› Forums › General Melanoma Community › NRAS mutation
- This topic has 9 replies, 4 voices, and was last updated 7 years ago by
SamS.
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- May 15, 2018 at 11:06 pm
Not BRAF, KIT or KRAS.. my recent met tested as NRAS. Currently all mets have been in my leg, PET showed no evidence of ‘avid lymphadenopathy or metastatic disease’. Just recovering from massive LWE and graft, and handed my results. Freaking out a bit as the report comments NRAS is more aggressive and a worse prognosis. Not offered any treatment besides surgery. Anything I should know ? I’m in New Zealand so things are handled differently here. So I thought I’d ask if anyone has any first hand experience relevant to this. Thanks for your help !
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- May 16, 2018 at 1:08 am
I have been in melanoma world and melanoma research for a LOOOONG time. However, in all of that time, I have not seen any data to indicate that NRAS mutated melanoma is "more aggressive". In fact, there IS data that notes BRAF positive melanoma is actually more aggressive than otherwise. Still, it is true that if you do not have the BRAF mutation, and about half of all melanoma patients do not, you will not benefit from current targeted therapy with BRAF inhibitors.
While pathology reports vary from place to place, and even from individual pathologists and labs…the job of the pathologist is to describe, identify, and collate information from and about the specimen they are sent. To describe treatment and prognosis seems greatly beyond their bailiwick and area of expertise.
Here is some general information on NRAS melanoma if you are interested:
Well….there was going to be a nicely curated selection of articles on NRAS melanoma. However, I have tried twice to post it for you and have been blocked by the strange IT system that is MPIP. So…who knows if this post will even work…but if you are interested…go to my blog (link below) and simply enter "NRAS" in the top left search bubble.
For what it's worth. Hang in there. Celeste
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- May 16, 2018 at 2:32 pm
Hi Sam, I think the point that Celeste was trying to get at is NRAS is not really a factor that Oncologist look at when staging melanoma. Did the report state what stage ie. 1a or 2b etc? If they are not doing a sentinel node biopsy then I would assume that you have a tumor that is not that deep and next steps would be close monitoring and lymph node checks on regular frequency. A little more information would be helpful to be able to give you accurate advice. Take care!!!Ed
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- May 17, 2018 at 12:48 am
Hi Ed, first diagnosed December 2015, I was overseas in the Middle East and had struggled to find anyone willing to even remove my primary from my shin, and the biopsy report was not in much detail aside from it being 1.1mm malignant melanoma. I had wide excision and slnb the following February both of which were ‘clear’. ( samples sent to Paris to get fuller reports), graft to finally close it in April 2016.
January 2017 noticed a blob looked like a mozzie bite but not, nearer my ankle same leg. March it was still there so persuaded surgeon to biopsy it ‘ although it doesn’t look like mekanoma’. Yes it was. Nodular-type, 1mm, sent full report back to a specialist here in New Zealand for opinion. = intransit met. Another wide excision and graft came back NED. Decided to give up overseas contract and return to NZ last July. Struggle even get onto a GP list,( took until December, despite my diagnosis) who could then refer me for the long wait list to see plastic surgeon ( March 2018 soonest I would see her)
January 2018 here’s another mozzie bite but not, a bit further to one side same leg. Finally got to see plastic surgeon in March, who takes me seriously, organises PET scan, and biopsy for April. PET NED yay but lesion is most fast growing yet, mitotic 5, depth 1.35mm. Another intransit met. First chance we’ve had to get a sample tested for braf etc, but it comes back nras. Here is nz very little is funded, and as the research shows low response rate for nras is unlikely to be an option as the govt bases funding on success rates per $. In the time since the April biopsy another lesion appeared, and by the time I went under the knife there was a third within 8cm of the biopsy site so they took a massive chunk out to try and get it all. And another separate bit further up my leg. Big graft but healing well.
They have said watch and wait is my only option, cutting whenever one shows up, that there is nothing else available. No adjuvant option or possible treatment aside from removing more and more of my leg. My results will go to a MDM for discussion again. I am lucky that my intransit are visible on my leg but I can’t see all of my body and since each time I’ve had an appointment we have been focusing on treating the obvious there has not been time to do a full skin check. Not sure how frequently I would be getting scanned if I was elsewhere, but they have said only if I get symptomatic. I know there are people unaware of progression until they get a scan.
I was really reaching out to see if there was anyone else nras on here. And what they did. I’m happy to read research data etc but was hoping for an actual person who had this mutation and experience, willing to share. Nz has the worst survival rates and I guess I’m clutching at straws trying to find anything other than poor prognosis about nras patients because there must be exceptions and I intend to be one. Next specialist appt early June for results from this surgery.
thanks.
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- May 17, 2018 at 1:46 am
There are a number of NRAS folks on this board and perhaps they will respond to you. However, research is comprised of real live ratties. I know. I've been one. So has Ed. We are real live peeps in the "research data"!!! Sadly, I have lost dear ones in melanoma world who were NRAS as well as BRAF positive. While melanoma of any description sucks great big green hairy wizard balls, I don't know that your prognosis strictly due to being NRAS positive is as dismal as you believe. Here is one part of several reports I posted for you:
"In this study, 224 NRAS mutated melanoma patients were studied. 180 were treated with ipi, 98 with anti-PD-1 and 1 was given the ipi/nivo combo. The overall response rate was 15% for those treated with ipi and 34% for those treated with anti-Pd-1….which is in keeping with response rates for those drugs generally."
So….while they may not be logging on here to talk to you…this research gives you 224 NRAS melanoma peeps treated with conventional immunotherapy with a response rate of 15% for ipi (which is exactly the response rate you get if you are BRAF positive) and a 34% response rate for anti-PD-1 (which is very close to the average 40% response rate reported for everyone with melanoma taking that treatment).
Additionally, given the intransit nature of your melanoma you might be interested in looking at the information I posted for VinceMart above…relative to isolated limb perfusion. I don't know if that is an option in New Zealand, but as it is also used for other cancers, perhaps it is something you could look into.
I am sorry for what you are dealing with and very sorry that you do not have more treatment options available to you. Access to care is a huge problem in healthcare generally, and melanoma in particular, across the globe. Despite that, there is hope. Hang tough. Yours, celeste
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- May 17, 2018 at 2:43 am
Hi Sam,
I was going to post last night to commiserate and complain about NRAS not receiving much attention but thought better of it,
I have NRAS, no BRAF, have no idea what this means – but it does not affect my treatment. It removes the TAF/MEK option which is a pity but that is a mixed blessing because for most people TAF/MEK seems only to buy time. And it seems for some people there are serous side effects from taf/mek even though it can work miracles.
so with NRAS i think we depend heavily on immunotherapy and combination immunotherapies: in a way its simpler. I dont think our odds with these are any worse and i think years ago i may have seen a study suggesting they worked better for those with NRAS. Like ed and celeste say, i dont believe NRAS means our disease is particularly aggrssive, not necessarily.
I am more concerned though that your doctors give you immunotherapyand that this is an option for you. I know there are experts in australia who are on the onclive videos (georgina long i think?) and hope new zealand has similar experts. I hope you can find a way to receive this treatment. Also intra lesional. It would be great to receive this as adjuvant now.
i was hoping someone more knowledgeable would post some clinicial trials for nras but i am not sure if there are any. Still, i dont think we are necessarily worse off than those with braf – we lose a treatment option but it maybe that immunotherapy id the best first line treatment anyway, thats what other ratties are testing for us on these boards
sam, sorry i cannot help you too much, but please dont take the nras as a bad sign, from my own experience of slow recurrences and one intransit i dont think it is
good luck Mark
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- May 17, 2018 at 5:07 am
Thank you, Celeste and mark. I really appreciate your kind and knowledgeable words, so thoughtfully written when I am feeling somewhat vulnerable and angry at melanoma. Feeling less isolated and more optimistic, and will certainly push for adjuvant options while I am still well. Really comforting and informative, thank you so much…. I was widowed when my son was 3, so I’m dealing with this alone so it’s been a lot to take in and the hideous wound left from my recent surgery has made this diagnosis and it’s invasive and inescapable effect on my life suddenly demand my attention. Also missing work while I recover.. wondering how I can support myself without income… all these things. I’m sure as the days pass I’ll get a handle on this and feel empowered again, sincere thanks and good wishes.
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- May 17, 2018 at 7:00 pm
I so sorry you are alone and dealing with all the shit that melanoma dishes out. Still, perhaps you can find some small comfort in the fact that many of us here understand a least a bit of what you are going through. In May of 2010, seven years into my melanoma diagnosis with a 10 and 12 year old, newly Stage IV, just post lung surgery and radiation to my brain, and with no other treatment options available, I wrote this:
As someone with 16 surgical scars, here is my new favorite paragraph from a book: Little Bee, by Chris Cleave ~
"On the girl's brown legs there were many small white scars. I was thinking, Do those scars cover the whole of you, like the stars and the moons on your dress? I thought that would be pretty too, and I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived."
Today….with many things on my mind…including you….I wrote this:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/05/whatever-it-takes.html
No, it won't be fun. Or easy. But, you can do this. Yours, Celeste
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