› Forums › General Melanoma Community › BRAF,Opdivo AND WBR
- This topic has 2 replies, 2 voices, and was last updated 7 years, 9 months ago by
ed williams.
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- May 10, 2018 at 5:43 pm
My brother has been diagnosed with Stage IV melanoma. It is in his brain, lungs, liver, adrenal glands and spleen. He has not had a PET scan. I have been readung about the BRAF gene mutation. Have asked my brother's doctor if he was tested for it. Doctor said tumor testing was backed up and they haven't gotten to his yet. Doc said besides that – whether he is BRAF positive or not, he would still administer Opdivo. He said Opdivo is the best option out there for melanoma. My brother has 6 brain mets. The biggest was removed because it caused him to lose the use of his right arm, balance problems and a seizure. Is it common to do whole brain radiation? They have ordered 10 radiation treatnebts so far. Reading the side effects have really freaked me out. Does all this sound right ? Do we need to go somewhere else?
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- May 10, 2018 at 6:44 pm
I am sorry for what you and your brother are dealing with right now. First and foremost, make sure he is being seen by a melanoma specialist. Next, at times whole brain radiation is used. But, more often for melanoma ~ SRS (stereotactic radiation) or gamma knife radiation is better. There is less damage over all, and brain mets are specifically zapped. There are those here who have had as many as 13 or so lesions done at the same time so it sounds as though your brother could be treated in that manner. While we have also learned that melanoma does not respond to radiation very well if that is all that is done, we also know that when melanoma is treated with radiation and immunotherapy TOGETHER results are much better than with either treatment alone! One other point: Opdivo (also known as nivolumab) is an anti-PD-1 product as is Keytruda (also known as pembrolizumab). They both work in the brain and body and have about a 40% response rate and similar side effect profiles. However, when nivo is given WITH ipilimumb (ipi for short…a CTLA-4 inhibitor…also immunotherapy….also called Yervoy)…this is referred to as the ipi/nivo combo….response rates are 50+%. If I were in your brother shoes that is what I would want. All of these treatments are FDA approved for a Stage IV melanoma patient. As you are experiencing, melanoma doesn't play so I would want to attack as quickly as possible with the best treatment possible. Here is a primer I put together on melanoma treatment that may make this more clear:
Here is a large collection of posts about the benefits of radiation and immunotherapy TOGETHER:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy
Finally, while I don't disagree with doing immunotherapy first rather then BRAF inhibitors. There is no excuse for delaying testing your brother's tumor for his BRAF status. If their lab is unable to process the specimen efficiently they need to have it done elsewhere. Additionally….sometimes BRAF inhibitors can be used to rapidly diminish tumor burden and then switch the patient to immunotherapy. So this information is actually important…now!!!
There is hope. I am a Stage IV melanoma patient post brain and lung mets…treated with SRS, surgery and immunotherapy from 2010 to 2013. I remain NED with no further treatment. Your brother can get there, too!
Ask more questions as you need. This board is filled with lots of caring, smart, melanoma peeps. I wish you and your husband well. Celeste
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- May 11, 2018 at 11:44 am
Hi Mickpatti, just to add to what Celeste gave you about best results for the brain with Melanoma treatments, is a link from last year. I hope it is helpful, they pretty much don't recommend doing single immunotherapy drug approach, they suggest the research supports Ipi/Nivo combination as having best results. Wishing you the best!!!https://www.youtube.com/watch?v=X5xGQpdp9OA
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