Stage IV Diagnosis

Posted By
9/14/2018 1:56pm
Replies: 4

Me in a nutshell...diagnosed with thin uneventful melanoma 11 years ago on mid lower back treated with WLE, at just about year 10 lump felt in groin.  Left groin lymph node dissection with one positive node in April 2016.  Completed one year Keytruda treatment on clinical trial.   Clear scans since...until yesterday wen diagnosed with widespread metastatic disease.  What do I do next?  I am waiting to hear back from UCSF, have been seen there in the past several times but was able to get Keytruda trial through my local onc so have been doing a combination of those two MD's.  

Is there somewhere else I should be seeking care?  I am in California.  I am so overwhelmed.  UCLA, City of Hope, Dr. Weber. MD Anderson?

Going for brain MRI later today.  It was clear in May but we will see as of now.  

Thank you in advance....prayers for all of you warriors.  This board has brought me much information and support over the past several years.  


MelanomaMike - (9/14/2018 - 2:24pm)

Hi, i could be wrong but, i thought you mentioned you where initially diagnosed 2 years ago? And that you started Opdivo/Yervoy combo? Sorry if im incorrect, alotta Anonymouses here at MRF, cant distinguish you all..

Im Melanoma and my host is Mike..

Anonymous - (9/14/2018 - 2:35pm)

This is the unusual progression for thin melanoma. Do you know what was your primary melanoma  depth?

jennunicorn - (9/14/2018 - 9:22pm)

The melanoma specialists at UCSF are some of the best on the west so I wouldn't put too much effort into travelling farther if it's not necessary. It's great if you can do infusions close to home and have a great mel specialist from UCSF on your treating team too. I met lots of great people from all over the states when I was getting infusions there. Wishing you the best.

Jenn - stage IV NED - Completed Ipi/Nivo (Yervoy/Opdivo) + surgery

eric w - (9/14/2018 - 11:23pm)

What is your BRAF?