Stage IV melanoma with brain mets

I always recommend a second and even third opinion. We have done this before and after treatment and it has in all cases produced better end results.  Some people do not recognize that cancer affects both the patient and the family. In my humble opinion people must educate themselves about all options and they should include second opinions if not for them for the family which often must pick up the pieces when uneducated decisions are made that complicates everyone's lives and could have unintended results.

As an example, my Mom disregarded her symptoms for months and her cancer spread significantly including to the brain. She may well could have avoided brain mets entirely if she had acted sooner because we immediately looked into clinical trials and she was going to be in one with Keytruda. However, due to the delay and then the radiologists "overlooking" her brain mets by the time they were diagnosed her only options were: Mek/Taf combo and gamma knife radiation followed quickly by Yervoy. We were lucky we had a 3rd and 4th opinion on treatment. She was very fortunate to respond to the later. And more fortunate to not be mentally compromised with all the brain mets (28) before having to go on Keytruda, which has done an almost unbelievable job of "erasing" the evidence of the treated brain mets and the vast majority of the remaining tumors.

With that said, brain mets can appear to increase in size or remain the same for some time before decreasing in size. Bleeding may occur as could necrosis. Some of this is a wait and see issue to determine what the MRI shows. As an example, my Mom had one tumor that the doctors watched for some time because it increased in size, then decreased in size and then increased again. It is not uncommon for tumors to change size, but they finally decided that there was a reoccurrence and gamma knife radiation was not an option, but a craniotomy was.

I do question why opdivo is still being used though. My Mom had had Yervoy and gamma knife radiation and they could not give her Yervoy again because she had a severe case of colitis.  Once they determined that she needed a craniotomy they decided that she would need to move forward with Keytruda.  My understanding is that there are studies that suggest that Keytruda may "work on" the brain at the same time it works on the rest of the body and there may not be a delay.  So, has anyone discussed with your father inlaw moving to Keytruda and explained the pros and cons of it vs the current treatment? With progression to brain mets with opdivo I don't know if doctors recommend staying the course or switching to Keytruda….

If your father-inlaw is not seeing a melanoma specialist I would highly recommend one. They simply have more experience and a general oncologist does not have the experience necessary to draw upon.

Good luck.

I always recommend a second and even third opinion. We have done this before and after treatment and it has in all cases produced better end results.  Some people do not recognize that cancer affects both the patient and the family. In my humble opinion people must educate themselves about all options and they should include second opinions if not for them for the family which often must pick up the pieces when uneducated decisions are made that complicates everyone's lives and could have unintended results.

As an example, my Mom disregarded her symptoms for months and her cancer spread significantly including to the brain. She may well could have avoided brain mets entirely if she had acted sooner because we immediately looked into clinical trials and she was going to be in one with Keytruda. However, due to the delay and then the radiologists "overlooking" her brain mets by the time they were diagnosed her only options were: Mek/Taf combo and gamma knife radiation followed quickly by Yervoy. We were lucky we had a 3rd and 4th opinion on treatment. She was very fortunate to respond to the later. And more fortunate to not be mentally compromised with all the brain mets (28) before having to go on Keytruda, which has done an almost unbelievable job of "erasing" the evidence of the treated brain mets and the vast majority of the remaining tumors.

With that said, brain mets can appear to increase in size or remain the same for some time before decreasing in size. Bleeding may occur as could necrosis. Some of this is a wait and see issue to determine what the MRI shows. As an example, my Mom had one tumor that the doctors watched for some time because it increased in size, then decreased in size and then increased again. It is not uncommon for tumors to change size, but they finally decided that there was a reoccurrence and gamma knife radiation was not an option, but a craniotomy was.

I do question why opdivo is still being used though. My Mom had had Yervoy and gamma knife radiation and they could not give her Yervoy again because she had a severe case of colitis.  Once they determined that she needed a craniotomy they decided that she would need to move forward with Keytruda.  My understanding is that there are studies that suggest that Keytruda may "work on" the brain at the same time it works on the rest of the body and there may not be a delay.  So, has anyone discussed with your father inlaw moving to Keytruda and explained the pros and cons of it vs the current treatment? With progression to brain mets with opdivo I don't know if doctors recommend staying the course or switching to Keytruda….

If your father-inlaw is not seeing a melanoma specialist I would highly recommend one. They simply have more experience and a general oncologist does not have the experience necessary to draw upon.

Good luck.

I always recommend a second and even third opinion. We have done this before and after treatment and it has in all cases produced better end results.  Some people do not recognize that cancer affects both the patient and the family. In my humble opinion people must educate themselves about all options and they should include second opinions if not for them for the family which often must pick up the pieces when uneducated decisions are made that complicates everyone's lives and could have unintended results.

As an example, my Mom disregarded her symptoms for months and her cancer spread significantly including to the brain. She may well could have avoided brain mets entirely if she had acted sooner because we immediately looked into clinical trials and she was going to be in one with Keytruda. However, due to the delay and then the radiologists "overlooking" her brain mets by the time they were diagnosed her only options were: Mek/Taf combo and gamma knife radiation followed quickly by Yervoy. We were lucky we had a 3rd and 4th opinion on treatment. She was very fortunate to respond to the later. And more fortunate to not be mentally compromised with all the brain mets (28) before having to go on Keytruda, which has done an almost unbelievable job of "erasing" the evidence of the treated brain mets and the vast majority of the remaining tumors.

With that said, brain mets can appear to increase in size or remain the same for some time before decreasing in size. Bleeding may occur as could necrosis. Some of this is a wait and see issue to determine what the MRI shows. As an example, my Mom had one tumor that the doctors watched for some time because it increased in size, then decreased in size and then increased again. It is not uncommon for tumors to change size, but they finally decided that there was a reoccurrence and gamma knife radiation was not an option, but a craniotomy was.

I do question why opdivo is still being used though. My Mom had had Yervoy and gamma knife radiation and they could not give her Yervoy again because she had a severe case of colitis.  Once they determined that she needed a craniotomy they decided that she would need to move forward with Keytruda.  My understanding is that there are studies that suggest that Keytruda may "work on" the brain at the same time it works on the rest of the body and there may not be a delay.  So, has anyone discussed with your father inlaw moving to Keytruda and explained the pros and cons of it vs the current treatment? With progression to brain mets with opdivo I don't know if doctors recommend staying the course or switching to Keytruda….

If your father-inlaw is not seeing a melanoma specialist I would highly recommend one. They simply have more experience and a general oncologist does not have the experience necessary to draw upon.

Good luck.

I've learned that location is key to everything in the brain. Not that that's not true in other organs either. Some hospitals may have more advanced neurosurgery techniques than others though. I know at least one of mine was considered inoperable because it was so deep in. It got radiation. If it hadn't of responded to radiation, I don't know what the next step would have been. Maybe I would be hearing the same thing as your father-in-law is. I will say that I have found second opinions to be as useful when they agree with my doctor's recommendation (happened once), as well as when they disagree (also once). When they both agree, that strengthens and reassures me that what is being done is probably the best course.

I don't know of any specific trials that take brain mets but I haven't been keeping up on those. As someone who's just completed a clinical trial, however, they can be very hard on the patient as far as trying to get in. There's usually a "washout" phase where one have to discontinue any current treatment, usually for a month. Then there are strict and often narrow criteria to meet. If one does meet the criteria before the washout period, there is no guarantee that one's condition won't change by the end of the period. Also, especially with early phase trials, they are often stopped and started for various reasons which could delay treatment even after completing a washout. On the other hand, if one feels the current treatment is not working, one could end up deciding the best thing is to roll the dice and go for the trial. But it is usually not simply stopping one treatment and transferring to another. There may be roadblocks put in the way that wouldn't be run into otherwise.

There's always a possibility that progression in the larger 1cm tumor in the brain is "pseudo-progression", in other words coming from inflammation from an immune system response. But I really have no idea if that's even plausible, and I am not a doctor and it could very well be progression.  

What I've learned I want from an oncologist is to be a good odds-maker. WIth so many uncertainties, someone who can balance the odds of each part of all the different paths, and make a recommendation, and adjust those assessments as treatment is ongoing. To me that's where second opinions can help the most.

Good luck to your father-in-law and family in all this.

I've learned that location is key to everything in the brain. Not that that's not true in other organs either. Some hospitals may have more advanced neurosurgery techniques than others though. I know at least one of mine was considered inoperable because it was so deep in. It got radiation. If it hadn't of responded to radiation, I don't know what the next step would have been. Maybe I would be hearing the same thing as your father-in-law is. I will say that I have found second opinions to be as useful when they agree with my doctor's recommendation (happened once), as well as when they disagree (also once). When they both agree, that strengthens and reassures me that what is being done is probably the best course.

I don't know of any specific trials that take brain mets but I haven't been keeping up on those. As someone who's just completed a clinical trial, however, they can be very hard on the patient as far as trying to get in. There's usually a "washout" phase where one have to discontinue any current treatment, usually for a month. Then there are strict and often narrow criteria to meet. If one does meet the criteria before the washout period, there is no guarantee that one's condition won't change by the end of the period. Also, especially with early phase trials, they are often stopped and started for various reasons which could delay treatment even after completing a washout. On the other hand, if one feels the current treatment is not working, one could end up deciding the best thing is to roll the dice and go for the trial. But it is usually not simply stopping one treatment and transferring to another. There may be roadblocks put in the way that wouldn't be run into otherwise.

There's always a possibility that progression in the larger 1cm tumor in the brain is "pseudo-progression", in other words coming from inflammation from an immune system response. But I really have no idea if that's even plausible, and I am not a doctor and it could very well be progression.  

What I've learned I want from an oncologist is to be a good odds-maker. WIth so many uncertainties, someone who can balance the odds of each part of all the different paths, and make a recommendation, and adjust those assessments as treatment is ongoing. To me that's where second opinions can help the most.

Good luck to your father-in-law and family in all this.

I've learned that location is key to everything in the brain. Not that that's not true in other organs either. Some hospitals may have more advanced neurosurgery techniques than others though. I know at least one of mine was considered inoperable because it was so deep in. It got radiation. If it hadn't of responded to radiation, I don't know what the next step would have been. Maybe I would be hearing the same thing as your father-in-law is. I will say that I have found second opinions to be as useful when they agree with my doctor's recommendation (happened once), as well as when they disagree (also once). When they both agree, that strengthens and reassures me that what is being done is probably the best course.

I don't know of any specific trials that take brain mets but I haven't been keeping up on those. As someone who's just completed a clinical trial, however, they can be very hard on the patient as far as trying to get in. There's usually a "washout" phase where one have to discontinue any current treatment, usually for a month. Then there are strict and often narrow criteria to meet. If one does meet the criteria before the washout period, there is no guarantee that one's condition won't change by the end of the period. Also, especially with early phase trials, they are often stopped and started for various reasons which could delay treatment even after completing a washout. On the other hand, if one feels the current treatment is not working, one could end up deciding the best thing is to roll the dice and go for the trial. But it is usually not simply stopping one treatment and transferring to another. There may be roadblocks put in the way that wouldn't be run into otherwise.

There's always a possibility that progression in the larger 1cm tumor in the brain is "pseudo-progression", in other words coming from inflammation from an immune system response. But I really have no idea if that's even plausible, and I am not a doctor and it could very well be progression.  

What I've learned I want from an oncologist is to be a good odds-maker. WIth so many uncertainties, someone who can balance the odds of each part of all the different paths, and make a recommendation, and adjust those assessments as treatment is ongoing. To me that's where second opinions can help the most.

Good luck to your father-in-law and family in all this.

Here is a search at clinicaltrials.gov for condition=melanoma and title including "brain". It does pull up a number of trials, 21 of them.

https://clinicaltrials.gov/ct2/results?term=&recr=Open&cond=melanoma&titles=brain

Here is a search at clinicaltrials.gov for condition=melanoma and title including "brain". It does pull up a number of trials, 21 of them.

https://clinicaltrials.gov/ct2/results?term=&recr=Open&cond=melanoma&titles=brain

Here is a search at clinicaltrials.gov for condition=melanoma and title including "brain". It does pull up a number of trials, 21 of them.

https://clinicaltrials.gov/ct2/results?term=&recr=Open&cond=melanoma&titles=brain

Hi there – 

I am wondering why the resistance to second opinions? It could be generational (my dad and father-in-law had similar attitudes), but melanoma is a tough fight and being in the hands of a top specialist is paramount….

Have you helped with the research of finding the best neurosurgeon his insurance affords? Urged by my sister, I switched my neurosurgeon when I was unhappy with the treatment plan my first was recommending. My second opinion led me to a much less invasive approach and I now have every confidence in my neurosurgeon. Good thing as I'm going in for my second craniotomy next week.

Praying your FIL will be open to listening to other opinions soon!

Hi there – 

I am wondering why the resistance to second opinions? It could be generational (my dad and father-in-law had similar attitudes), but melanoma is a tough fight and being in the hands of a top specialist is paramount….

Have you helped with the research of finding the best neurosurgeon his insurance affords? Urged by my sister, I switched my neurosurgeon when I was unhappy with the treatment plan my first was recommending. My second opinion led me to a much less invasive approach and I now have every confidence in my neurosurgeon. Good thing as I'm going in for my second craniotomy next week.

Praying your FIL will be open to listening to other opinions soon!

Hi there – 

I am wondering why the resistance to second opinions? It could be generational (my dad and father-in-law had similar attitudes), but melanoma is a tough fight and being in the hands of a top specialist is paramount….

Have you helped with the research of finding the best neurosurgeon his insurance affords? Urged by my sister, I switched my neurosurgeon when I was unhappy with the treatment plan my first was recommending. My second opinion led me to a much less invasive approach and I now have every confidence in my neurosurgeon. Good thing as I'm going in for my second craniotomy next week.

Praying your FIL will be open to listening to other opinions soon!

I don't know if this well help, but thought I'd share as a Stage 4 Melanoma patient constantly battling brain mets. My understanding is that Opdivo and Keytruda are very similar and both are supposed to cross the blood/brain barrier (unlike Yervoy.) I have the BRAF marker, so Keytruda was what they went with as I had not been put on BRAF inhibitors. (The inhibitors are required before Opdivo is even an option.) When we combined Keytruda with 5 days of radiation to a large body tumor, that tumor and the other tumors were gone in less than 60 days and the brain mets greatly diminished. (THC was also used, detailed below.) My largest was up to 12cm and down to 2cm within 3 months. They grow very fast, but seem to take much longer to show regression.

I've also had a full craniotomy (I had 2 grapefruit-size brain tumors) and three rounds of gamma knife to get the remainder of the tumors.

Unfortunately, we're now finding new mets in the ventricles and spinal fluid is coming up positive for malignant cells. Radiation does not treat these. In 3 months, they grew from 2cm to 8cm. Now I'm experiencing serious neurological symptoms and headaches. MRI of the spine shows no tumors, yet. As a result, now we're moving to BRAF and MEK inhibitors in combination. It sounds like, if he's on Opdivo, he must not be BRAF positive. And if they don't know, they need to find out! (it's a lab test on a tumor. They tested my brain tumors during the craniotomy.)

One other thing they talk about, should the BRAF/MEK inhibitors not work, is sending me to the MD Anderson clinic in Texas for CAR-T cell therapy. My primary oncologist has been on the phone with them to arrange everything in advance, should we need to exercise this option. I have no idea how I'd pay for it and arrange transport from California, but I know the many foundations out there can assist with this. They might at least look into this if there are no further drugs that would help. Also, just more reason to get more opinions from other oncologists.

As others have said, a second and third opinion can be huge. I didn't want to go see another doctor at first, but when I did I was completely furious at and over my first oncologist. My second and third opinions were both furious that the first doctor did not go with inhibitors to begin with. My first oncologist was trying to push Opdivo through and force my insurance to approve it. I read that Keytruda was what I needed with the BRAF marker, and I had to demand Keytruda. I was started on Yervoy when this all started, had zero response to it, but had at least 12 new tumors form while on Yervoy and I was certain death was coming last November. My point is, sometimes an oncologist knows too little about melanoma to effectively treat it – and this is a life, not replaceable, so those second and third opinions are valuable beyond money.

And I'll throw it out there, but I know for many it is not an option or they won't even consider it. Concentrated THC (marijuana, but clean, sterile and liquid form) four (4) hours prior to radiation in combination with the Keytruda, I swear, is to thank for the massive tumor death. After the radiation, oncologists were amazed by the results, falling to the floor screaming "melanoma DOES NOT respond like this." If anyone goes this route, I highly recommend a cannabis expert who is familiar with oncology. I have an oncology doctor prescribing the exact dosing of THC (kill tumors), CBD (stop spread), and THCa (kill brain mets) that I use. Even when I talk to random strangers, half of them first ask – "are you taking CBD!?" when they hear melanoma. Further, the cannabis doctor makes sure we don't interfere with other drugs. I won't go too much into details, but to say that It's expensive and when I was at the brink of death, it brought me back. I know it's making a difference.

I don't know if this well help, but thought I'd share as a Stage 4 Melanoma patient constantly battling brain mets. My understanding is that Opdivo and Keytruda are very similar and both are supposed to cross the blood/brain barrier (unlike Yervoy.) I have the BRAF marker, so Keytruda was what they went with as I had not been put on BRAF inhibitors. (The inhibitors are required before Opdivo is even an option.) When we combined Keytruda with 5 days of radiation to a large body tumor, that tumor and the other tumors were gone in less than 60 days and the brain mets greatly diminished. (THC was also used, detailed below.) My largest was up to 12cm and down to 2cm within 3 months. They grow very fast, but seem to take much longer to show regression.

I've also had a full craniotomy (I had 2 grapefruit-size brain tumors) and three rounds of gamma knife to get the remainder of the tumors.

Unfortunately, we're now finding new mets in the ventricles and spinal fluid is coming up positive for malignant cells. Radiation does not treat these. In 3 months, they grew from 2cm to 8cm. Now I'm experiencing serious neurological symptoms and headaches. MRI of the spine shows no tumors, yet. As a result, now we're moving to BRAF and MEK inhibitors in combination. It sounds like, if he's on Opdivo, he must not be BRAF positive. And if they don't know, they need to find out! (it's a lab test on a tumor. They tested my brain tumors during the craniotomy.)

One other thing they talk about, should the BRAF/MEK inhibitors not work, is sending me to the MD Anderson clinic in Texas for CAR-T cell therapy. My primary oncologist has been on the phone with them to arrange everything in advance, should we need to exercise this option. I have no idea how I'd pay for it and arrange transport from California, but I know the many foundations out there can assist with this. They might at least look into this if there are no further drugs that would help. Also, just more reason to get more opinions from other oncologists.

As others have said, a second and third opinion can be huge. I didn't want to go see another doctor at first, but when I did I was completely furious at and over my first oncologist. My second and third opinions were both furious that the first doctor did not go with inhibitors to begin with. My first oncologist was trying to push Opdivo through and force my insurance to approve it. I read that Keytruda was what I needed with the BRAF marker, and I had to demand Keytruda. I was started on Yervoy when this all started, had zero response to it, but had at least 12 new tumors form while on Yervoy and I was certain death was coming last November. My point is, sometimes an oncologist knows too little about melanoma to effectively treat it – and this is a life, not replaceable, so those second and third opinions are valuable beyond money.

And I'll throw it out there, but I know for many it is not an option or they won't even consider it. Concentrated THC (marijuana, but clean, sterile and liquid form) four (4) hours prior to radiation in combination with the Keytruda, I swear, is to thank for the massive tumor death. After the radiation, oncologists were amazed by the results, falling to the floor screaming "melanoma DOES NOT respond like this." If anyone goes this route, I highly recommend a cannabis expert who is familiar with oncology. I have an oncology doctor prescribing the exact dosing of THC (kill tumors), CBD (stop spread), and THCa (kill brain mets) that I use. Even when I talk to random strangers, half of them first ask – "are you taking CBD!?" when they hear melanoma. Further, the cannabis doctor makes sure we don't interfere with other drugs. I won't go too much into details, but to say that It's expensive and when I was at the brink of death, it brought me back. I know it's making a difference.

I don't know if this well help, but thought I'd share as a Stage 4 Melanoma patient constantly battling brain mets. My understanding is that Opdivo and Keytruda are very similar and both are supposed to cross the blood/brain barrier (unlike Yervoy.) I have the BRAF marker, so Keytruda was what they went with as I had not been put on BRAF inhibitors. (The inhibitors are required before Opdivo is even an option.) When we combined Keytruda with 5 days of radiation to a large body tumor, that tumor and the other tumors were gone in less than 60 days and the brain mets greatly diminished. (THC was also used, detailed below.) My largest was up to 12cm and down to 2cm within 3 months. They grow very fast, but seem to take much longer to show regression.

I've also had a full craniotomy (I had 2 grapefruit-size brain tumors) and three rounds of gamma knife to get the remainder of the tumors.

Unfortunately, we're now finding new mets in the ventricles and spinal fluid is coming up positive for malignant cells. Radiation does not treat these. In 3 months, they grew from 2cm to 8cm. Now I'm experiencing serious neurological symptoms and headaches. MRI of the spine shows no tumors, yet. As a result, now we're moving to BRAF and MEK inhibitors in combination. It sounds like, if he's on Opdivo, he must not be BRAF positive. And if they don't know, they need to find out! (it's a lab test on a tumor. They tested my brain tumors during the craniotomy.)

One other thing they talk about, should the BRAF/MEK inhibitors not work, is sending me to the MD Anderson clinic in Texas for CAR-T cell therapy. My primary oncologist has been on the phone with them to arrange everything in advance, should we need to exercise this option. I have no idea how I'd pay for it and arrange transport from California, but I know the many foundations out there can assist with this. They might at least look into this if there are no further drugs that would help. Also, just more reason to get more opinions from other oncologists.

As others have said, a second and third opinion can be huge. I didn't want to go see another doctor at first, but when I did I was completely furious at and over my first oncologist. My second and third opinions were both furious that the first doctor did not go with inhibitors to begin with. My first oncologist was trying to push Opdivo through and force my insurance to approve it. I read that Keytruda was what I needed with the BRAF marker, and I had to demand Keytruda. I was started on Yervoy when this all started, had zero response to it, but had at least 12 new tumors form while on Yervoy and I was certain death was coming last November. My point is, sometimes an oncologist knows too little about melanoma to effectively treat it – and this is a life, not replaceable, so those second and third opinions are valuable beyond money.

And I'll throw it out there, but I know for many it is not an option or they won't even consider it. Concentrated THC (marijuana, but clean, sterile and liquid form) four (4) hours prior to radiation in combination with the Keytruda, I swear, is to thank for the massive tumor death. After the radiation, oncologists were amazed by the results, falling to the floor screaming "melanoma DOES NOT respond like this." If anyone goes this route, I highly recommend a cannabis expert who is familiar with oncology. I have an oncology doctor prescribing the exact dosing of THC (kill tumors), CBD (stop spread), and THCa (kill brain mets) that I use. Even when I talk to random strangers, half of them first ask – "are you taking CBD!?" when they hear melanoma. Further, the cannabis doctor makes sure we don't interfere with other drugs. I won't go too much into details, but to say that It's expensive and when I was at the brink of death, it brought me back. I know it's making a difference.