Seizures?

I had read and responded recently to your post on MIF.  I am sorry to hear that it has turned out to be what I suggested.  To possibly make lemonade out of what are now unquestionably lemons, if some kind of radiation is used to eliminate the brain tumors, there may be a symbiotic effect between that radiation and the anti-PD1 a combination that will help fight the cancer throughout the body by giving more of a boost to the immune system.  I don't think the research on that is definitive,  but there is certainly research that points in that direction.  I had had two infusions of ipi and was on the eve of my third when my two brain metastases were radiated.  I have had only one new occurrence of melanoma since and that may very well have been present already when  I received the radiation.  It's now almost two years since I had the last of my melanoma, a subcutaneous tumor, removed.  I very much hope that things move in a very positive direction for your wife.

Frank

If it would be of any help, feel free to contact me by email.

I had read and responded recently to your post on MIF.  I am sorry to hear that it has turned out to be what I suggested.  To possibly make lemonade out of what are now unquestionably lemons, if some kind of radiation is used to eliminate the brain tumors, there may be a symbiotic effect between that radiation and the anti-PD1 a combination that will help fight the cancer throughout the body by giving more of a boost to the immune system.  I don't think the research on that is definitive,  but there is certainly research that points in that direction.  I had had two infusions of ipi and was on the eve of my third when my two brain metastases were radiated.  I have had only one new occurrence of melanoma since and that may very well have been present already when  I received the radiation.  It's now almost two years since I had the last of my melanoma, a subcutaneous tumor, removed.  I very much hope that things move in a very positive direction for your wife.

Frank

If it would be of any help, feel free to contact me by email.

I had read and responded recently to your post on MIF.  I am sorry to hear that it has turned out to be what I suggested.  To possibly make lemonade out of what are now unquestionably lemons, if some kind of radiation is used to eliminate the brain tumors, there may be a symbiotic effect between that radiation and the anti-PD1 a combination that will help fight the cancer throughout the body by giving more of a boost to the immune system.  I don't think the research on that is definitive,  but there is certainly research that points in that direction.  I had had two infusions of ipi and was on the eve of my third when my two brain metastases were radiated.  I have had only one new occurrence of melanoma since and that may very well have been present already when  I received the radiation.  It's now almost two years since I had the last of my melanoma, a subcutaneous tumor, removed.  I very much hope that things move in a very positive direction for your wife.

Frank

If it would be of any help, feel free to contact me by email.

Rick,

You never know which forum I am going to show up on.

  It might be worth your while to watch the webinar on the other site about brain radiation, specifically on SRS (gamma knife).  It discusses the SRS procedure being used on considerably more sites than your wife would need.  There may be other reasons for adopting whole brain radiation, but the gamma knife procedure can be used, all other things being equal, on many sites.  It may depend on specific cancer center policies of a limit on individual tumors to be radiated.  So seeking out a second opinion from another center might be something to be done before deciding on whole brain radiation.

 I have known people for whom whole brain radiation has been very successful and has not caused unfortunate side effects, but these can happen.  I am sure for some people there is no real option.  For others there is, and figuring that out for your wife will be a joint project for the two of you and the "experts," who may have varying opinions.  Good luck on your vital research.

Frank

Rick,

You never know which forum I am going to show up on.

  It might be worth your while to watch the webinar on the other site about brain radiation, specifically on SRS (gamma knife).  It discusses the SRS procedure being used on considerably more sites than your wife would need.  There may be other reasons for adopting whole brain radiation, but the gamma knife procedure can be used, all other things being equal, on many sites.  It may depend on specific cancer center policies of a limit on individual tumors to be radiated.  So seeking out a second opinion from another center might be something to be done before deciding on whole brain radiation.

 I have known people for whom whole brain radiation has been very successful and has not caused unfortunate side effects, but these can happen.  I am sure for some people there is no real option.  For others there is, and figuring that out for your wife will be a joint project for the two of you and the "experts," who may have varying opinions.  Good luck on your vital research.

Frank

Rick,

You never know which forum I am going to show up on.

  It might be worth your while to watch the webinar on the other site about brain radiation, specifically on SRS (gamma knife).  It discusses the SRS procedure being used on considerably more sites than your wife would need.  There may be other reasons for adopting whole brain radiation, but the gamma knife procedure can be used, all other things being equal, on many sites.  It may depend on specific cancer center policies of a limit on individual tumors to be radiated.  So seeking out a second opinion from another center might be something to be done before deciding on whole brain radiation.

 I have known people for whom whole brain radiation has been very successful and has not caused unfortunate side effects, but these can happen.  I am sure for some people there is no real option.  For others there is, and figuring that out for your wife will be a joint project for the two of you and the "experts," who may have varying opinions.  Good luck on your vital research.

Frank

Hey Risk,

At first patients were not (in theory) admitted to either arm (resected arm vs nonresected) of my nivo trial with untreated brain mets.  I had had one met treated with SRS previous to admission.  However, at the time of trial admission another brain met was showing up on MRI.  After discussion with neuro peeps, Weber allowed me to join because it was still "minimal disease" (3-4mm) and radiologists "could not definitively say FOR SURE, that it was a met".  Another lady's scans had been mis-read, not noting what was probably meningeal disease and she got in as well. 

In my NED arm, 10 of the 33 of us had prior brain mets.  9 of those had prior radiation as part of eradication.  Here's what the report said:  "Brain metastasis subgroup:  10 patients with resected CNS disease were enrolled.  3 in cohort 1, 2 in cohort 2, and 6 in cohort 3.  Only 2 of these 10 patients have relapsed after median follow up time of 22.5 months, both were in cohort 1.  The first patient completed all doses of study drugs and developed a new solitary lung met that was resected after 47 months on protocol; she again has no clinical evidence of disease.  The second was diagnosed with recurrent CNS disease after her first treatment with study drugs and expired 3 weeks from start of protocol from CNS hemorrhage."  So, the lady with CNS disease expired in 3 weeks.  My tumor disappeared from the MRI after the first 3 months and has not returned.  So far…NONE of us have had any additional CNS lesions.  Here is the report from my NED arm:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/cest-moi-results-from-33-raties-in-my.html 

Here is the best I've been able to put together from my sister, nonresected arm as well as the fact that they finally DID accept some patients with known, currently active brain mets….other than below….I have no additional results on that particular group:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/03/9-months-after-nivolumab-trialstats-fu.html

The important points for you are these:

In the Stage IV metastatic melanoma, NON-resected arm:

• In a previous study with Nivo, 107 patients were treated every 2 weeks for 2 years with a median survival of 16.8 months.
• In THIS arm of the Moffitt study, 105 patients have been treated in the manner I was, getting Nivo every 2 weeks for 6 months, then every 3 months for 2 additional years.  The median survival has been 16.7 months.  
• So…survival was equivalent with less med, fewer trips to the doc, and with sicker patients (ocular mel and a few others were allowed that were not in the first study) in the Moffitt trial.
• Thus far, the Kaplan-Meier curve at 2 years is hanging at about 20%, but folks at Moffitt feel it will settle out around 25%.

Additional Cohort 6 added:

• How this cohort is defined specifically, how many have been enrolled in total, how many may still be enrolled, I do not know, however:
• 5 patients in this cohort were admitted with brain mets.
• 4 were treated (I presume by radiation…though not certain)
• BUT…1 experienced a COMPLETE RESPONSE with just Nivo!!!!!  (Awesome, right???!!)

In regard to WBR vs SRS:  Obviously you and your wife have to do what you think is best under your current circumstance no matter what anybody thinks.  You have to do what is right for you.  11 brain mets are a significantly difficult situation.  I would try to get a second radiology onc opinion if possible.  The other thought re that topic, is that sometimes the angle of SRS required to reach all mets at once would cause significant passage through healthy tissue, but by dividing the mets into 2 or 3 groupings for treatment can decrease that problem.  While you are correct in that many folks did once hold with the notion that WBR would prevent the healthy brain tissue from additional brain met development….that has not really proven out.  Here is some data. 

http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045%2809%2970263-3/fulltext

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/overview-of-treatments-for-melanoma.html

Specifically this, from the prior link: 

Radiotherapy:
Surgical treatment alone is not sufficient for prolonging survival.  Historically, whole brain  radiotherapy (WBRT) has been used to augment surgical resection….  However, SRS is the treatment of choice for patients who are not surgical candidates in an effort to "save the brain."  Melanomas are less sensitive to RT than, for example, lymphomas are, so the efficacy of WBRT is lower. Moreover, the long term cognitive "costs" are high.  Focused RT minimizes the neurocognitive deficits.  Hence, whenever possible, WBRT should be delayed or avoided if other treatment options are available.  The advent of effective systemic treatments (ipi, vermurafenib) to treat MBMs may further change the cost-benefit ratio in favor of SRS.  A new paradigm might include SRS to provide local control followed by systemic therapy to treat and prevent "micro"-brain mets.

I don't know if any of that helps, or just makes things more confusing.  Think out your options.  Then go with what the two of you think best.  Hang in there.  I will be thinking of you both and wishing you my best.  Celeste

Hey Risk,

At first patients were not (in theory) admitted to either arm (resected arm vs nonresected) of my nivo trial with untreated brain mets.  I had had one met treated with SRS previous to admission.  However, at the time of trial admission another brain met was showing up on MRI.  After discussion with neuro peeps, Weber allowed me to join because it was still "minimal disease" (3-4mm) and radiologists "could not definitively say FOR SURE, that it was a met".  Another lady's scans had been mis-read, not noting what was probably meningeal disease and she got in as well. 

In my NED arm, 10 of the 33 of us had prior brain mets.  9 of those had prior radiation as part of eradication.  Here's what the report said:  "Brain metastasis subgroup:  10 patients with resected CNS disease were enrolled.  3 in cohort 1, 2 in cohort 2, and 6 in cohort 3.  Only 2 of these 10 patients have relapsed after median follow up time of 22.5 months, both were in cohort 1.  The first patient completed all doses of study drugs and developed a new solitary lung met that was resected after 47 months on protocol; she again has no clinical evidence of disease.  The second was diagnosed with recurrent CNS disease after her first treatment with study drugs and expired 3 weeks from start of protocol from CNS hemorrhage."  So, the lady with CNS disease expired in 3 weeks.  My tumor disappeared from the MRI after the first 3 months and has not returned.  So far…NONE of us have had any additional CNS lesions.  Here is the report from my NED arm:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/cest-moi-results-from-33-raties-in-my.html 

Here is the best I've been able to put together from my sister, nonresected arm as well as the fact that they finally DID accept some patients with known, currently active brain mets….other than below….I have no additional results on that particular group:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/03/9-months-after-nivolumab-trialstats-fu.html

The important points for you are these:

In the Stage IV metastatic melanoma, NON-resected arm:

• In a previous study with Nivo, 107 patients were treated every 2 weeks for 2 years with a median survival of 16.8 months.
• In THIS arm of the Moffitt study, 105 patients have been treated in the manner I was, getting Nivo every 2 weeks for 6 months, then every 3 months for 2 additional years.  The median survival has been 16.7 months.  
• So…survival was equivalent with less med, fewer trips to the doc, and with sicker patients (ocular mel and a few others were allowed that were not in the first study) in the Moffitt trial.
• Thus far, the Kaplan-Meier curve at 2 years is hanging at about 20%, but folks at Moffitt feel it will settle out around 25%.

Additional Cohort 6 added:

• How this cohort is defined specifically, how many have been enrolled in total, how many may still be enrolled, I do not know, however:
• 5 patients in this cohort were admitted with brain mets.
• 4 were treated (I presume by radiation…though not certain)
• BUT…1 experienced a COMPLETE RESPONSE with just Nivo!!!!!  (Awesome, right???!!)

In regard to WBR vs SRS:  Obviously you and your wife have to do what you think is best under your current circumstance no matter what anybody thinks.  You have to do what is right for you.  11 brain mets are a significantly difficult situation.  I would try to get a second radiology onc opinion if possible.  The other thought re that topic, is that sometimes the angle of SRS required to reach all mets at once would cause significant passage through healthy tissue, but by dividing the mets into 2 or 3 groupings for treatment can decrease that problem.  While you are correct in that many folks did once hold with the notion that WBR would prevent the healthy brain tissue from additional brain met development….that has not really proven out.  Here is some data. 

http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045%2809%2970263-3/fulltext

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/overview-of-treatments-for-melanoma.html

Specifically this, from the prior link: 

Radiotherapy:
Surgical treatment alone is not sufficient for prolonging survival.  Historically, whole brain  radiotherapy (WBRT) has been used to augment surgical resection….  However, SRS is the treatment of choice for patients who are not surgical candidates in an effort to "save the brain."  Melanomas are less sensitive to RT than, for example, lymphomas are, so the efficacy of WBRT is lower. Moreover, the long term cognitive "costs" are high.  Focused RT minimizes the neurocognitive deficits.  Hence, whenever possible, WBRT should be delayed or avoided if other treatment options are available.  The advent of effective systemic treatments (ipi, vermurafenib) to treat MBMs may further change the cost-benefit ratio in favor of SRS.  A new paradigm might include SRS to provide local control followed by systemic therapy to treat and prevent "micro"-brain mets.

I don't know if any of that helps, or just makes things more confusing.  Think out your options.  Then go with what the two of you think best.  Hang in there.  I will be thinking of you both and wishing you my best.  Celeste

Hey Risk,

At first patients were not (in theory) admitted to either arm (resected arm vs nonresected) of my nivo trial with untreated brain mets.  I had had one met treated with SRS previous to admission.  However, at the time of trial admission another brain met was showing up on MRI.  After discussion with neuro peeps, Weber allowed me to join because it was still "minimal disease" (3-4mm) and radiologists "could not definitively say FOR SURE, that it was a met".  Another lady's scans had been mis-read, not noting what was probably meningeal disease and she got in as well. 

In my NED arm, 10 of the 33 of us had prior brain mets.  9 of those had prior radiation as part of eradication.  Here's what the report said:  "Brain metastasis subgroup:  10 patients with resected CNS disease were enrolled.  3 in cohort 1, 2 in cohort 2, and 6 in cohort 3.  Only 2 of these 10 patients have relapsed after median follow up time of 22.5 months, both were in cohort 1.  The first patient completed all doses of study drugs and developed a new solitary lung met that was resected after 47 months on protocol; she again has no clinical evidence of disease.  The second was diagnosed with recurrent CNS disease after her first treatment with study drugs and expired 3 weeks from start of protocol from CNS hemorrhage."  So, the lady with CNS disease expired in 3 weeks.  My tumor disappeared from the MRI after the first 3 months and has not returned.  So far…NONE of us have had any additional CNS lesions.  Here is the report from my NED arm:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/cest-moi-results-from-33-raties-in-my.html 

Here is the best I've been able to put together from my sister, nonresected arm as well as the fact that they finally DID accept some patients with known, currently active brain mets….other than below….I have no additional results on that particular group:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/03/9-months-after-nivolumab-trialstats-fu.html

The important points for you are these:

In the Stage IV metastatic melanoma, NON-resected arm:

• In a previous study with Nivo, 107 patients were treated every 2 weeks for 2 years with a median survival of 16.8 months.
• In THIS arm of the Moffitt study, 105 patients have been treated in the manner I was, getting Nivo every 2 weeks for 6 months, then every 3 months for 2 additional years.  The median survival has been 16.7 months.  
• So…survival was equivalent with less med, fewer trips to the doc, and with sicker patients (ocular mel and a few others were allowed that were not in the first study) in the Moffitt trial.
• Thus far, the Kaplan-Meier curve at 2 years is hanging at about 20%, but folks at Moffitt feel it will settle out around 25%.

Additional Cohort 6 added:

• How this cohort is defined specifically, how many have been enrolled in total, how many may still be enrolled, I do not know, however:
• 5 patients in this cohort were admitted with brain mets.
• 4 were treated (I presume by radiation…though not certain)
• BUT…1 experienced a COMPLETE RESPONSE with just Nivo!!!!!  (Awesome, right???!!)

In regard to WBR vs SRS:  Obviously you and your wife have to do what you think is best under your current circumstance no matter what anybody thinks.  You have to do what is right for you.  11 brain mets are a significantly difficult situation.  I would try to get a second radiology onc opinion if possible.  The other thought re that topic, is that sometimes the angle of SRS required to reach all mets at once would cause significant passage through healthy tissue, but by dividing the mets into 2 or 3 groupings for treatment can decrease that problem.  While you are correct in that many folks did once hold with the notion that WBR would prevent the healthy brain tissue from additional brain met development….that has not really proven out.  Here is some data. 

http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045%2809%2970263-3/fulltext

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/overview-of-treatments-for-melanoma.html

Specifically this, from the prior link: 

Radiotherapy:
Surgical treatment alone is not sufficient for prolonging survival.  Historically, whole brain  radiotherapy (WBRT) has been used to augment surgical resection….  However, SRS is the treatment of choice for patients who are not surgical candidates in an effort to "save the brain."  Melanomas are less sensitive to RT than, for example, lymphomas are, so the efficacy of WBRT is lower. Moreover, the long term cognitive "costs" are high.  Focused RT minimizes the neurocognitive deficits.  Hence, whenever possible, WBRT should be delayed or avoided if other treatment options are available.  The advent of effective systemic treatments (ipi, vermurafenib) to treat MBMs may further change the cost-benefit ratio in favor of SRS.  A new paradigm might include SRS to provide local control followed by systemic therapy to treat and prevent "micro"-brain mets.

I don't know if any of that helps, or just makes things more confusing.  Think out your options.  Then go with what the two of you think best.  Hang in there.  I will be thinking of you both and wishing you my best.  Celeste

PS…if you put 'brain mets' in the search bubble to the top left of my blog…you can find many additional artcles that review various treatments if you are interested.  Yours, c

PS…if you put 'brain mets' in the search bubble to the top left of my blog…you can find many additional artcles that review various treatments if you are interested.  Yours, c

PS…if you put 'brain mets' in the search bubble to the top left of my blog…you can find many additional artcles that review various treatments if you are interested.  Yours, c

A super webinar on brain mets and radiation is at:  http://melanomainternational.org/webinar/2012/01/radiation-treatment-in-brain-metastases

Whether radiation and other agents work together is still an unknown but worth a try.

A super webinar on brain mets and radiation is at:  http://melanomainternational.org/webinar/2012/01/radiation-treatment-in-brain-metastases

Whether radiation and other agents work together is still an unknown but worth a try.

A super webinar on brain mets and radiation is at:  http://melanomainternational.org/webinar/2012/01/radiation-treatment-in-brain-metastases

Whether radiation and other agents work together is still an unknown but worth a try.

Rick, one of the guidelines here is for us to post from our own experiences, and not to offer medical advice, per se. Information and background for sure. That is a tricky balance. Your wife's doctors are truly the ones close to your case, and with a body of medical expertise we don't have. In my own case my doctors were able to do SRS. That for sure was my preference too, at least given the my particular set of brain mets, twice. In a different situation, tbough, I might have needed to decide or accept differently. I learned that location is a big factor in what the docs can do. If there's doubt, a second opinion could be useful. I skipped doing that the second time around because I din't have any doubts. God luck with your wife's treatment plan whichever way you go. -Kyle

Rick, one of the guidelines here is for us to post from our own experiences, and not to offer medical advice, per se. Information and background for sure. That is a tricky balance. Your wife's doctors are truly the ones close to your case, and with a body of medical expertise we don't have. In my own case my doctors were able to do SRS. That for sure was my preference too, at least given the my particular set of brain mets, twice. In a different situation, tbough, I might have needed to decide or accept differently. I learned that location is a big factor in what the docs can do. If there's doubt, a second opinion could be useful. I skipped doing that the second time around because I din't have any doubts. God luck with your wife's treatment plan whichever way you go. -Kyle

Rick, one of the guidelines here is for us to post from our own experiences, and not to offer medical advice, per se. Information and background for sure. That is a tricky balance. Your wife's doctors are truly the ones close to your case, and with a body of medical expertise we don't have. In my own case my doctors were able to do SRS. That for sure was my preference too, at least given the my particular set of brain mets, twice. In a different situation, tbough, I might have needed to decide or accept differently. I learned that location is a big factor in what the docs can do. If there's doubt, a second opinion could be useful. I skipped doing that the second time around because I din't have any doubts. God luck with your wife's treatment plan whichever way you go. -Kyle

I'm glad you've settled on a plan!  Sometimes that is the hardest part.  Will hold you both in my heart on Thursday.  Hang in there.  Go for it and don't look back.  Yours, c

I'm glad you've settled on a plan!  Sometimes that is the hardest part.  Will hold you both in my heart on Thursday.  Hang in there.  Go for it and don't look back.  Yours, c

I'm glad you've settled on a plan!  Sometimes that is the hardest part.  Will hold you both in my heart on Thursday.  Hang in there.  Go for it and don't look back.  Yours, c