New Treatments – Brain Mets – Research Assistance Needed!

Hi Steven,

Where are you located and is your doctor a melanoma specialist? Has she seen a radiation oncologist? Has she had more than one opinion? – BTW  – No to whole brain radiation.

My Mom is 81. Has been Stage IV since late 2013. Had 28 brain mets zapped via Gamma Knife and a craniotomy and is doing great…  We had mixed results with doctors, but have a excellent team now at USC. She would not be alive without them. – And her radiologist is beyond fantastic. – He took care of 17 brain mets in 1 day. (Dr. Eric Chang, @ USC in Los Angeles, CA.)

Is your wife seeing the best?  And has anyone talked to you about gamma knife with an immunotherapy? – That really supper charged my Mom's treatment and we had a few issues, but really knew things were working almost immediately. (She's a miracle case.)

No side effects, unless being an eternal optimist is included.

Keytruda or Yervoy with Gamma Knife is very different compared to Keytruda or Yervoy alone.

Steven,

Was/Is she on Keppra? 1000MG 1x @ night or 500mg 2x?

Hi Steven… I can't find anything regarding further development in that particular research you posted. I have a few questions regarding what your wife has already been through. She began Keytruda infusions in February… yes? How many rounds has she had? When was her last gamma? Did she show new lesions on her latest MRI, or are they previously treated areas still showing? I know that seems like a batch of questions, and zero potential answers for you… but Keytruda can take a little time to respond, I personally, had one additional lesion crop up in my brain 10 months after starting Keytruda… We thought it might be a blood vessel, and didn't gamma radiate it for another 5 months (after it showed some very minor growth). My radiation oncologist gamma zapped it, I continued on Keytruda, and things have otherwise been fine since. The scar from that lesion is still sitting in my head doing nothing, and I've been off Keytruda and treatment free since July 5 of last year. I've also had a new bit of scar tissue from a gamma lesion treated in late 2013 show it's face again. Fortunately, it's remained stable and well behaved for the last 5 months. These things make me curious as to what brings her docs around to the thought that she is "apparently not responding to Keytruda". Not to say that is out of the realm of possibilities, and it is always good to look into a "plan B"… but on the more hopeful side… there are sometimes bumps in the road which aren't necessarily as frightening as they initially appear. 

One additional thought… I have read of some folks having success with a combo of Keytruda and Temodar for keeping brain mets at bay. It's a brain cancer chemo, and I know little about it, but I believe there is someone on this forum who posted about that combo at some point in recent history.

This is the best link that I have to how to manage brain mets in melanoma. https://m.youtube.com/watch?v=jKNESs-s_4k. I have also watch some other presentation by a Boston area neural surgeon talking about gliablastomas brain cancer. https://m.youtube.com/watch?v=VYLoiMJFCq4