Converting to hospice care due to brain mets

He has been seeing a melanoma specialist, but that doctor is currently out of the country, has been for a few weeks, and will be for another.  He did try interferon treatment immediately upon diagnosis, but I'm unsure why we're not trying ipi, pd-1, or the clinical trial for both right now.  My brain is a bit scrambled at the moment, but my guess is that he's excluded from the trial either by symptomatic brain mets (sleeping 22-23 hours a day) or because of the use of steroids during his last 15 months of BRAF+MEK treatment.  As for why we're not trying one or the other individually, I can only guess.  Yesterday he got another brain MRI and a full CT scan, then had an appointment with a neurologist who showed them that the melanoma is pervasive throughout the brain and in the spinal fluid.  That doctor was the one who said he had no viable treatment options or clinical trials, prescribed hospice care, and stated that he believed it would be over in less than a month.  My guess is that ipi or pd-1 treatments would likely be ineffective because the typical response time is significantly longer than his expected survival time, or as you said, too little too late.  It is unclear to me why alternate treatments weren't started in May when he had the two new tumors (throat and shoulder) removed, but I can't change the past.  We now have confirmed mets in liver, spleen, all vertebrae, spinal fluid and brain, and the ER told him last week they were pretty sure his persistent cough is due to lung mets.  They had another appointment scheduled with an oncologist at the end of yesterday to discuss what else is going on in his body (e.g. lung mets), but by that time my dad had been up and about for 5 hours and taken quite an emotional jolt as well, so when my parents got tired of waiting for the oncologist, they thought about what they'd already been told and went home.

Given that the doctor who stated that no further treatment would be effective was either a neurologist or a neuro oncologist, i.e. not a melanoma specialist, it seems possible that he is unaware of the efficacy of ipi and/or nivo.  I'm wondering if anyone is aware of an intrathecal delivery system for either/both drugs that might reduce the response time, perhaps in concert with whole brain radiation?

Given that the doctor who stated that no further treatment would be effective was either a neurologist or a neuro oncologist, i.e. not a melanoma specialist, it seems possible that he is unaware of the efficacy of ipi and/or nivo.  I'm wondering if anyone is aware of an intrathecal delivery system for either/both drugs that might reduce the response time, perhaps in concert with whole brain radiation?

Given that the doctor who stated that no further treatment would be effective was either a neurologist or a neuro oncologist, i.e. not a melanoma specialist, it seems possible that he is unaware of the efficacy of ipi and/or nivo.  I'm wondering if anyone is aware of an intrathecal delivery system for either/both drugs that might reduce the response time, perhaps in concert with whole brain radiation?

He has been seeing a melanoma specialist, but that doctor is currently out of the country, has been for a few weeks, and will be for another.  He did try interferon treatment immediately upon diagnosis, but I'm unsure why we're not trying ipi, pd-1, or the clinical trial for both right now.  My brain is a bit scrambled at the moment, but my guess is that he's excluded from the trial either by symptomatic brain mets (sleeping 22-23 hours a day) or because of the use of steroids during his last 15 months of BRAF+MEK treatment.  As for why we're not trying one or the other individually, I can only guess.  Yesterday he got another brain MRI and a full CT scan, then had an appointment with a neurologist who showed them that the melanoma is pervasive throughout the brain and in the spinal fluid.  That doctor was the one who said he had no viable treatment options or clinical trials, prescribed hospice care, and stated that he believed it would be over in less than a month.  My guess is that ipi or pd-1 treatments would likely be ineffective because the typical response time is significantly longer than his expected survival time, or as you said, too little too late.  It is unclear to me why alternate treatments weren't started in May when he had the two new tumors (throat and shoulder) removed, but I can't change the past.  We now have confirmed mets in liver, spleen, all vertebrae, spinal fluid and brain, and the ER told him last week they were pretty sure his persistent cough is due to lung mets.  They had another appointment scheduled with an oncologist at the end of yesterday to discuss what else is going on in his body (e.g. lung mets), but by that time my dad had been up and about for 5 hours and taken quite an emotional jolt as well, so when my parents got tired of waiting for the oncologist, they thought about what they'd already been told and went home.

He has been seeing a melanoma specialist, but that doctor is currently out of the country, has been for a few weeks, and will be for another.  He did try interferon treatment immediately upon diagnosis, but I'm unsure why we're not trying ipi, pd-1, or the clinical trial for both right now.  My brain is a bit scrambled at the moment, but my guess is that he's excluded from the trial either by symptomatic brain mets (sleeping 22-23 hours a day) or because of the use of steroids during his last 15 months of BRAF+MEK treatment.  As for why we're not trying one or the other individually, I can only guess.  Yesterday he got another brain MRI and a full CT scan, then had an appointment with a neurologist who showed them that the melanoma is pervasive throughout the brain and in the spinal fluid.  That doctor was the one who said he had no viable treatment options or clinical trials, prescribed hospice care, and stated that he believed it would be over in less than a month.  My guess is that ipi or pd-1 treatments would likely be ineffective because the typical response time is significantly longer than his expected survival time, or as you said, too little too late.  It is unclear to me why alternate treatments weren't started in May when he had the two new tumors (throat and shoulder) removed, but I can't change the past.  We now have confirmed mets in liver, spleen, all vertebrae, spinal fluid and brain, and the ER told him last week they were pretty sure his persistent cough is due to lung mets.  They had another appointment scheduled with an oncologist at the end of yesterday to discuss what else is going on in his body (e.g. lung mets), but by that time my dad had been up and about for 5 hours and taken quite an emotional jolt as well, so when my parents got tired of waiting for the oncologist, they thought about what they'd already been told and went home.

Thanks for your kind thoughts.  My dad's normal melanoma specialist was back in the office today after a few weeks out of country, and my folks went to see him armed with all my questions on extending his expected survival long enough to get compassionate use ipi+nivo, as well as a paper on whole brain radiation + ipi that had a fantastic outcome.  Basically the doctor said that he believes my dad is too weak to survive the side effects that would be triggered by measures as aggressive as they would need to be.  Additionally, even if he were capable of tolerating them, they would be more substantial than my dad is willing to endure (loss of memory, cognitive disfunction, etc) and would only result in further side effects from immunotherapy, which my dad expressed disintered in revisiting after his interferon treatments. 

In the end, the doctor said that sometimes bodies bounce back a bit on their own when a course of treatment (his recent braf+mek combo) is concluded.  If my dad gains weight over the next week without any active treatment, further options may be discussed, but this seems to me to likely just be an attempt at emotional comfort.  At nearly two weeks since LM diagnosis and a week since "less than four weeks" prognosis, right now all I can do is wonder why all we did in May when he developed new tumors in his throat and on his shoulder, despite ongoing braf+mek treatment, was surgically remove them and continue the clearly failing drug regimen. 

My parents seem to be coming to terms with this prognosis now, so its looking like the kindest thing I can do is probably to get on the same page and just support them in any way I can.

Thanks for your kind thoughts.  My dad's normal melanoma specialist was back in the office today after a few weeks out of country, and my folks went to see him armed with all my questions on extending his expected survival long enough to get compassionate use ipi+nivo, as well as a paper on whole brain radiation + ipi that had a fantastic outcome.  Basically the doctor said that he believes my dad is too weak to survive the side effects that would be triggered by measures as aggressive as they would need to be.  Additionally, even if he were capable of tolerating them, they would be more substantial than my dad is willing to endure (loss of memory, cognitive disfunction, etc) and would only result in further side effects from immunotherapy, which my dad expressed disintered in revisiting after his interferon treatments. 

In the end, the doctor said that sometimes bodies bounce back a bit on their own when a course of treatment (his recent braf+mek combo) is concluded.  If my dad gains weight over the next week without any active treatment, further options may be discussed, but this seems to me to likely just be an attempt at emotional comfort.  At nearly two weeks since LM diagnosis and a week since "less than four weeks" prognosis, right now all I can do is wonder why all we did in May when he developed new tumors in his throat and on his shoulder, despite ongoing braf+mek treatment, was surgically remove them and continue the clearly failing drug regimen. 

My parents seem to be coming to terms with this prognosis now, so its looking like the kindest thing I can do is probably to get on the same page and just support them in any way I can.

Thanks for your kind thoughts.  My dad's normal melanoma specialist was back in the office today after a few weeks out of country, and my folks went to see him armed with all my questions on extending his expected survival long enough to get compassionate use ipi+nivo, as well as a paper on whole brain radiation + ipi that had a fantastic outcome.  Basically the doctor said that he believes my dad is too weak to survive the side effects that would be triggered by measures as aggressive as they would need to be.  Additionally, even if he were capable of tolerating them, they would be more substantial than my dad is willing to endure (loss of memory, cognitive disfunction, etc) and would only result in further side effects from immunotherapy, which my dad expressed disintered in revisiting after his interferon treatments. 

In the end, the doctor said that sometimes bodies bounce back a bit on their own when a course of treatment (his recent braf+mek combo) is concluded.  If my dad gains weight over the next week without any active treatment, further options may be discussed, but this seems to me to likely just be an attempt at emotional comfort.  At nearly two weeks since LM diagnosis and a week since "less than four weeks" prognosis, right now all I can do is wonder why all we did in May when he developed new tumors in his throat and on his shoulder, despite ongoing braf+mek treatment, was surgically remove them and continue the clearly failing drug regimen. 

My parents seem to be coming to terms with this prognosis now, so its looking like the kindest thing I can do is probably to get on the same page and just support them in any way I can.