› Forums › General Melanoma Community › Brain Mets after COMBO Braf/Mek??????
- This topic has 18 replies, 5 voices, and was last updated 9 years, 8 months ago by
JerryfromFauq.
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- August 9, 2014 at 2:11 pm
Dear Jualonso,
Sadly, melanoma is very unpredictable and does have a propensity to cause brain and lung mets. It can also deposit mets in tissue, liver, and bone….pretty much anywhere it wants to. I even had a tonsilar met, for heaven's sake! As I recall…and may be wrong…but you are on a BRAFi and NED…yes? If that is so…that's wonderful!! There are many folks who do very well on BRAFi for longer times especially when using intermittent dosing and combining it with a MEKi. There are many studies demonstrating BRAFi effectiveness in brain tumors. You can use the bubble in the top left corner of my blog to search for more info about all of that.
But here's the thing… With melanoma…and life, actually, we do NOT have any absolutes. I admit that I have moments when I worry about my future. But, I prefer to spend most of whatever moments I continue to have LIVING and doing as little wasteful worrying as possible! There's a quote I love from Cloud Atlas…it goes something like….I aint the first 'un have'n to live not know'n…and I ain't the last.
I wish you my very best, a little hope, some helpful knowledge if I have any to share, and much peace.
yours, Celeste
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- August 9, 2014 at 2:11 pm
Dear Jualonso,
Sadly, melanoma is very unpredictable and does have a propensity to cause brain and lung mets. It can also deposit mets in tissue, liver, and bone….pretty much anywhere it wants to. I even had a tonsilar met, for heaven's sake! As I recall…and may be wrong…but you are on a BRAFi and NED…yes? If that is so…that's wonderful!! There are many folks who do very well on BRAFi for longer times especially when using intermittent dosing and combining it with a MEKi. There are many studies demonstrating BRAFi effectiveness in brain tumors. You can use the bubble in the top left corner of my blog to search for more info about all of that.
But here's the thing… With melanoma…and life, actually, we do NOT have any absolutes. I admit that I have moments when I worry about my future. But, I prefer to spend most of whatever moments I continue to have LIVING and doing as little wasteful worrying as possible! There's a quote I love from Cloud Atlas…it goes something like….I aint the first 'un have'n to live not know'n…and I ain't the last.
I wish you my very best, a little hope, some helpful knowledge if I have any to share, and much peace.
yours, Celeste
-
- August 9, 2014 at 2:11 pm
Dear Jualonso,
Sadly, melanoma is very unpredictable and does have a propensity to cause brain and lung mets. It can also deposit mets in tissue, liver, and bone….pretty much anywhere it wants to. I even had a tonsilar met, for heaven's sake! As I recall…and may be wrong…but you are on a BRAFi and NED…yes? If that is so…that's wonderful!! There are many folks who do very well on BRAFi for longer times especially when using intermittent dosing and combining it with a MEKi. There are many studies demonstrating BRAFi effectiveness in brain tumors. You can use the bubble in the top left corner of my blog to search for more info about all of that.
But here's the thing… With melanoma…and life, actually, we do NOT have any absolutes. I admit that I have moments when I worry about my future. But, I prefer to spend most of whatever moments I continue to have LIVING and doing as little wasteful worrying as possible! There's a quote I love from Cloud Atlas…it goes something like….I aint the first 'un have'n to live not know'n…and I ain't the last.
I wish you my very best, a little hope, some helpful knowledge if I have any to share, and much peace.
yours, Celeste
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- August 9, 2014 at 4:05 pm
I have been on this combo since it was approved by FDA several months (6?) ago after being on Zelbarof alone. My last PET scan 3 weeks ago revealed multiple mets in brain. I just had the 2 largest treated radiostatically last week. Both my oncologist and radiologist expressed that targeted immunotherapy meds have a hard time crossing the blood/brain barrier. I am very curious if research is being done on how to get these meds up in to our brains! I still have an uncountable amount of mets in brain that weren't there 6 months ago when I was on Zelb. I do hope research is being done in this area.
Not to get woo-woo but I heard that reishi tea crosses the b/b barrier and am wondering if anyone is using this to facilitate transport of these meds. I haven't tried it yet myself, but have it sitting on the shelf while I research.
grace,
kali
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- August 9, 2014 at 10:36 pm
Hi Grace,
I am sorry to hear about the new brain mets and hope the information/links I provided below can help you.
To answer your question there have been a few retrospective studies on brain mets, gamma knife radiation and ipilimumab (Yervoy). The results look very promising.
My Mom, who was diagnosed in November of 2013, had gamma knife radiation on 12/9 and started ipilimumab on 12/12. The doctor chose this over a BRAF pill because ipi stimulates T-cells which are in the brain and since she was BRAF positive we had that as a backup if we were not seeing any results. Based on the studies they do have there seems to be a synergistic effect with gamma knife treatment and ipi. (There also maybe one with MK-3475 (Pembrolizumab).)
The theory, as I understand it, goes something like this: when gamma knife radiation is preformed small particles of melanoma are released into the blood stream, which stimulate the immune system. Starting ipi, which also stimulates the immune system, may "rev up" the now active immune system much more. – 2 things might just be better than 1…
We have been told that ipi "seems" to work "last" on the brain and my Mom's results might help to "prove" this out later, but no one really knows yet…
My Mom's results have been for the most part excellent even though she had gamma knife radiation a second time on 4/15 for 16 brain mets. (24 in all were treated during the two sessions.)
Ipi/Yervoy, at least for her, started decreasing the size of her tumors within days. (These were located under her scalp and on her neck and very visible.) She had 18 tumors on her scalp and by day 21 they had shrunk and by day 42 the largest was gone and many were gone or had shrunk dramatically. Today you can't find anything but a speck or two on her head and the CT's and recent MRI for her brain show everything in her body getting smaller or looking like "old disease"/calcium deposits and she has no new brain mets since the last gamma knife radiation on 4/15. – No cognitive dysfunction, seizures…
My Mom is being treated by Dr. Mike Wong and Dr. Eric Chang at USC in Los Angeles.
Here are two studies on brain mets and ipilumumab:
Ipilimumab and radiation therapy for melanoma brain metastases. 2013
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3892394/
Survival of melanoma patients with brain metastases treated with ipilimumab and stereotactic radiosurgery. 2013.
http://www.accc-cancer.org/ossn_network/SC/presentations/SCNC-Spring2013-Tazi.pdf
Merck Expanded Access (MK-3475/Pembrolizumab) for Melanoma Patients
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- August 12, 2014 at 4:49 pm
thank you for your in depth reply. i will read over these links carefully. i've been reluctant to switch to yervoy from braf for 3 reasons:
1) i would have to be very closely monitored and i live 4 hrs from my doctors
2) my understanding is that the side effects are horrific
3) also my understanding that once on ip, one cannot return to braf inhibitors.
when my first not brain met developed this past winter my oncologist suggested yervoy. i was very reluctant and then fda approved the mek/tafinlar combo so we went there. he hasn't mentioned a higher effectiveness of yervoy on brain mets. as i said i'll read through these links and maybe bring up with him in a few weeks when i go for follow up from last cyberknife treatments.
thank you again for your time and knowledge.
-
- August 12, 2014 at 4:49 pm
thank you for your in depth reply. i will read over these links carefully. i've been reluctant to switch to yervoy from braf for 3 reasons:
1) i would have to be very closely monitored and i live 4 hrs from my doctors
2) my understanding is that the side effects are horrific
3) also my understanding that once on ip, one cannot return to braf inhibitors.
when my first not brain met developed this past winter my oncologist suggested yervoy. i was very reluctant and then fda approved the mek/tafinlar combo so we went there. he hasn't mentioned a higher effectiveness of yervoy on brain mets. as i said i'll read through these links and maybe bring up with him in a few weeks when i go for follow up from last cyberknife treatments.
thank you again for your time and knowledge.
-
- August 12, 2014 at 4:49 pm
thank you for your in depth reply. i will read over these links carefully. i've been reluctant to switch to yervoy from braf for 3 reasons:
1) i would have to be very closely monitored and i live 4 hrs from my doctors
2) my understanding is that the side effects are horrific
3) also my understanding that once on ip, one cannot return to braf inhibitors.
when my first not brain met developed this past winter my oncologist suggested yervoy. i was very reluctant and then fda approved the mek/tafinlar combo so we went there. he hasn't mentioned a higher effectiveness of yervoy on brain mets. as i said i'll read through these links and maybe bring up with him in a few weeks when i go for follow up from last cyberknife treatments.
thank you again for your time and knowledge.
-
- August 9, 2014 at 10:36 pm
Hi Grace,
I am sorry to hear about the new brain mets and hope the information/links I provided below can help you.
To answer your question there have been a few retrospective studies on brain mets, gamma knife radiation and ipilimumab (Yervoy). The results look very promising.
My Mom, who was diagnosed in November of 2013, had gamma knife radiation on 12/9 and started ipilimumab on 12/12. The doctor chose this over a BRAF pill because ipi stimulates T-cells which are in the brain and since she was BRAF positive we had that as a backup if we were not seeing any results. Based on the studies they do have there seems to be a synergistic effect with gamma knife treatment and ipi. (There also maybe one with MK-3475 (Pembrolizumab).)
The theory, as I understand it, goes something like this: when gamma knife radiation is preformed small particles of melanoma are released into the blood stream, which stimulate the immune system. Starting ipi, which also stimulates the immune system, may "rev up" the now active immune system much more. – 2 things might just be better than 1…
We have been told that ipi "seems" to work "last" on the brain and my Mom's results might help to "prove" this out later, but no one really knows yet…
My Mom's results have been for the most part excellent even though she had gamma knife radiation a second time on 4/15 for 16 brain mets. (24 in all were treated during the two sessions.)
Ipi/Yervoy, at least for her, started decreasing the size of her tumors within days. (These were located under her scalp and on her neck and very visible.) She had 18 tumors on her scalp and by day 21 they had shrunk and by day 42 the largest was gone and many were gone or had shrunk dramatically. Today you can't find anything but a speck or two on her head and the CT's and recent MRI for her brain show everything in her body getting smaller or looking like "old disease"/calcium deposits and she has no new brain mets since the last gamma knife radiation on 4/15. – No cognitive dysfunction, seizures…
My Mom is being treated by Dr. Mike Wong and Dr. Eric Chang at USC in Los Angeles.
Here are two studies on brain mets and ipilumumab:
Ipilimumab and radiation therapy for melanoma brain metastases. 2013
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3892394/
Survival of melanoma patients with brain metastases treated with ipilimumab and stereotactic radiosurgery. 2013.
http://www.accc-cancer.org/ossn_network/SC/presentations/SCNC-Spring2013-Tazi.pdf
Merck Expanded Access (MK-3475/Pembrolizumab) for Melanoma Patients
-
- August 9, 2014 at 10:36 pm
Hi Grace,
I am sorry to hear about the new brain mets and hope the information/links I provided below can help you.
To answer your question there have been a few retrospective studies on brain mets, gamma knife radiation and ipilimumab (Yervoy). The results look very promising.
My Mom, who was diagnosed in November of 2013, had gamma knife radiation on 12/9 and started ipilimumab on 12/12. The doctor chose this over a BRAF pill because ipi stimulates T-cells which are in the brain and since she was BRAF positive we had that as a backup if we were not seeing any results. Based on the studies they do have there seems to be a synergistic effect with gamma knife treatment and ipi. (There also maybe one with MK-3475 (Pembrolizumab).)
The theory, as I understand it, goes something like this: when gamma knife radiation is preformed small particles of melanoma are released into the blood stream, which stimulate the immune system. Starting ipi, which also stimulates the immune system, may "rev up" the now active immune system much more. – 2 things might just be better than 1…
We have been told that ipi "seems" to work "last" on the brain and my Mom's results might help to "prove" this out later, but no one really knows yet…
My Mom's results have been for the most part excellent even though she had gamma knife radiation a second time on 4/15 for 16 brain mets. (24 in all were treated during the two sessions.)
Ipi/Yervoy, at least for her, started decreasing the size of her tumors within days. (These were located under her scalp and on her neck and very visible.) She had 18 tumors on her scalp and by day 21 they had shrunk and by day 42 the largest was gone and many were gone or had shrunk dramatically. Today you can't find anything but a speck or two on her head and the CT's and recent MRI for her brain show everything in her body getting smaller or looking like "old disease"/calcium deposits and she has no new brain mets since the last gamma knife radiation on 4/15. – No cognitive dysfunction, seizures…
My Mom is being treated by Dr. Mike Wong and Dr. Eric Chang at USC in Los Angeles.
Here are two studies on brain mets and ipilumumab:
Ipilimumab and radiation therapy for melanoma brain metastases. 2013
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3892394/
Survival of melanoma patients with brain metastases treated with ipilimumab and stereotactic radiosurgery. 2013.
http://www.accc-cancer.org/ossn_network/SC/presentations/SCNC-Spring2013-Tazi.pdf
Merck Expanded Access (MK-3475/Pembrolizumab) for Melanoma Patients
-
- August 9, 2014 at 4:05 pm
I have been on this combo since it was approved by FDA several months (6?) ago after being on Zelbarof alone. My last PET scan 3 weeks ago revealed multiple mets in brain. I just had the 2 largest treated radiostatically last week. Both my oncologist and radiologist expressed that targeted immunotherapy meds have a hard time crossing the blood/brain barrier. I am very curious if research is being done on how to get these meds up in to our brains! I still have an uncountable amount of mets in brain that weren't there 6 months ago when I was on Zelb. I do hope research is being done in this area.
Not to get woo-woo but I heard that reishi tea crosses the b/b barrier and am wondering if anyone is using this to facilitate transport of these meds. I haven't tried it yet myself, but have it sitting on the shelf while I research.
grace,
kali
-
- August 9, 2014 at 4:05 pm
I have been on this combo since it was approved by FDA several months (6?) ago after being on Zelbarof alone. My last PET scan 3 weeks ago revealed multiple mets in brain. I just had the 2 largest treated radiostatically last week. Both my oncologist and radiologist expressed that targeted immunotherapy meds have a hard time crossing the blood/brain barrier. I am very curious if research is being done on how to get these meds up in to our brains! I still have an uncountable amount of mets in brain that weren't there 6 months ago when I was on Zelb. I do hope research is being done in this area.
Not to get woo-woo but I heard that reishi tea crosses the b/b barrier and am wondering if anyone is using this to facilitate transport of these meds. I haven't tried it yet myself, but have it sitting on the shelf while I research.
grace,
kali
-
- August 13, 2014 at 2:58 am
The problem with chemo therapy is that very few moleculs are small enough to get thru the blood brain barrier. (BBB). Immunology does not go thru the BBB. The different Immunology therapies each work slightly differently to enhance the Immunesystem to "trian" the T-cells to know that them melanoma cells are BAD. The T-cells then, hopefully, go to work in overdrive. This overdrive is the reason for the possible bad side-effects. They do no't just go into overdrive gainst cancer cells, but in some cases cause immune system problems. Approximatel 45-50% of Stage IV melanoma patients will develope brain mets. I have not seen the exact figures, but it does appear that the compo may have a higher rte of brain mets afterwards. Is this because those people are still alive? The subject is being looked at and the data will be interesting.
-
- August 13, 2014 at 2:58 am
The problem with chemo therapy is that very few moleculs are small enough to get thru the blood brain barrier. (BBB). Immunology does not go thru the BBB. The different Immunology therapies each work slightly differently to enhance the Immunesystem to "trian" the T-cells to know that them melanoma cells are BAD. The T-cells then, hopefully, go to work in overdrive. This overdrive is the reason for the possible bad side-effects. They do no't just go into overdrive gainst cancer cells, but in some cases cause immune system problems. Approximatel 45-50% of Stage IV melanoma patients will develope brain mets. I have not seen the exact figures, but it does appear that the compo may have a higher rte of brain mets afterwards. Is this because those people are still alive? The subject is being looked at and the data will be interesting.
-
- August 13, 2014 at 2:58 am
The problem with chemo therapy is that very few moleculs are small enough to get thru the blood brain barrier. (BBB). Immunology does not go thru the BBB. The different Immunology therapies each work slightly differently to enhance the Immunesystem to "trian" the T-cells to know that them melanoma cells are BAD. The T-cells then, hopefully, go to work in overdrive. This overdrive is the reason for the possible bad side-effects. They do no't just go into overdrive gainst cancer cells, but in some cases cause immune system problems. Approximatel 45-50% of Stage IV melanoma patients will develope brain mets. I have not seen the exact figures, but it does appear that the compo may have a higher rte of brain mets afterwards. Is this because those people are still alive? The subject is being looked at and the data will be interesting.
-
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