sloan to find out the results of my latest scans.  One of the concern it is close to my eye although the last surgery was able to get clear margins.  Surgery always leaves cells behind so far 5 endoscopy has picked away at it but hasn't eliminated it.  I feel well and I try to take each day with gods courage and strength but I am realistic no one has survived this type of cancer. It helps to have people walk the walk with me on my health care journey.  Thank you again.       Judy