brain mets

Second opinions — I'm definitely a big fan of getting one, especially if you can get one at a top facility.  Lacking any other resources, US News/World Report maintains a list of top-rated neuro programs in the U.S.

Don't know where you're being seen, but have you looked for a second opinion on the radiation/SRS?  I had SRS and brain met surgery at top 5 facility on this list. 9 months earlier, I had SRS and brain met surgery at a facility not listed. To me the difference was night and day between the two.

So not all neurosurgery deparatments are equal. And maybe not even all SRS machines are equal either. What can't be done at one facility, in some cases might be doable elsewhere, especially in a top-flight neurosurgery department with the latest techniques, equipment and doctors.

Trials for brain met patients — This is a brain met trial for anti-PD1, don't know how hard it is to qualify or if they're still open. Here's a broader search for trials for melanoma brain mets. 

Hope it will work out soon that you find your way to a good next treatment.

– Kyle 

P. S. If you want to try the trial route — not know to be easy for someone with brain mets — my experience for getting into a trial using clinicaltrails.gov is as follows. For a given trial listing, use the facility names, the contact info/phone #s and try to reach the "clinical trial coordinator" at the site. Some facliities (including some big well-known ones) won't give you the time of day unless you go in for an appointment. Others will go out of their way to answer your questions, and especially talk you through how likely you might be to qualify for one of their trials. When I found one that seemed like a good possibility, I make an appointment in-person. I ended up getting into a trial there, but a different one than I was actually going for. To get to that point, I spent a couple of weeks on the phone, it seemed like. 

Second opinions — I'm definitely a big fan of getting one, especially if you can get one at a top facility.  Lacking any other resources, US News/World Report maintains a list of top-rated neuro programs in the U.S.

Don't know where you're being seen, but have you looked for a second opinion on the radiation/SRS?  I had SRS and brain met surgery at top 5 facility on this list. 9 months earlier, I had SRS and brain met surgery at a facility not listed. To me the difference was night and day between the two.

So not all neurosurgery deparatments are equal. And maybe not even all SRS machines are equal either. What can't be done at one facility, in some cases might be doable elsewhere, especially in a top-flight neurosurgery department with the latest techniques, equipment and doctors.

Trials for brain met patients — This is a brain met trial for anti-PD1, don't know how hard it is to qualify or if they're still open. Here's a broader search for trials for melanoma brain mets. 

Hope it will work out soon that you find your way to a good next treatment.

– Kyle 

P. S. If you want to try the trial route — not know to be easy for someone with brain mets — my experience for getting into a trial using clinicaltrails.gov is as follows. For a given trial listing, use the facility names, the contact info/phone #s and try to reach the "clinical trial coordinator" at the site. Some facliities (including some big well-known ones) won't give you the time of day unless you go in for an appointment. Others will go out of their way to answer your questions, and especially talk you through how likely you might be to qualify for one of their trials. When I found one that seemed like a good possibility, I make an appointment in-person. I ended up getting into a trial there, but a different one than I was actually going for. To get to that point, I spent a couple of weeks on the phone, it seemed like. 

Second opinions — I'm definitely a big fan of getting one, especially if you can get one at a top facility.  Lacking any other resources, US News/World Report maintains a list of top-rated neuro programs in the U.S.

Don't know where you're being seen, but have you looked for a second opinion on the radiation/SRS?  I had SRS and brain met surgery at top 5 facility on this list. 9 months earlier, I had SRS and brain met surgery at a facility not listed. To me the difference was night and day between the two.

So not all neurosurgery deparatments are equal. And maybe not even all SRS machines are equal either. What can't be done at one facility, in some cases might be doable elsewhere, especially in a top-flight neurosurgery department with the latest techniques, equipment and doctors.

Trials for brain met patients — This is a brain met trial for anti-PD1, don't know how hard it is to qualify or if they're still open. Here's a broader search for trials for melanoma brain mets. 

Hope it will work out soon that you find your way to a good next treatment.

– Kyle 

P. S. If you want to try the trial route — not know to be easy for someone with brain mets — my experience for getting into a trial using clinicaltrails.gov is as follows. For a given trial listing, use the facility names, the contact info/phone #s and try to reach the "clinical trial coordinator" at the site. Some facliities (including some big well-known ones) won't give you the time of day unless you go in for an appointment. Others will go out of their way to answer your questions, and especially talk you through how likely you might be to qualify for one of their trials. When I found one that seemed like a good possibility, I make an appointment in-person. I ended up getting into a trial there, but a different one than I was actually going for. To get to that point, I spent a couple of weeks on the phone, it seemed like. 

I'm also a huge proponent of 2nd opinions. If I were you I'd get a 2nd and even a 3rd opinion. Doing this led us to finding out my Mom HAD brain mets. – We were told there were none!

If you are in the Los Angeles area I highly recommend Dr. Eric Chang. He opened the MD Anderson clinic's gamma knife radiation department and is now at USC Los Angeles. In April he and his team took care of 17 brain mets my Mom had. – A week earlier we had been told to wait and see how things went. NOT great advice. Especially when she had 5 in her frontal lobe.

I don't know if you've done anything other than the BRAF pill. This was an option for my Mom, but she ended up having the gamma knife radiation and started Yervoy 4 days later. – I understand that the two together have a synergistic effect and its been shown to have better outcomes for people. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3892394/

It's been less that 1 year since we found out about my Mom's stage IV diagnosis and she's done really really well.  – She has had 25 brain mets treated (the first time there were 8) we expect her to be around a long while because of her response to Yervoy. – Yervoy does have an effect on the brain because there are T-Cells in the brain.

– I've already heard that the PD-1's may have just as good or better results, but you may not want to wait to see if you can get into a trial or get the infusion.

I'm also a huge proponent of 2nd opinions. If I were you I'd get a 2nd and even a 3rd opinion. Doing this led us to finding out my Mom HAD brain mets. – We were told there were none!

If you are in the Los Angeles area I highly recommend Dr. Eric Chang. He opened the MD Anderson clinic's gamma knife radiation department and is now at USC Los Angeles. In April he and his team took care of 17 brain mets my Mom had. – A week earlier we had been told to wait and see how things went. NOT great advice. Especially when she had 5 in her frontal lobe.

I don't know if you've done anything other than the BRAF pill. This was an option for my Mom, but she ended up having the gamma knife radiation and started Yervoy 4 days later. – I understand that the two together have a synergistic effect and its been shown to have better outcomes for people. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3892394/

It's been less that 1 year since we found out about my Mom's stage IV diagnosis and she's done really really well.  – She has had 25 brain mets treated (the first time there were 8) we expect her to be around a long while because of her response to Yervoy. – Yervoy does have an effect on the brain because there are T-Cells in the brain.

– I've already heard that the PD-1's may have just as good or better results, but you may not want to wait to see if you can get into a trial or get the infusion.

I'm also a huge proponent of 2nd opinions. If I were you I'd get a 2nd and even a 3rd opinion. Doing this led us to finding out my Mom HAD brain mets. – We were told there were none!

If you are in the Los Angeles area I highly recommend Dr. Eric Chang. He opened the MD Anderson clinic's gamma knife radiation department and is now at USC Los Angeles. In April he and his team took care of 17 brain mets my Mom had. – A week earlier we had been told to wait and see how things went. NOT great advice. Especially when she had 5 in her frontal lobe.

I don't know if you've done anything other than the BRAF pill. This was an option for my Mom, but she ended up having the gamma knife radiation and started Yervoy 4 days later. – I understand that the two together have a synergistic effect and its been shown to have better outcomes for people. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3892394/

It's been less that 1 year since we found out about my Mom's stage IV diagnosis and she's done really really well.  – She has had 25 brain mets treated (the first time there were 8) we expect her to be around a long while because of her response to Yervoy. – Yervoy does have an effect on the brain because there are T-Cells in the brain.

– I've already heard that the PD-1's may have just as good or better results, but you may not want to wait to see if you can get into a trial or get the infusion.

IPI — yes, long response time but that's an average. What if you were on the fast side of the average? Some believe combining some kind of radiation with IPI can result in tumor shrinkage at locations other than the ones irradiated. My docs think IPI has helped my brain mets. If IPI is the only option available, maybe it's worth a shot. 

IPI — yes, long response time but that's an average. What if you were on the fast side of the average? Some believe combining some kind of radiation with IPI can result in tumor shrinkage at locations other than the ones irradiated. My docs think IPI has helped my brain mets. If IPI is the only option available, maybe it's worth a shot. 

IPI — yes, long response time but that's an average. What if you were on the fast side of the average? Some believe combining some kind of radiation with IPI can result in tumor shrinkage at locations other than the ones irradiated. My docs think IPI has helped my brain mets. If IPI is the only option available, maybe it's worth a shot.