BRAF positive stage 3 long term survivors?

Hi there,

I just started in this support group and i’d like to jump in and say that I was dx stage 3 with centinal nodes positive and had surgery and interferon (didn’t work) in 2002. In 2004 it returned as bumps from the inside on my thigh, knee, and groin lymph nodes. I then had 3 chemos and surgery and 3 chemos. I have been NED since 2005! I do not know if I am Braf positive or negative and have wondered if it makes a difference in survival rates as well.

I am here now because I have a nodule in my calf and will be having it removed and a PET scan on the 11th of April. Removal on the 18th.

All my greatest feats have come rushing back to me but I see there are new drugs now since way back, and I do know friends that unfortunately they failed. I am now 44 yrs old and was 30 when I was positive last.

Prayers for us all!

So glad there are survivors.

Hope this helps-some.

Jennifer

Dearest Celeste,

If I may, I would like to ask you about your experance with Opdivo. I see that you were on it for 3 years, was that the original plan? Is it different than it used to be? I have been perscribed to be treated with it for 1 year (13 rounds once every 4 weeks), but have concernes that it might not be enough. I've seen that a lot of my fellow warriors were on Opdivo much longer than I will have been, and it does give me pause. 

Thanks for your insite and guidence.

Becca

Hi Becca, not trying to answer for Celeste but looking at your history page it shows stage 3, which would mean you are getting Nivo in the adjuvant setting which has only been approved for less than a year. The approval is for one year of treatment trying to hit things early so that it doesn't progress to stage 4 in brain or organs. Here is a link to ASCO series of videos on Onclive from last summer talking about all the pro and cons of adjuvant treatments. If you look at the video down below you will see #'s if you click on # 5 or # 4 you will see several videos that deal with stage 3 folks. https://www.onclive.com/peer-exchange/advanced-melanoma-paradigms/adjuvant-therapy-options-in-melanoma

Hey Becca, 

Ed's my brother from another mother…so he pretty much CAN answer for me, HA!!!  But…for MY answer to your question ~ Ed's major point is well taken.  You are a Stage 3 patient.  I was a Stage IV patient having had 2 cutaneous lesions, positive lymph nodes, brain, lung and tonsilar mets when I entered my Phase 1 trial of Nivo back in December of 2010.  (Actually it was called MDX1106 at that time, then went through a BMS name, then Nivolumab, to become today's Opdivo.)  I and my fellow ratties, half of us with active disease at the start of the trial and half of us NED at that point, took nivo for 2 1/2 years.  My last dose was in June of 2013.  My doctor, Jeff Weber, has told me many times since, that he thinks we took the medicine for far too long…because he believed that a "certain" amount will serve you well.  Taking more of the drug will do no additional good and just put the recipient at greater risk for side effects.  Now…figuring out that "certain" amount has engendered many discussions and studies in the recent years….with docs now mostly agreeing on about 2 years for folks with active disease who respond and 1 year for NED high risk Stage 3 patients.  Melanoma is no fun for anybody at any Stage.  Current FDA approved treatments only began to be so in 2011.  We have a long way yet to go, but – if one must deal with melanoma at all – I think being able to deal with it as you are now…with 1 year of nivo…you are in a good place.  Hope this helps.  Yours, celeste

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.