ipi or Pd1 on brain mets.

In my reading I find that PD1 has close to 40% response rate overall and IPI about 20%.  So considering you have other mets to consider,  I would go with PD1.  Radiation is really the best treatment for brain mets because the blood/brain barrier really doesn't let much through.  

You have good points anonymous.  But…like I discussed in my last blog posting….with the use of novel immunotherapies like ipi and anti-PD1….they are NOT like old time chemo.  We don't have to worry about the DRUG getting through the blood brain barrier….just the cytotoxic T-cells the drugs trigger!!!  And they do!  The only other problem is that patients with untreated brain mets are rarely allowed in clinical trials…which is currently the only place anti-PD1 is available…but they ARE allowed after the mets are treated with radiation like SRS and found to be stable on follow-up scans.  However, many of the big dogs in melanoma research are advocating a change in that thinking…..

Melanoma Brain Metastases: Is it time to reassess the bias? By: Flanigan, Sznol, et al. July 2012. These authors note that melanoma brain met patients are typically excluded from trials. They conducted a chart review of 251 metastatic melanoma patients diagnosed after 2005 to evaluate them in the context of eligibility for treatment with novel agents. And "found median survival of malignant effusion (mets in the pleural cavity) patients was significantly shorter than brain met patients (2 vs 8 months)." Therefore, "exclusion of melanoma brain met patients from clinical research programs is no longer justified and alternate investigational approaches, possibly combining local and systemic therapies, are greatly needed for these individuals."

Additionally, there are many studies demonstrating that whatever effect ipi and anti-PD1 have in the body, they have the concomitant result in the brain.  Best, c

You have good points anonymous.  But…like I discussed in my last blog posting….with the use of novel immunotherapies like ipi and anti-PD1….they are NOT like old time chemo.  We don't have to worry about the DRUG getting through the blood brain barrier….just the cytotoxic T-cells the drugs trigger!!!  And they do!  The only other problem is that patients with untreated brain mets are rarely allowed in clinical trials…which is currently the only place anti-PD1 is available…but they ARE allowed after the mets are treated with radiation like SRS and found to be stable on follow-up scans.  However, many of the big dogs in melanoma research are advocating a change in that thinking…..

Melanoma Brain Metastases: Is it time to reassess the bias? By: Flanigan, Sznol, et al. July 2012. These authors note that melanoma brain met patients are typically excluded from trials. They conducted a chart review of 251 metastatic melanoma patients diagnosed after 2005 to evaluate them in the context of eligibility for treatment with novel agents. And "found median survival of malignant effusion (mets in the pleural cavity) patients was significantly shorter than brain met patients (2 vs 8 months)." Therefore, "exclusion of melanoma brain met patients from clinical research programs is no longer justified and alternate investigational approaches, possibly combining local and systemic therapies, are greatly needed for these individuals."

Additionally, there are many studies demonstrating that whatever effect ipi and anti-PD1 have in the body, they have the concomitant result in the brain.  Best, c

You have good points anonymous.  But…like I discussed in my last blog posting….with the use of novel immunotherapies like ipi and anti-PD1….they are NOT like old time chemo.  We don't have to worry about the DRUG getting through the blood brain barrier….just the cytotoxic T-cells the drugs trigger!!!  And they do!  The only other problem is that patients with untreated brain mets are rarely allowed in clinical trials…which is currently the only place anti-PD1 is available…but they ARE allowed after the mets are treated with radiation like SRS and found to be stable on follow-up scans.  However, many of the big dogs in melanoma research are advocating a change in that thinking…..

Melanoma Brain Metastases: Is it time to reassess the bias? By: Flanigan, Sznol, et al. July 2012. These authors note that melanoma brain met patients are typically excluded from trials. They conducted a chart review of 251 metastatic melanoma patients diagnosed after 2005 to evaluate them in the context of eligibility for treatment with novel agents. And "found median survival of malignant effusion (mets in the pleural cavity) patients was significantly shorter than brain met patients (2 vs 8 months)." Therefore, "exclusion of melanoma brain met patients from clinical research programs is no longer justified and alternate investigational approaches, possibly combining local and systemic therapies, are greatly needed for these individuals."

Additionally, there are many studies demonstrating that whatever effect ipi and anti-PD1 have in the body, they have the concomitant result in the brain.  Best, c

The other thing, I believe, pertinent to the initial question is that for  EAP for anti-PD-1 requires having had Ipi. As Celeste said most trials, for now, require stable brain mets. Ipi seems the likely choice of the two options.

The other thing, I believe, pertinent to the initial question is that for  EAP for anti-PD-1 requires having had Ipi. As Celeste said most trials, for now, require stable brain mets. Ipi seems the likely choice of the two options.

The other thing, I believe, pertinent to the initial question is that for  EAP for anti-PD-1 requires having had Ipi. As Celeste said most trials, for now, require stable brain mets. Ipi seems the likely choice of the two options.

In my reading I find that PD1 has close to 40% response rate overall and IPI about 20%.  So considering you have other mets to consider,  I would go with PD1.  Radiation is really the best treatment for brain mets because the blood/brain barrier really doesn't let much through.  

In my reading I find that PD1 has close to 40% response rate overall and IPI about 20%.  So considering you have other mets to consider,  I would go with PD1.  Radiation is really the best treatment for brain mets because the blood/brain barrier really doesn't let much through.  

Hi Dave,

I have a question for you with the whole brain radiation.  My dad has 2 mets on his brain and we were given the option of more of a focused cyber knife radiation, surgery or WBR.  They said if we wanted to never think about brain mets again WBR would be the way to go (after potential surgery on one of the bigger one).  They said though that some people experience that they were not as "sharp" as they once were.  Have you found this to be the case?  We were going to keep WBR in our back pocket for awhile because my Dad didn't like the sound of that but just wondering if you've experienced anything from the radiation that you've noticed.  Sounds like they are going to do surgery on him regardless, so one step at a time, but just wondering if we should consider WBR in the future.

Also, are you BRAF + or -? 

Thanks!

Ashley

Hi Dave,

I have a question for you with the whole brain radiation.  My dad has 2 mets on his brain and we were given the option of more of a focused cyber knife radiation, surgery or WBR.  They said if we wanted to never think about brain mets again WBR would be the way to go (after potential surgery on one of the bigger one).  They said though that some people experience that they were not as "sharp" as they once were.  Have you found this to be the case?  We were going to keep WBR in our back pocket for awhile because my Dad didn't like the sound of that but just wondering if you've experienced anything from the radiation that you've noticed.  Sounds like they are going to do surgery on him regardless, so one step at a time, but just wondering if we should consider WBR in the future.

Also, are you BRAF + or -? 

Thanks!

Ashley

Ashley, every patient is different and every treatment works differently in different people. So I don't think that there is one "correct" answer here. I will say, though, that generally speaking, neurosurgery is the first choice for brain tumors because then you know the tumor(s) is gone. Stereotactic radiosurgery ("SRS" sometimes called Cyber Knife or Gamma Knife) is the second choice because the focused beams cause minimal damage to healthy brain tissue. Whole brain radiation is usually reserved for last because it can cause later problems with speech, hearing, memory, etc. Not everyone has those problems, but some do.

Your profile says that your father is going to Dana Farber, which has a great melanoma program. That's why I don't understand that someone there told you that after WBR you would never have to think about bran mets again. That is completely false. I can't believe any doctor told you that. WBR is considered "palliative" (i.e. temporarily relieving symptoms) not "curative". Current brain mets can be resistant to WBR and/or can come back a few months after WBR. New brain mets can appear at any time, especially if they get spread from tumors elsewhere in the body. 

It is very important to get rid of brain mets as quickly as possible because they can bleed and cause a stroke. Neurosurgery or SRS are the current preferred methods; WBR when necessary. But no matter which treatment you choose, brain mets can come back again. 

Ashley, every patient is different and every treatment works differently in different people. So I don't think that there is one "correct" answer here. I will say, though, that generally speaking, neurosurgery is the first choice for brain tumors because then you know the tumor(s) is gone. Stereotactic radiosurgery ("SRS" sometimes called Cyber Knife or Gamma Knife) is the second choice because the focused beams cause minimal damage to healthy brain tissue. Whole brain radiation is usually reserved for last because it can cause later problems with speech, hearing, memory, etc. Not everyone has those problems, but some do.

Your profile says that your father is going to Dana Farber, which has a great melanoma program. That's why I don't understand that someone there told you that after WBR you would never have to think about bran mets again. That is completely false. I can't believe any doctor told you that. WBR is considered "palliative" (i.e. temporarily relieving symptoms) not "curative". Current brain mets can be resistant to WBR and/or can come back a few months after WBR. New brain mets can appear at any time, especially if they get spread from tumors elsewhere in the body. 

It is very important to get rid of brain mets as quickly as possible because they can bleed and cause a stroke. Neurosurgery or SRS are the current preferred methods; WBR when necessary. But no matter which treatment you choose, brain mets can come back again. 

Ashley, every patient is different and every treatment works differently in different people. So I don't think that there is one "correct" answer here. I will say, though, that generally speaking, neurosurgery is the first choice for brain tumors because then you know the tumor(s) is gone. Stereotactic radiosurgery ("SRS" sometimes called Cyber Knife or Gamma Knife) is the second choice because the focused beams cause minimal damage to healthy brain tissue. Whole brain radiation is usually reserved for last because it can cause later problems with speech, hearing, memory, etc. Not everyone has those problems, but some do.

Your profile says that your father is going to Dana Farber, which has a great melanoma program. That's why I don't understand that someone there told you that after WBR you would never have to think about bran mets again. That is completely false. I can't believe any doctor told you that. WBR is considered "palliative" (i.e. temporarily relieving symptoms) not "curative". Current brain mets can be resistant to WBR and/or can come back a few months after WBR. New brain mets can appear at any time, especially if they get spread from tumors elsewhere in the body. 

It is very important to get rid of brain mets as quickly as possible because they can bleed and cause a stroke. Neurosurgery or SRS are the current preferred methods; WBR when necessary. But no matter which treatment you choose, brain mets can come back again. 

Thanks for your response, that is a bit disconcerning.  It wasn't a melanoma specialist that was telling us this, it was the radiology department.  I agree with you, everything I've read says that they can come back.  This disease sucks.

Thanks for your response, that is a bit disconcerning.  It wasn't a melanoma specialist that was telling us this, it was the radiology department.  I agree with you, everything I've read says that they can come back.  This disease sucks.

I'm not sure who you referrng to when you say "the radiology department". I sure hope it wasn't the radiation oncologist. If it was, I would talk to my hematology oncologist or my neurosurgeon and get a different radiation oncologist. 

I'm not sure who you referrng to when you say "the radiology department". I sure hope it wasn't the radiation oncologist. If it was, I would talk to my hematology oncologist or my neurosurgeon and get a different radiation oncologist. 

I'm not sure who you referrng to when you say "the radiology department". I sure hope it wasn't the radiation oncologist. If it was, I would talk to my hematology oncologist or my neurosurgeon and get a different radiation oncologist. 

Thanks for your response, that is a bit disconcerning.  It wasn't a melanoma specialist that was telling us this, it was the radiology department.  I agree with you, everything I've read says that they can come back.  This disease sucks.

I agree with POW.  The only reason we did whole brain over Gamma Knife is to buy some extra time for the B-raf/MEK to kick in before any new spots pop up in the brain.  There is absolutely no guarantee that it will permanently kill all cancer in the brain.  The gamma knife is supposed to be a great approach to removal but my oncologists were nervous because the spots in my brain just popped up in the last 4 weeks so they were betting on more showing up in the near future.  

After 10 treatments, 5 more to go, I have noticed ZERO difference with memory, personality, pain, fatigue, or anything.  I actually feel great right now.  It's supposed to get worse after the last few treatments.  I should have some fatigue and hair loss.  

To get on the B-raf/MEK you have to be BRAF positive.  But, if your Dad is positive, they are telling me that there is a 76% rate of tumor shrinkage or disappearance, 20% rate of stabilization, and only 4% chance of no improvement.  Those are incredible odds for any Melanoma drug.

Good luck to you guys!  Stay positive.

Dave

I agree with POW.  The only reason we did whole brain over Gamma Knife is to buy some extra time for the B-raf/MEK to kick in before any new spots pop up in the brain.  There is absolutely no guarantee that it will permanently kill all cancer in the brain.  The gamma knife is supposed to be a great approach to removal but my oncologists were nervous because the spots in my brain just popped up in the last 4 weeks so they were betting on more showing up in the near future.  

After 10 treatments, 5 more to go, I have noticed ZERO difference with memory, personality, pain, fatigue, or anything.  I actually feel great right now.  It's supposed to get worse after the last few treatments.  I should have some fatigue and hair loss.  

To get on the B-raf/MEK you have to be BRAF positive.  But, if your Dad is positive, they are telling me that there is a 76% rate of tumor shrinkage or disappearance, 20% rate of stabilization, and only 4% chance of no improvement.  Those are incredible odds for any Melanoma drug.

Good luck to you guys!  Stay positive.

Dave

Thank you both… and yes Dave, those are really good odds for a melanoma drug!  Unfortunately he is BRAF negative.  I do 100% trust the team we are working with, they have been wonderful.  This must have been a slip when they were saying that, they were probably meaning to say that we'd be free from the disease for awhile so we could try to get the drugs kick in.  I'm staying up on my reading so I know when they slip, but all in all, they have been fantastic.

Good luck to both of you, I really hope they rid the world of this terrible disease!

Ashley

Thank you both… and yes Dave, those are really good odds for a melanoma drug!  Unfortunately he is BRAF negative.  I do 100% trust the team we are working with, they have been wonderful.  This must have been a slip when they were saying that, they were probably meaning to say that we'd be free from the disease for awhile so we could try to get the drugs kick in.  I'm staying up on my reading so I know when they slip, but all in all, they have been fantastic.

Good luck to both of you, I really hope they rid the world of this terrible disease!

Ashley

When I went to the Moffit Cancer Institute, Dr. Jeffrey Weber talked about several non B-raf options.  One involves removal and reinsertion of the cancer after treating the diseased cells.  Basically, it's a form of Stem Cell from what I understand but they don't call it that.

I don't know who your Oncologist is, but I can tell you that mine calls Dr. Weber for advice often and Dr. Weber always returns his calls promptly and is willing to look at anything he sends him.  He's a great resource and one of the most knowledgeable Melanoma Doctors in the country.  Get with your Dad's oncologist and let him know that Weber's got several new trials starting in the next month and some other options that he should discuss with him.  There's now multiple options for curing Melanoma that weren't available even 6 months ago.  

When I went to the Moffit Cancer Institute, Dr. Jeffrey Weber talked about several non B-raf options.  One involves removal and reinsertion of the cancer after treating the diseased cells.  Basically, it's a form of Stem Cell from what I understand but they don't call it that.

I don't know who your Oncologist is, but I can tell you that mine calls Dr. Weber for advice often and Dr. Weber always returns his calls promptly and is willing to look at anything he sends him.  He's a great resource and one of the most knowledgeable Melanoma Doctors in the country.  Get with your Dad's oncologist and let him know that Weber's got several new trials starting in the next month and some other options that he should discuss with him.  There's now multiple options for curing Melanoma that weren't available even 6 months ago.  

When I went to the Moffit Cancer Institute, Dr. Jeffrey Weber talked about several non B-raf options.  One involves removal and reinsertion of the cancer after treating the diseased cells.  Basically, it's a form of Stem Cell from what I understand but they don't call it that.

I don't know who your Oncologist is, but I can tell you that mine calls Dr. Weber for advice often and Dr. Weber always returns his calls promptly and is willing to look at anything he sends him.  He's a great resource and one of the most knowledgeable Melanoma Doctors in the country.  Get with your Dad's oncologist and let him know that Weber's got several new trials starting in the next month and some other options that he should discuss with him.  There's now multiple options for curing Melanoma that weren't available even 6 months ago.  

Thank you both… and yes Dave, those are really good odds for a melanoma drug!  Unfortunately he is BRAF negative.  I do 100% trust the team we are working with, they have been wonderful.  This must have been a slip when they were saying that, they were probably meaning to say that we'd be free from the disease for awhile so we could try to get the drugs kick in.  I'm staying up on my reading so I know when they slip, but all in all, they have been fantastic.

Good luck to both of you, I really hope they rid the world of this terrible disease!

Ashley

I agree with POW.  The only reason we did whole brain over Gamma Knife is to buy some extra time for the B-raf/MEK to kick in before any new spots pop up in the brain.  There is absolutely no guarantee that it will permanently kill all cancer in the brain.  The gamma knife is supposed to be a great approach to removal but my oncologists were nervous because the spots in my brain just popped up in the last 4 weeks so they were betting on more showing up in the near future.  

After 10 treatments, 5 more to go, I have noticed ZERO difference with memory, personality, pain, fatigue, or anything.  I actually feel great right now.  It's supposed to get worse after the last few treatments.  I should have some fatigue and hair loss.  

To get on the B-raf/MEK you have to be BRAF positive.  But, if your Dad is positive, they are telling me that there is a 76% rate of tumor shrinkage or disappearance, 20% rate of stabilization, and only 4% chance of no improvement.  Those are incredible odds for any Melanoma drug.

Good luck to you guys!  Stay positive.

Dave

Hi Dave,

I have a question for you with the whole brain radiation.  My dad has 2 mets on his brain and we were given the option of more of a focused cyber knife radiation, surgery or WBR.  They said if we wanted to never think about brain mets again WBR would be the way to go (after potential surgery on one of the bigger one).  They said though that some people experience that they were not as "sharp" as they once were.  Have you found this to be the case?  We were going to keep WBR in our back pocket for awhile because my Dad didn't like the sound of that but just wondering if you've experienced anything from the radiation that you've noticed.  Sounds like they are going to do surgery on him regardless, so one step at a time, but just wondering if we should consider WBR in the future.

Also, are you BRAF + or -? 

Thanks!

Ashley