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July 9, 2014 at 2:31 pm #22086Lana922Participant
I see that the Stand Up 2 Cancer’s melanoma dream team is working on a treatment for BRAF Wild Type melanoma. From their write-up, it sounds like BRAF Wild Type is anything BRAF negative. Is this correct? I haven’t been able to find a good description of exactly what this is.
Can someone provide a good definition for BRAF Wild Type (BRAFwt)?
Link:July 9, 2014 at 5:43 pm #64958kylezParticipant
Lana, I read the article as saying there will always be some mutations, if not BRAF v600e then something else (wild types). Recently Dr. Jeff Weber from Moffitt said that in the near future he sees at least 20 melanoma-related mutations being tested for in addition to BRAF. For my part I have at least 2 wild-type mutations, BRAF g466e and NRAS g12a, tested/found in 2010-2011, and not the BRAF v600e.July 9, 2014 at 8:24 pm #64959 Forty percent of melanoma patients have the BRAF mutation and the rest would be considered wild type. About a third of BRAF, wild-type patients have NRAS mutations; a very small subset of patients have cKit mutant melanoma arising from mucosal, acral, and chronic, sun-damaged sites and make up another proportion of BRAF, wild-type patients. I am happy to see this research and other NRAS clinical trials go forth! I hope this helps.July 9, 2014 at 9:45 pm #64960Lana922Participant So, just to confirm, NRAS is one of the wild type mutations they are targeting with this research?
Thank you Catherine and Kyle!July 9, 2014 at 11:32 pm #64961
Truthfully, it isn’t clear what they are doing with their grant. It does have to do with the genetics but I couldn’t get a sense of the specifics. However, there are studies going on now with NRAS.July 10, 2014 at 1:03 pm #64962 I have been talking to various people about this since last year. They profile the tumor genetics and then use appropriate agents that are known to work against them. They will not be using any immunotheraphies for this at all. Below is the latest info for contact info i got in May…
“I wanted to send you a quick update to let you know that the SU2C melanoma study is finally open. Karmanos Cancer Institute is the site currently enrolling patients. They anticipate additional sites coming on board in the coming months. You can contact the study coordinator, Karen Forman at 313-576-8096,
firstname.lastname@example.org get more information for this study.”July 10, 2014 at 1:58 pm #64963 I don’t know of any agents that work against melanoma except for the BRAF agents and immunotherapies, so what are they using. I think it is very vague..but I will try to find out more.July 10, 2014 at 2:09 pm #64964 I think just chemo agents known to have effectiveness in various mutations…at least that was the impression i got when i talked to someone a while back…i asked about immuno and was told that they would not be used….July 10, 2014 at 4:06 pm #64965bmorrisParticipant Dear Eric
There are agents which are effective against melanoma other than the BRAF inhibitors and immunotherapies. A prominent example is Gleevec (imatinib) in C-Kit positive melanoma which is associated with acral and mucosal melanomas. It is less than 1% of melanomas. BRAF inhibitors are also effective for some braf mutations other than V600E.July 10, 2014 at 4:24 pm #64966
Hi Mr. Morris….I think it is Brett….I correspond with Celeste quite a bit….yeah i realize the targeted therapies and such can be effective for some melanomas…when i talked to these folks my main question was regarding immunos…which they said this would not be used…again it was just some of the info i had found out…tell Celeste howdy..July 10, 2014 at 6:43 pm #64967mary1233Participant I am a mucosal melanoma patient with a wild type mutation. It is hard to find specific information on either.
However – the announcement from Bristol Myers Squibb the other week that the Phase III trial of nivolumab was being halted due to really good results was an exciting bit of news for us wild types. You can check with Catherine Poole on this, but it said in the report that patients who were wild type had to be randomized between the nivolumab arm and the chemotherapy arm. To me, that says that one major point of the study was to evaluate the effect of the PD-1 drug on wild type mutations, and apparently the results were so positive that they said to the chemo arm, “come on over”.
There is another clinical trial of the melanoma wild types being conducted at Sloan Kettering and other cancer centers of a combination therapy of trametinib (I believe a MEK inhibitor) and another drug. This is a Phase II trial.
When I was first diagnosed in 2012 there was very little information and very little that oncologists had to offer post surgery. Since then, the Patterson Institute in the UK did a complete genetic sequencing of mucosal melanoma (which is rarely Braf positive) and the research in immunotherapy has oncologists (and patients) very optimistic and hopeful.
For me, I no longer feel like the red-headed step child. The science is coming around.
My sincere best wishes to all who struggle with this.July 10, 2014 at 7:30 pm #64968
And this new EAP for IPI combined with NIVO does allow mucosal patients as well.
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