Nicky

I was diagnosed with a Desmoplastic Melanoma in 2005, 3.55 mm depth, no regression, some lymph infiltrate.   The surgeons said that they treated it like a soft tissue sarcoma and it is not unusual for them to be quite deep when presented. I have had various other primaries, one superfical spreading melanoma in situ spreading to my lymph nodes in my groin for which I received radiation therapy in 2001. Given my history I pushed to get radiation therapy on the DM to avoid local recurrence.  To date, I have had no further issues and I am currently NED.  

Thanks Carol K.  I am checking in too.  I have been a long term poster on this Board and currently 17 years NED after Stage 3b melanoma, some may remember me.  My treatment back then was surgery and radiation therapy for local control.  I am sending my best wishes to everyone battling this disease.   

Hi, sorry to hear of your diagnosis.  I'm a fellow kiwi living in Australia and have battled this disease for 17 years.  I wish you all the best in your fight.  This board certainly got me through some tough times but armed me with so much knowledge.  I hope that you get the answers you seek.

Hi Janner, that is fantastic news.  I am so happy for you that you have reached this milestone. You have made such an incredible   contribution over the years and giving to others support on this board it is good that you have posted your own positive story.  I may not visit the board much these days but it's lovely to see a familiar name every time I do. Keep up the good work but don't not forget yourself. Wishing you many years of NED. Nicky -17 years NED

Hi there, you sound like you are having an incredibly rough time, this disease can be such a roller coaster.  We are here to support you in any way we can.  Fight it, and tell yourself that melanoma is not going to beat you. Be strong. I wish you all the best in this journey. 

Hi there, sorry for your diagnosis.  You are right to be your own advocate and question and fight for your survival. It's a lesson I learnt 17 years ago when I was first diagnosed with Stage III melanoma.  It has kept me in good stead and has helped me survive two more melanomas.  I wish you all the best in your journey.

Hi, I don’t know whether I am BRAF positive or not. Diagnosed Stage 3b in 2001. Currently NED. There are many long term survivors out there, they just don’t necessarily post. I have had 3 more primary melanomas but none have metastasized thanks to early detection every 3 months. I wish you all the best.

I was also one of the rare unlucky ones. In situ on my right leg, 9 months later it was in my right groin lymph nodes. Thank goodness I’ve stayed alive long enough to see these new treatments, back then there were very few options. Skin checks are so important, I can’t stress that enough. 18 years battling this x%^#{ disease.

Hi Janice, thinking of you at this time.  I was also diagnosed 17 years ago and have been on this board a long time. Stage III melanoma in one lymph node in groin with extracapsulary spread.  Whatever the diagnosis is, we are all hereto support you.  Time will never change that.