› Forums › General Melanoma Community › Melanoma in Brain – 2
- This topic has 36 replies, 5 voices, and was last updated 10 years, 6 months ago by
ilikepralinen.
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- June 5, 2014 at 5:48 pm
Hello Everyone,
I am bit confused now about this Disease.
Last weeks i got the results of couple of scans.
1. MRI – Spinal : No Primary Tumor detected.
2. PET – CT :No Primary Tumor detected.
3. Blood : No signs of Metastatic Melanoma.
4. MRI – Head – Necrosis has began.
As of now, doctors unable to find a Primary site.
Is the Initial Diagnosis wrong ?? (Metastatic Melanoma in Brain).
( My Original Post : http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/melanoma-brain)
My Skin specialist feels that its only there in the brain. Skin specialist wants to wait and see the results of Brachytherapy (Radiation). As there is lot of side effects with the medication, Skin Specialist wants to begin it only when it is required. (dabrafenib + trametinib).
Has anyone more info on Primary Melanoma in Brain??
Can you detect Melanoma in Blood?
Does having brown skin influence BRAF V600E test results?
Has anyone used the combination of the following Medicines? (dabrafenib + trametinib)
Thanks a lot in Advance
- Replies
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- June 5, 2014 at 6:22 pm
I posted this in your other thread, too…A couple of thoughts for you… I don't have any specific information on a primary melanoma in the brain. I suppose it's possible or I think there's also a good possibility that it started as microcopic disease at a more common site and then metastasized to the brain, with the microscopic disease still being present or perhaps even being successfully attacked by your immune system without any "help" from any treatment agent.I don't believe there is a blood test specific to melanoma. As far as the diagnosis and pathology, there are several markers that are used to test for melanoma. My understanding is that both MART-1 and HMB-45 are highly specific for melanoma, i.e. they're not going to be present in other kinds of tumors. And I think S-100 is a protein that is present in all melanocytes (whether normal or malignant). A positive stain for S-100 isn't itself proof of melanoma, but the presence of melanocytes in tissue where it's not normally found, combined with a positive stain for MART-1 and HMB-45, increases the likelihood. I recently had a bone tumor resected – according to my orthopedic oncologist, the tumor was almost completely black, which is consisent with the presence of a large concentration of melanocytes, which aren't normall found in the middle of a bone. During the procedure, they perform a "frozen section", it's a biopsy that is tested during the operation. This tumor had previously received radiation therapy, so much of it was dead and therefore didn't stain strongly for melanoma. There was some new tumor growth (which is what lit up on my PET scan and is why I had the surgery), however, and in the "permanent section", the biopsy tested after the operation, some of the samples tested for MART-1 and S-100 (as I understand it at least). Again, S-100 wouldn't necessarily be cause for alarm, except that this was for tissue in the bone, where you wouldn't expect to find a concentration of melanocytes.Finally, and this was something that just came up in conversation within the past few months with my medical oncologist and is my understanding of what he mentioned. Mutated BRAF itself isn't a marker for melanoma. They believe that a significant percentage of the population who have a large number of moles or dysplastic nevi, most of whom will never develop melanoma, would test positive for a mutated BRAF gene. The mutated BRAF can then be used as a target for the BRAF inhibitors (vemurafenib, tafinlar), but by itself isn't a test for melanoma – just like a large number of moles or dysplastic nevi isn't a test for melanoma.I hope that helps. I would certainly suggest talking with your doctor specifically about your pathology report and ask for an easy-to-understand explanation. If you're not comfortable with the explanation, seek a second opinion, if only to find someone who can explain it in a way that helps you understand. -
- June 5, 2014 at 6:22 pm
I posted this in your other thread, too…A couple of thoughts for you… I don't have any specific information on a primary melanoma in the brain. I suppose it's possible or I think there's also a good possibility that it started as microcopic disease at a more common site and then metastasized to the brain, with the microscopic disease still being present or perhaps even being successfully attacked by your immune system without any "help" from any treatment agent.I don't believe there is a blood test specific to melanoma. As far as the diagnosis and pathology, there are several markers that are used to test for melanoma. My understanding is that both MART-1 and HMB-45 are highly specific for melanoma, i.e. they're not going to be present in other kinds of tumors. And I think S-100 is a protein that is present in all melanocytes (whether normal or malignant). A positive stain for S-100 isn't itself proof of melanoma, but the presence of melanocytes in tissue where it's not normally found, combined with a positive stain for MART-1 and HMB-45, increases the likelihood. I recently had a bone tumor resected – according to my orthopedic oncologist, the tumor was almost completely black, which is consisent with the presence of a large concentration of melanocytes, which aren't normall found in the middle of a bone. During the procedure, they perform a "frozen section", it's a biopsy that is tested during the operation. This tumor had previously received radiation therapy, so much of it was dead and therefore didn't stain strongly for melanoma. There was some new tumor growth (which is what lit up on my PET scan and is why I had the surgery), however, and in the "permanent section", the biopsy tested after the operation, some of the samples tested for MART-1 and S-100 (as I understand it at least). Again, S-100 wouldn't necessarily be cause for alarm, except that this was for tissue in the bone, where you wouldn't expect to find a concentration of melanocytes.Finally, and this was something that just came up in conversation within the past few months with my medical oncologist and is my understanding of what he mentioned. Mutated BRAF itself isn't a marker for melanoma. They believe that a significant percentage of the population who have a large number of moles or dysplastic nevi, most of whom will never develop melanoma, would test positive for a mutated BRAF gene. The mutated BRAF can then be used as a target for the BRAF inhibitors (vemurafenib, tafinlar), but by itself isn't a test for melanoma – just like a large number of moles or dysplastic nevi isn't a test for melanoma.I hope that helps. I would certainly suggest talking with your doctor specifically about your pathology report and ask for an easy-to-understand explanation. If you're not comfortable with the explanation, seek a second opinion, if only to find someone who can explain it in a way that helps you understand.-
- June 7, 2014 at 9:25 am
Hallo RJoeb,
thanks a lot for the reply. I will talk with my Doctor once again regarding the pathology report
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- June 7, 2014 at 9:25 am
Hallo RJoeb,
thanks a lot for the reply. I will talk with my Doctor once again regarding the pathology report
-
- June 7, 2014 at 9:25 am
Hallo RJoeb,
thanks a lot for the reply. I will talk with my Doctor once again regarding the pathology report
-
- June 5, 2014 at 6:22 pm
I posted this in your other thread, too…A couple of thoughts for you… I don't have any specific information on a primary melanoma in the brain. I suppose it's possible or I think there's also a good possibility that it started as microcopic disease at a more common site and then metastasized to the brain, with the microscopic disease still being present or perhaps even being successfully attacked by your immune system without any "help" from any treatment agent.I don't believe there is a blood test specific to melanoma. As far as the diagnosis and pathology, there are several markers that are used to test for melanoma. My understanding is that both MART-1 and HMB-45 are highly specific for melanoma, i.e. they're not going to be present in other kinds of tumors. And I think S-100 is a protein that is present in all melanocytes (whether normal or malignant). A positive stain for S-100 isn't itself proof of melanoma, but the presence of melanocytes in tissue where it's not normally found, combined with a positive stain for MART-1 and HMB-45, increases the likelihood. I recently had a bone tumor resected – according to my orthopedic oncologist, the tumor was almost completely black, which is consisent with the presence of a large concentration of melanocytes, which aren't normall found in the middle of a bone. During the procedure, they perform a "frozen section", it's a biopsy that is tested during the operation. This tumor had previously received radiation therapy, so much of it was dead and therefore didn't stain strongly for melanoma. There was some new tumor growth (which is what lit up on my PET scan and is why I had the surgery), however, and in the "permanent section", the biopsy tested after the operation, some of the samples tested for MART-1 and S-100 (as I understand it at least). Again, S-100 wouldn't necessarily be cause for alarm, except that this was for tissue in the bone, where you wouldn't expect to find a concentration of melanocytes.Finally, and this was something that just came up in conversation within the past few months with my medical oncologist and is my understanding of what he mentioned. Mutated BRAF itself isn't a marker for melanoma. They believe that a significant percentage of the population who have a large number of moles or dysplastic nevi, most of whom will never develop melanoma, would test positive for a mutated BRAF gene. The mutated BRAF can then be used as a target for the BRAF inhibitors (vemurafenib, tafinlar), but by itself isn't a test for melanoma – just like a large number of moles or dysplastic nevi isn't a test for melanoma.I hope that helps. I would certainly suggest talking with your doctor specifically about your pathology report and ask for an easy-to-understand explanation. If you're not comfortable with the explanation, seek a second opinion, if only to find someone who can explain it in a way that helps you understand. -
- June 5, 2014 at 10:04 pm
I'm afraid I'm not very up to speed on brain met treatments but I might suggest you do some research on brain radiation in conjunction with systemic treatment. I'm not sure if there is reported benefit with radiation and dabrafenib + trametinib but there are studies that clearly indicate a benefit with radiation and Ipi. Again I'm not real familiar with these treatments but maybe someone else can chime in or you can ask your doctors about this.
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- June 5, 2014 at 10:04 pm
I'm afraid I'm not very up to speed on brain met treatments but I might suggest you do some research on brain radiation in conjunction with systemic treatment. I'm not sure if there is reported benefit with radiation and dabrafenib + trametinib but there are studies that clearly indicate a benefit with radiation and Ipi. Again I'm not real familiar with these treatments but maybe someone else can chime in or you can ask your doctors about this.
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- June 5, 2014 at 10:04 pm
I'm afraid I'm not very up to speed on brain met treatments but I might suggest you do some research on brain radiation in conjunction with systemic treatment. I'm not sure if there is reported benefit with radiation and dabrafenib + trametinib but there are studies that clearly indicate a benefit with radiation and Ipi. Again I'm not real familiar with these treatments but maybe someone else can chime in or you can ask your doctors about this.
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- June 6, 2014 at 12:05 am
Brown skin has nothing to do with BRAF mutations…and according to your last post you are already known to be BRAF positive for V600E. More that 50% of folks with melanoma have this mutation. It is probably what gave you melanoma…but it is also what will make you most responsive to BRAF inhibitors. I had already given you some links on your last post…but this may help you understand as is explains what "BRAF" means and how it affects your situation….http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html
And yes…Dabradenib and trametinib are now often used together…articles in the above post address it.
Many people have "unknown primaries". Meaning = they never had….or never noticed…the original skin lesion and were only diagnosed with melanoma from a more internal lesion. If you had a biopsy of your brain lesion and it showed melanoma…that is probably what you have.
Melanoma is not detected in the blood. It is detected in the tumor itself.
This post addresses vemurafenib re brain mets in particular:
This post addresses treatment for melanoma brain mets generally:
Unfortunately, there are no easy answers to be had and certainly none that we can give you outright. You will have to educate yourself, find a melanoma specialist, and advocate for your care. I wish it weren't that hard…but it sadly…that is the deal. Hang in there. I wish you my best. Celeste
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- June 6, 2014 at 12:05 am
Brown skin has nothing to do with BRAF mutations…and according to your last post you are already known to be BRAF positive for V600E. More that 50% of folks with melanoma have this mutation. It is probably what gave you melanoma…but it is also what will make you most responsive to BRAF inhibitors. I had already given you some links on your last post…but this may help you understand as is explains what "BRAF" means and how it affects your situation….http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html
And yes…Dabradenib and trametinib are now often used together…articles in the above post address it.
Many people have "unknown primaries". Meaning = they never had….or never noticed…the original skin lesion and were only diagnosed with melanoma from a more internal lesion. If you had a biopsy of your brain lesion and it showed melanoma…that is probably what you have.
Melanoma is not detected in the blood. It is detected in the tumor itself.
This post addresses vemurafenib re brain mets in particular:
This post addresses treatment for melanoma brain mets generally:
Unfortunately, there are no easy answers to be had and certainly none that we can give you outright. You will have to educate yourself, find a melanoma specialist, and advocate for your care. I wish it weren't that hard…but it sadly…that is the deal. Hang in there. I wish you my best. Celeste
-
- June 6, 2014 at 12:05 am
Brown skin has nothing to do with BRAF mutations…and according to your last post you are already known to be BRAF positive for V600E. More that 50% of folks with melanoma have this mutation. It is probably what gave you melanoma…but it is also what will make you most responsive to BRAF inhibitors. I had already given you some links on your last post…but this may help you understand as is explains what "BRAF" means and how it affects your situation….http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html
And yes…Dabradenib and trametinib are now often used together…articles in the above post address it.
Many people have "unknown primaries". Meaning = they never had….or never noticed…the original skin lesion and were only diagnosed with melanoma from a more internal lesion. If you had a biopsy of your brain lesion and it showed melanoma…that is probably what you have.
Melanoma is not detected in the blood. It is detected in the tumor itself.
This post addresses vemurafenib re brain mets in particular:
This post addresses treatment for melanoma brain mets generally:
Unfortunately, there are no easy answers to be had and certainly none that we can give you outright. You will have to educate yourself, find a melanoma specialist, and advocate for your care. I wish it weren't that hard…but it sadly…that is the deal. Hang in there. I wish you my best. Celeste
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- June 7, 2014 at 9:33 am
Hallo Celeste,
once again thanks a lot for the links. According to the link, the combination of medicines is better.
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- June 7, 2014 at 9:33 am
Hallo Celeste,
once again thanks a lot for the links. According to the link, the combination of medicines is better.
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- June 7, 2014 at 9:33 am
Hallo Celeste,
once again thanks a lot for the links. According to the link, the combination of medicines is better.
-
- June 6, 2014 at 1:06 am
Yes I used the combo (dabrafenib + trametinib) ie: Tafinlar + Mekenist.
The side affects were extremely mild for me. From what I had read and others said the side affects are less when the 2 meds are taken together than if you only take 1.
Now vemurafenib (Ie: Zelboraf) was totally different with side affects for me I had a whole lot.
They also never found my primary. I started at stage 4 with metastized melanoma. No doctor has been able to explain it. The first doctor who was not a melanoma specialist thought I got the cancer cells somehow and my immune system fought them off except for my spine where they lay dormant until something triggered them to start growing like crazy. Other doctors have no idea and since it doesn't seem to change the treatments they do I guess it doesn't matter for me. My guess I must have had something on my back that eventually disappeared but went inside me and that first doctor might have been right.
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- June 6, 2014 at 1:06 am
Yes I used the combo (dabrafenib + trametinib) ie: Tafinlar + Mekenist.
The side affects were extremely mild for me. From what I had read and others said the side affects are less when the 2 meds are taken together than if you only take 1.
Now vemurafenib (Ie: Zelboraf) was totally different with side affects for me I had a whole lot.
They also never found my primary. I started at stage 4 with metastized melanoma. No doctor has been able to explain it. The first doctor who was not a melanoma specialist thought I got the cancer cells somehow and my immune system fought them off except for my spine where they lay dormant until something triggered them to start growing like crazy. Other doctors have no idea and since it doesn't seem to change the treatments they do I guess it doesn't matter for me. My guess I must have had something on my back that eventually disappeared but went inside me and that first doctor might have been right.
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- June 7, 2014 at 9:35 am
Hallo Arthur,
thanks a lot for the reply.
My Melanoma specialist feels, if radiation kills the cells, then i dont need the medicines.
I hope radiation works.
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- June 7, 2014 at 9:35 am
Hallo Arthur,
thanks a lot for the reply.
My Melanoma specialist feels, if radiation kills the cells, then i dont need the medicines.
I hope radiation works.
-
- June 7, 2014 at 9:35 am
Hallo Arthur,
thanks a lot for the reply.
My Melanoma specialist feels, if radiation kills the cells, then i dont need the medicines.
I hope radiation works.
-
- June 6, 2014 at 1:06 am
Yes I used the combo (dabrafenib + trametinib) ie: Tafinlar + Mekenist.
The side affects were extremely mild for me. From what I had read and others said the side affects are less when the 2 meds are taken together than if you only take 1.
Now vemurafenib (Ie: Zelboraf) was totally different with side affects for me I had a whole lot.
They also never found my primary. I started at stage 4 with metastized melanoma. No doctor has been able to explain it. The first doctor who was not a melanoma specialist thought I got the cancer cells somehow and my immune system fought them off except for my spine where they lay dormant until something triggered them to start growing like crazy. Other doctors have no idea and since it doesn't seem to change the treatments they do I guess it doesn't matter for me. My guess I must have had something on my back that eventually disappeared but went inside me and that first doctor might have been right.
-
- June 7, 2014 at 10:23 pm
I haven't used any of the BRAF or MEK medications yet, although I am BRAF positive, and my brain metastasis was not my primary. However, I did have a single brain metastasis about 15 months ago, about 2.5 years after my original diagnosis. It was about 2.5-cm in size and was first found on a PET scan (a few days before my annual brain MRI was scheduled). I didn't have any symptoms I was aware of, although in hindsight, I'd had two episodes of localized twitching in my left arm in the six weeks prior to the tumor appearing on the scan that were determined to be focal seizures. The tumor was located in the right side of my brain in the area responsible for left-side motor control. I had also experienced a slight "hitch" in my step that I attributed to a prior surgery. Once I started the steroids before any other treatment, my walking improved. Treatment consisted of a successful craniotomy to remove the tumor. I was diagnosed with the tumor on a Thursday, admitted and started on dexamethasone (steroid) immediately, had an MRI, and stabilized and sent home on Saturday, with a plan for surgery a few days later. I was re-admitted on Monday, had surgery Tuesday, spent the first night in the ICU, the second night in a regular room, and then home on Thursday.
About a month later I had CyberKnife SRS, a single session to treat the tumor bed, and a month after that, I started a four dose course of ipi, that I tolerated well.
Recognizing that there are no perfect answers, I think your doctor's approach is sound. I think there is a time and place for each of these new tools and treatments we have and I think of the BRAF and MEK inhibitors as best used when there is a large tumor burden and as a "bridge" to other therapies, like ipi or the anti-PD-1's, which may take more time to work. Because the anti-PD-1's might be difficult for you to qualify for in a trial setting and you wouldn't be eligible for the EAPs, if anything I'd think ipi might be a better option now than dabrafenib+tafinlar, certainly worth discussing with your doctor.
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- June 7, 2014 at 10:23 pm
I haven't used any of the BRAF or MEK medications yet, although I am BRAF positive, and my brain metastasis was not my primary. However, I did have a single brain metastasis about 15 months ago, about 2.5 years after my original diagnosis. It was about 2.5-cm in size and was first found on a PET scan (a few days before my annual brain MRI was scheduled). I didn't have any symptoms I was aware of, although in hindsight, I'd had two episodes of localized twitching in my left arm in the six weeks prior to the tumor appearing on the scan that were determined to be focal seizures. The tumor was located in the right side of my brain in the area responsible for left-side motor control. I had also experienced a slight "hitch" in my step that I attributed to a prior surgery. Once I started the steroids before any other treatment, my walking improved. Treatment consisted of a successful craniotomy to remove the tumor. I was diagnosed with the tumor on a Thursday, admitted and started on dexamethasone (steroid) immediately, had an MRI, and stabilized and sent home on Saturday, with a plan for surgery a few days later. I was re-admitted on Monday, had surgery Tuesday, spent the first night in the ICU, the second night in a regular room, and then home on Thursday.
About a month later I had CyberKnife SRS, a single session to treat the tumor bed, and a month after that, I started a four dose course of ipi, that I tolerated well.
Recognizing that there are no perfect answers, I think your doctor's approach is sound. I think there is a time and place for each of these new tools and treatments we have and I think of the BRAF and MEK inhibitors as best used when there is a large tumor burden and as a "bridge" to other therapies, like ipi or the anti-PD-1's, which may take more time to work. Because the anti-PD-1's might be difficult for you to qualify for in a trial setting and you wouldn't be eligible for the EAPs, if anything I'd think ipi might be a better option now than dabrafenib+tafinlar, certainly worth discussing with your doctor.
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- June 8, 2014 at 3:34 am
You may want to look into this trial:
http://clinicaltrials.gov/ct2/show/NCT02085070?term=NCT02085070.&rank=1
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- June 8, 2014 at 3:34 am
You may want to look into this trial:
http://clinicaltrials.gov/ct2/show/NCT02085070?term=NCT02085070.&rank=1
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- June 11, 2014 at 8:09 pm
Hallo Brian,
Thanks a lot for the link..
This information is quite new to me.
-
- June 11, 2014 at 8:09 pm
Hallo Brian,
Thanks a lot for the link..
This information is quite new to me.
-
- June 11, 2014 at 8:09 pm
Hallo Brian,
Thanks a lot for the link..
This information is quite new to me.
-
- June 8, 2014 at 3:34 am
You may want to look into this trial:
http://clinicaltrials.gov/ct2/show/NCT02085070?term=NCT02085070.&rank=1
-
- June 11, 2014 at 8:14 pm
Hallo RJoeb,
thanks a lot for the detailed reply. I shall ask my Doctor about IPI.
My brain MET is 1.7cm large. A primary site has not been found. In the last scan a 5mm necrosis was found. I will be having a couple more scans to see the effects of radiation.
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- June 11, 2014 at 8:14 pm
Hallo RJoeb,
thanks a lot for the detailed reply. I shall ask my Doctor about IPI.
My brain MET is 1.7cm large. A primary site has not been found. In the last scan a 5mm necrosis was found. I will be having a couple more scans to see the effects of radiation.
-
- June 11, 2014 at 8:14 pm
Hallo RJoeb,
thanks a lot for the detailed reply. I shall ask my Doctor about IPI.
My brain MET is 1.7cm large. A primary site has not been found. In the last scan a 5mm necrosis was found. I will be having a couple more scans to see the effects of radiation.
-
- June 7, 2014 at 10:23 pm
I haven't used any of the BRAF or MEK medications yet, although I am BRAF positive, and my brain metastasis was not my primary. However, I did have a single brain metastasis about 15 months ago, about 2.5 years after my original diagnosis. It was about 2.5-cm in size and was first found on a PET scan (a few days before my annual brain MRI was scheduled). I didn't have any symptoms I was aware of, although in hindsight, I'd had two episodes of localized twitching in my left arm in the six weeks prior to the tumor appearing on the scan that were determined to be focal seizures. The tumor was located in the right side of my brain in the area responsible for left-side motor control. I had also experienced a slight "hitch" in my step that I attributed to a prior surgery. Once I started the steroids before any other treatment, my walking improved. Treatment consisted of a successful craniotomy to remove the tumor. I was diagnosed with the tumor on a Thursday, admitted and started on dexamethasone (steroid) immediately, had an MRI, and stabilized and sent home on Saturday, with a plan for surgery a few days later. I was re-admitted on Monday, had surgery Tuesday, spent the first night in the ICU, the second night in a regular room, and then home on Thursday.
About a month later I had CyberKnife SRS, a single session to treat the tumor bed, and a month after that, I started a four dose course of ipi, that I tolerated well.
Recognizing that there are no perfect answers, I think your doctor's approach is sound. I think there is a time and place for each of these new tools and treatments we have and I think of the BRAF and MEK inhibitors as best used when there is a large tumor burden and as a "bridge" to other therapies, like ipi or the anti-PD-1's, which may take more time to work. Because the anti-PD-1's might be difficult for you to qualify for in a trial setting and you wouldn't be eligible for the EAPs, if anything I'd think ipi might be a better option now than dabrafenib+tafinlar, certainly worth discussing with your doctor.
-
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