Advice on End Stage Melanoma

My dad has 13 tumors in the brain and did whole brain radiation. He has also had 3 seizures which has affected his speech and physically as well. Whole brain radiation is not preferable, actually I would have had them do SRS instead, but that was not an option where he lives. I think at this point you need to find something that will slow the growth down to give immunotherapy a chance to work. Since my dad had the whole brain radiation back in July he ended up getting 5 infusions of immunotherapy. His tumours have actually shrunk. Even before immunotherapy things were stable in the brain after radiation.

Someone else will give better advice but at this point maybe whole brain radiation would not be out of the question.

Amnie

My dad has 13 tumors in the brain and did whole brain radiation. He has also had 3 seizures which has affected his speech and physically as well. Whole brain radiation is not preferable, actually I would have had them do SRS instead, but that was not an option where he lives. I think at this point you need to find something that will slow the growth down to give immunotherapy a chance to work. Since my dad had the whole brain radiation back in July he ended up getting 5 infusions of immunotherapy. His tumours have actually shrunk. Even before immunotherapy things were stable in the brain after radiation.

Someone else will give better advice but at this point maybe whole brain radiation would not be out of the question.

Amnie

My dad has 13 tumors in the brain and did whole brain radiation. He has also had 3 seizures which has affected his speech and physically as well. Whole brain radiation is not preferable, actually I would have had them do SRS instead, but that was not an option where he lives. I think at this point you need to find something that will slow the growth down to give immunotherapy a chance to work. Since my dad had the whole brain radiation back in July he ended up getting 5 infusions of immunotherapy. His tumours have actually shrunk. Even before immunotherapy things were stable in the brain after radiation.

Someone else will give better advice but at this point maybe whole brain radiation would not be out of the question.

Amnie

I am sorry for what you and your father are dealing with.  Melanoma researchers have now concluded that SRS to brain mets is a much better treatment for melanoma brain mets than is WBR, though some patients do opt to try it.  Here is an older article that addresses some general treatment options for brain mets:

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

It is also widely accepted that radiation in melanoma (in the brain or otherwise) provides a synergistic beneficial effect when combined with immunotherapy – ipi (yervoy), nivo (0pdivo), or pembro (Keytruda)….which it seems your dad's docs have done.

In regard to immunotherapy…the anti-PD1 products have about a 40% response rate.  Ipi – about 15%.  When ipi/nivo is combined, response rate is about 50-55%.  Immunotherapy is not something that works very rapidly.  Melanoma researchers advise oncologists to "give the patient time".  There is also something called pseudoprogression, where an influx of t cells can actually make the tumor appear larger before it shrinks.  I am not saying that is the case with your father, but there it is. 

Things do become very difficult when things are progressing at a rapid rate and it doesn't seem that the patient has "time" to wait for treatment effect.  Another option that does work quickly are BRAF inhibiitors.  They provide a response rate of 70-80%, BUT your tumors must be BRAF positive for them to work….and tumors often develop resistance to the drugs in 6-9 months.  However, they can be useful in gaining a rapid reduction in tumor burden before switching the patient to immunotherapy.  However, since the docs have not mentioned this, I assume your father is not BRAF positive…but if this has not been addressed you can ask.

There are many articles addressing all of these things on my blog if you find it helpful.  Use the search bubble at the top left.  There are also many knowledgable folks on the forum.

Again, I am sorry for your father's difficulties.  Melanoma is a beast.  Hang in there.  Celeste

I am sorry for what you and your father are dealing with.  Melanoma researchers have now concluded that SRS to brain mets is a much better treatment for melanoma brain mets than is WBR, though some patients do opt to try it.  Here is an older article that addresses some general treatment options for brain mets:

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

It is also widely accepted that radiation in melanoma (in the brain or otherwise) provides a synergistic beneficial effect when combined with immunotherapy – ipi (yervoy), nivo (0pdivo), or pembro (Keytruda)….which it seems your dad's docs have done.

In regard to immunotherapy…the anti-PD1 products have about a 40% response rate.  Ipi – about 15%.  When ipi/nivo is combined, response rate is about 50-55%.  Immunotherapy is not something that works very rapidly.  Melanoma researchers advise oncologists to "give the patient time".  There is also something called pseudoprogression, where an influx of t cells can actually make the tumor appear larger before it shrinks.  I am not saying that is the case with your father, but there it is. 

Things do become very difficult when things are progressing at a rapid rate and it doesn't seem that the patient has "time" to wait for treatment effect.  Another option that does work quickly are BRAF inhibiitors.  They provide a response rate of 70-80%, BUT your tumors must be BRAF positive for them to work….and tumors often develop resistance to the drugs in 6-9 months.  However, they can be useful in gaining a rapid reduction in tumor burden before switching the patient to immunotherapy.  However, since the docs have not mentioned this, I assume your father is not BRAF positive…but if this has not been addressed you can ask.

There are many articles addressing all of these things on my blog if you find it helpful.  Use the search bubble at the top left.  There are also many knowledgable folks on the forum.

Again, I am sorry for your father's difficulties.  Melanoma is a beast.  Hang in there.  Celeste

I am sorry for what you and your father are dealing with.  Melanoma researchers have now concluded that SRS to brain mets is a much better treatment for melanoma brain mets than is WBR, though some patients do opt to try it.  Here is an older article that addresses some general treatment options for brain mets:

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

It is also widely accepted that radiation in melanoma (in the brain or otherwise) provides a synergistic beneficial effect when combined with immunotherapy – ipi (yervoy), nivo (0pdivo), or pembro (Keytruda)….which it seems your dad's docs have done.

In regard to immunotherapy…the anti-PD1 products have about a 40% response rate.  Ipi – about 15%.  When ipi/nivo is combined, response rate is about 50-55%.  Immunotherapy is not something that works very rapidly.  Melanoma researchers advise oncologists to "give the patient time".  There is also something called pseudoprogression, where an influx of t cells can actually make the tumor appear larger before it shrinks.  I am not saying that is the case with your father, but there it is. 

Things do become very difficult when things are progressing at a rapid rate and it doesn't seem that the patient has "time" to wait for treatment effect.  Another option that does work quickly are BRAF inhibiitors.  They provide a response rate of 70-80%, BUT your tumors must be BRAF positive for them to work….and tumors often develop resistance to the drugs in 6-9 months.  However, they can be useful in gaining a rapid reduction in tumor burden before switching the patient to immunotherapy.  However, since the docs have not mentioned this, I assume your father is not BRAF positive…but if this has not been addressed you can ask.

There are many articles addressing all of these things on my blog if you find it helpful.  Use the search bubble at the top left.  There are also many knowledgable folks on the forum.

Again, I am sorry for your father's difficulties.  Melanoma is a beast.  Hang in there.  Celeste

Hi – Just posted an update about my sister. Her brain mets were found in May and they were everywhere – so many of them, they couldn't be counted and several of the largest were bleeding. WBR was the only option given. By then, she had also received two infusions of ipi/nivo combo but that was stopped due to problems with her retinas.

The first follow-up brain scan showed no change but no new mets either. Results of the second scan are just in and the news was very positive – brain mets have resolved.

She takes a drug they give to Alzheimers patients for memory (that was from the beginning, though her memory does not seem to have suffered) and she's also now taking Ritalin, as she finds it helps her energy levels. Other than that and losing her hair, there were no other immediate side effects although, apparently, it can be up to two years for side effects to emerge.

All I can say is that WBR and ipi/nivo produced great results for her and if she hadn't had the WBR, she wouldn't be here right now. If that is the only recourse available for your father, why not try?

My best thoughts and wishes go out to your entire family!!

Barb

Hi – Just posted an update about my sister. Her brain mets were found in May and they were everywhere – so many of them, they couldn't be counted and several of the largest were bleeding. WBR was the only option given. By then, she had also received two infusions of ipi/nivo combo but that was stopped due to problems with her retinas.

The first follow-up brain scan showed no change but no new mets either. Results of the second scan are just in and the news was very positive – brain mets have resolved.

She takes a drug they give to Alzheimers patients for memory (that was from the beginning, though her memory does not seem to have suffered) and she's also now taking Ritalin, as she finds it helps her energy levels. Other than that and losing her hair, there were no other immediate side effects although, apparently, it can be up to two years for side effects to emerge.

All I can say is that WBR and ipi/nivo produced great results for her and if she hadn't had the WBR, she wouldn't be here right now. If that is the only recourse available for your father, why not try?

My best thoughts and wishes go out to your entire family!!

Barb

Hi – Just posted an update about my sister. Her brain mets were found in May and they were everywhere – so many of them, they couldn't be counted and several of the largest were bleeding. WBR was the only option given. By then, she had also received two infusions of ipi/nivo combo but that was stopped due to problems with her retinas.

The first follow-up brain scan showed no change but no new mets either. Results of the second scan are just in and the news was very positive – brain mets have resolved.

She takes a drug they give to Alzheimers patients for memory (that was from the beginning, though her memory does not seem to have suffered) and she's also now taking Ritalin, as she finds it helps her energy levels. Other than that and losing her hair, there were no other immediate side effects although, apparently, it can be up to two years for side effects to emerge.

All I can say is that WBR and ipi/nivo produced great results for her and if she hadn't had the WBR, she wouldn't be here right now. If that is the only recourse available for your father, why not try?

My best thoughts and wishes go out to your entire family!!

Barb

Hi there – so sorry to hear about your Dad. Not sure where he is located and if he ever had a second opinion when he was first diagnosed…if he did, perhaps he can go back for a second opinion again to the same medical team.

I too had a few hemorrhagic brain mets and was presented with WBR or "a few weeks to live" back in the spring of this year. I got a second opinion that involved surgery, SRS + partial brain radiation, followed by pembro. That seems to have worked very well for me, although I have my 6-month brain MRI in Jan. (3-month scan was looking good!)

It's my understanding that the single-agent pembro or keytruda needs time to take. When was his last body scan? Curious to know whether the progression is just in the brain (which is where tumors are most aggressive I believe) or in the body as well…perhaps the immunotherapy is kicking in to reduce tumor load in the body?

If your dad wants to keep on fighting there are definitely more options! Thoughts and prayers are with you and your dad…

Hi there – so sorry to hear about your Dad. Not sure where he is located and if he ever had a second opinion when he was first diagnosed…if he did, perhaps he can go back for a second opinion again to the same medical team.

I too had a few hemorrhagic brain mets and was presented with WBR or "a few weeks to live" back in the spring of this year. I got a second opinion that involved surgery, SRS + partial brain radiation, followed by pembro. That seems to have worked very well for me, although I have my 6-month brain MRI in Jan. (3-month scan was looking good!)

It's my understanding that the single-agent pembro or keytruda needs time to take. When was his last body scan? Curious to know whether the progression is just in the brain (which is where tumors are most aggressive I believe) or in the body as well…perhaps the immunotherapy is kicking in to reduce tumor load in the body?

If your dad wants to keep on fighting there are definitely more options! Thoughts and prayers are with you and your dad…

Hi there – so sorry to hear about your Dad. Not sure where he is located and if he ever had a second opinion when he was first diagnosed…if he did, perhaps he can go back for a second opinion again to the same medical team.

I too had a few hemorrhagic brain mets and was presented with WBR or "a few weeks to live" back in the spring of this year. I got a second opinion that involved surgery, SRS + partial brain radiation, followed by pembro. That seems to have worked very well for me, although I have my 6-month brain MRI in Jan. (3-month scan was looking good!)

It's my understanding that the single-agent pembro or keytruda needs time to take. When was his last body scan? Curious to know whether the progression is just in the brain (which is where tumors are most aggressive I believe) or in the body as well…perhaps the immunotherapy is kicking in to reduce tumor load in the body?

If your dad wants to keep on fighting there are definitely more options! Thoughts and prayers are with you and your dad…

My husband had WBR last summer. It was not very effective in controlling his melanoma, which had become leptomeningeal. What worked for his brain lesions was a combination of Tafinlar and Mekinist. WBR will change your father's personality most likely. By that I mean it will dull the person that he is today. My husband was not the same, was kind of just "there" if that makes sense. We would talk, laugh and such, but his essence was missing. 

I do think the Cyberknife (pointed laser) is the best, even for multiple lesions. The side effects are strong, however. Extreme fatigue is the main one. My husband had great results from that. 

Godspeed to you and your father.

My husband had WBR last summer. It was not very effective in controlling his melanoma, which had become leptomeningeal. What worked for his brain lesions was a combination of Tafinlar and Mekinist. WBR will change your father's personality most likely. By that I mean it will dull the person that he is today. My husband was not the same, was kind of just "there" if that makes sense. We would talk, laugh and such, but his essence was missing. 

I do think the Cyberknife (pointed laser) is the best, even for multiple lesions. The side effects are strong, however. Extreme fatigue is the main one. My husband had great results from that. 

Godspeed to you and your father.

My husband had WBR last summer. It was not very effective in controlling his melanoma, which had become leptomeningeal. What worked for his brain lesions was a combination of Tafinlar and Mekinist. WBR will change your father's personality most likely. By that I mean it will dull the person that he is today. My husband was not the same, was kind of just "there" if that makes sense. We would talk, laugh and such, but his essence was missing. 

I do think the Cyberknife (pointed laser) is the best, even for multiple lesions. The side effects are strong, however. Extreme fatigue is the main one. My husband had great results from that. 

Godspeed to you and your father.