› Forums › General Melanoma Community › brain mets and response using ipi
- This topic has 24 replies, 7 voices, and was last updated 10 years, 1 month ago by
Bubbles.
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- April 1, 2014 at 9:56 pm
I have been diagnosed with multiple brain mets and told that gamma knife is not an option. Therefore was wondering whether anyone had been a complete responder just using ipi?
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- April 2, 2014 at 10:54 am
The short answer is, yes, ipi does work on brain mets but no, I don't know anybody who has used ipi ONLY for treating brain mets.
The problem is that melanoma tumors anywhere in your body tend to bleed. When that happens in your body, it's usually not a big deal. However, if brain mets bleed, that's called a stroke and sstrokes can cause permanent brain damage. So most doctors treat brain tumors much more quickly and aggressively than they treat tumors elsewhere in your body. Ipi works in about 20% of the people who take it. When it works, it usually takes several months to have an effect. So given the risk of stroke, using ipi alone to treat brain mets is not a good idea.
It may be true that gamma knife is not the appropriate treatment for you. However, there may be other quick-acting options available. If you tell us why you are not considered to be a condidate for gamma knife, we may be able to suggest something else.
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- April 2, 2014 at 3:51 pm
I was told that gamma knife was not an option as I have multiple mets scattered all over my brain. Proton stuff Is not an option as not available in the UK and oncologist said that wanted to save wbr until I needed it. They also don’t operate here cos have mets in the body xx -
- April 2, 2014 at 4:24 pm
Dear Anonymous
This is a difficult problem. But there are some answers and there is new hope.
1) The use of gamma knife (stereotactic radiosurgery) depends on the number, size and location of the tumors. Some radiotherapists will treat multiple lesions i.e. 12 or more. You should have access to a radiotherapist with the latest information.
2) The presence of mets in other areas does not prevent using ipilimumab. In fact the response in the rest of the body usually corresponds with the effect on the brain mets. The risk of bleeding is not a reason to forgo using systemic treatments including ipi.
3) Radiation and ipi can have a synergistic effect.
4) Depending on the BRAF staus of your tumor, BRAF inhibitors may be effective. That is an important avenue to explore.
Here is a link to a recent review of current therapies for melanoma brain mets:http://Cancer Control. 2013 Oct;20(4):298-306
Finally this is a complex problem and this is a good place to find resources. I think that no one on this forum can tell you exactly what to do. That is a discussion you should have with your doctor. We are here to support you no matter what.
Good Luck Brent Morris
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- April 2, 2014 at 4:24 pm
Dear Anonymous
This is a difficult problem. But there are some answers and there is new hope.
1) The use of gamma knife (stereotactic radiosurgery) depends on the number, size and location of the tumors. Some radiotherapists will treat multiple lesions i.e. 12 or more. You should have access to a radiotherapist with the latest information.
2) The presence of mets in other areas does not prevent using ipilimumab. In fact the response in the rest of the body usually corresponds with the effect on the brain mets. The risk of bleeding is not a reason to forgo using systemic treatments including ipi.
3) Radiation and ipi can have a synergistic effect.
4) Depending on the BRAF staus of your tumor, BRAF inhibitors may be effective. That is an important avenue to explore.
Here is a link to a recent review of current therapies for melanoma brain mets:http://Cancer Control. 2013 Oct;20(4):298-306
Finally this is a complex problem and this is a good place to find resources. I think that no one on this forum can tell you exactly what to do. That is a discussion you should have with your doctor. We are here to support you no matter what.
Good Luck Brent Morris
-
- April 2, 2014 at 4:24 pm
Dear Anonymous
This is a difficult problem. But there are some answers and there is new hope.
1) The use of gamma knife (stereotactic radiosurgery) depends on the number, size and location of the tumors. Some radiotherapists will treat multiple lesions i.e. 12 or more. You should have access to a radiotherapist with the latest information.
2) The presence of mets in other areas does not prevent using ipilimumab. In fact the response in the rest of the body usually corresponds with the effect on the brain mets. The risk of bleeding is not a reason to forgo using systemic treatments including ipi.
3) Radiation and ipi can have a synergistic effect.
4) Depending on the BRAF staus of your tumor, BRAF inhibitors may be effective. That is an important avenue to explore.
Here is a link to a recent review of current therapies for melanoma brain mets:http://Cancer Control. 2013 Oct;20(4):298-306
Finally this is a complex problem and this is a good place to find resources. I think that no one on this forum can tell you exactly what to do. That is a discussion you should have with your doctor. We are here to support you no matter what.
Good Luck Brent Morris
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- April 2, 2014 at 3:51 pm
I was told that gamma knife was not an option as I have multiple mets scattered all over my brain. Proton stuff Is not an option as not available in the UK and oncologist said that wanted to save wbr until I needed it. They also don’t operate here cos have mets in the body xx -
- April 2, 2014 at 3:51 pm
I was told that gamma knife was not an option as I have multiple mets scattered all over my brain. Proton stuff Is not an option as not available in the UK and oncologist said that wanted to save wbr until I needed it. They also don’t operate here cos have mets in the body xx -
- April 2, 2014 at 5:50 pm
As a generalization I'm not sure how helpful your comments about brain mets and strokes are. Two of the brain mets I had several years ago bled at different times (albeit slowly). Neither was ever characterized as representing a danger of a stroke, either before treatment (one was suspected to be bleeding and yet was in a 'watch and wait mode' since I had had radiation once already) nor after treatment. My radiology reports to date still note evidence of prior hemmorage for one tumor, as well as one cavity having a coating of (old) hemosiderin to this day.
I don't know whether in some cases a brain met bleeding = stroke, but definitely not in all cases and definitely not in mine. And my radiation oncologists never ever uttered the word or concept as a warning or concern. So I obviously would feel that this is an unnecessary and alarming concept to talk about for somebody with brain mets. There is plenty of reason to treat brain mets quickly, without the word "stroke" entering the picture, and I'm not really clear applies very much in this situation anyway.
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- April 2, 2014 at 5:50 pm
As a generalization I'm not sure how helpful your comments about brain mets and strokes are. Two of the brain mets I had several years ago bled at different times (albeit slowly). Neither was ever characterized as representing a danger of a stroke, either before treatment (one was suspected to be bleeding and yet was in a 'watch and wait mode' since I had had radiation once already) nor after treatment. My radiology reports to date still note evidence of prior hemmorage for one tumor, as well as one cavity having a coating of (old) hemosiderin to this day.
I don't know whether in some cases a brain met bleeding = stroke, but definitely not in all cases and definitely not in mine. And my radiation oncologists never ever uttered the word or concept as a warning or concern. So I obviously would feel that this is an unnecessary and alarming concept to talk about for somebody with brain mets. There is plenty of reason to treat brain mets quickly, without the word "stroke" entering the picture, and I'm not really clear applies very much in this situation anyway.
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- April 2, 2014 at 5:50 pm
As a generalization I'm not sure how helpful your comments about brain mets and strokes are. Two of the brain mets I had several years ago bled at different times (albeit slowly). Neither was ever characterized as representing a danger of a stroke, either before treatment (one was suspected to be bleeding and yet was in a 'watch and wait mode' since I had had radiation once already) nor after treatment. My radiology reports to date still note evidence of prior hemmorage for one tumor, as well as one cavity having a coating of (old) hemosiderin to this day.
I don't know whether in some cases a brain met bleeding = stroke, but definitely not in all cases and definitely not in mine. And my radiation oncologists never ever uttered the word or concept as a warning or concern. So I obviously would feel that this is an unnecessary and alarming concept to talk about for somebody with brain mets. There is plenty of reason to treat brain mets quickly, without the word "stroke" entering the picture, and I'm not really clear applies very much in this situation anyway.
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- April 2, 2014 at 6:36 pm
It's natural that we are all informed by our personal experiences more than by anything else. In my case, my brother had a stroke first. Then it was diagnosed as a hemmoragic stroke (as opposed to the more common ischemic stroke). The next day, the doctors determined that the stroke was caused by a bleeding brain tumor. Two days after that, that tumor was disgnosed as melanoma. Then the radiation oncologist insisted on doing WBR on an emergency basis (bringing the techs in nights and weekends) because he was afraid that one of my bother's other 4 brain mets would start to bleed at any moment and cause more damage.
As with everything else melanoma, different people are different. I'm delighted that the hemmoragic stroke you had was relatively mild and did not cause permanent brain damage. You were lucky. My brother's stroke must have been worse because it did cause some permanent brain damage.
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- April 2, 2014 at 6:36 pm
It's natural that we are all informed by our personal experiences more than by anything else. In my case, my brother had a stroke first. Then it was diagnosed as a hemmoragic stroke (as opposed to the more common ischemic stroke). The next day, the doctors determined that the stroke was caused by a bleeding brain tumor. Two days after that, that tumor was disgnosed as melanoma. Then the radiation oncologist insisted on doing WBR on an emergency basis (bringing the techs in nights and weekends) because he was afraid that one of my bother's other 4 brain mets would start to bleed at any moment and cause more damage.
As with everything else melanoma, different people are different. I'm delighted that the hemmoragic stroke you had was relatively mild and did not cause permanent brain damage. You were lucky. My brother's stroke must have been worse because it did cause some permanent brain damage.
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- April 2, 2014 at 6:36 pm
It's natural that we are all informed by our personal experiences more than by anything else. In my case, my brother had a stroke first. Then it was diagnosed as a hemmoragic stroke (as opposed to the more common ischemic stroke). The next day, the doctors determined that the stroke was caused by a bleeding brain tumor. Two days after that, that tumor was disgnosed as melanoma. Then the radiation oncologist insisted on doing WBR on an emergency basis (bringing the techs in nights and weekends) because he was afraid that one of my bother's other 4 brain mets would start to bleed at any moment and cause more damage.
As with everything else melanoma, different people are different. I'm delighted that the hemmoragic stroke you had was relatively mild and did not cause permanent brain damage. You were lucky. My brother's stroke must have been worse because it did cause some permanent brain damage.
-
- April 2, 2014 at 10:54 am
The short answer is, yes, ipi does work on brain mets but no, I don't know anybody who has used ipi ONLY for treating brain mets.
The problem is that melanoma tumors anywhere in your body tend to bleed. When that happens in your body, it's usually not a big deal. However, if brain mets bleed, that's called a stroke and sstrokes can cause permanent brain damage. So most doctors treat brain tumors much more quickly and aggressively than they treat tumors elsewhere in your body. Ipi works in about 20% of the people who take it. When it works, it usually takes several months to have an effect. So given the risk of stroke, using ipi alone to treat brain mets is not a good idea.
It may be true that gamma knife is not the appropriate treatment for you. However, there may be other quick-acting options available. If you tell us why you are not considered to be a condidate for gamma knife, we may be able to suggest something else.
-
- April 2, 2014 at 10:54 am
The short answer is, yes, ipi does work on brain mets but no, I don't know anybody who has used ipi ONLY for treating brain mets.
The problem is that melanoma tumors anywhere in your body tend to bleed. When that happens in your body, it's usually not a big deal. However, if brain mets bleed, that's called a stroke and sstrokes can cause permanent brain damage. So most doctors treat brain tumors much more quickly and aggressively than they treat tumors elsewhere in your body. Ipi works in about 20% of the people who take it. When it works, it usually takes several months to have an effect. So given the risk of stroke, using ipi alone to treat brain mets is not a good idea.
It may be true that gamma knife is not the appropriate treatment for you. However, there may be other quick-acting options available. If you tell us why you are not considered to be a condidate for gamma knife, we may be able to suggest something else.
-
- April 3, 2014 at 12:53 am
Hi Anonymous,
So sorry you are having to pose this question. It is so important when giving advice to be super clear about whether one is just stating their personal experience vs what is proven out by the data. Kyle and I have survived brain mets and certainly have our own personal stories in that arena. Kyle is a real trooper and has dealt with much more than I. But, we both work hard to make it clear when we are telling our tales…vs reporting the data that is out there. On the personal level, I was treated with SRS. I then participated in a Nivolumab trial for NED patients and continue to be NED. I have not taken ipi. However, the data is very clear that ipi and the anti-PD1 drugs as well as the BRAF inhibitors work as well in the brain as they do in the body. You do have options. You need not be afraid that systemic treatments will make your condition worse. They may be your best chance! Here are some articles I have posted on my blog addressing those very things:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/overview-of-treatments-for-melanoma.html An overview of treatments for Brain Mets
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html A report on BRAF inhibitors in general with articles about how they work in the brain
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/ipi-and-radiationa-good-combo-for.html Perhaps more specific to your question…an article about how ipi, esp when combined with radiation, works in the brain and elsewhere.
Hang in there. I think you have options. Yours, Celeste
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- April 3, 2014 at 12:53 am
Hi Anonymous,
So sorry you are having to pose this question. It is so important when giving advice to be super clear about whether one is just stating their personal experience vs what is proven out by the data. Kyle and I have survived brain mets and certainly have our own personal stories in that arena. Kyle is a real trooper and has dealt with much more than I. But, we both work hard to make it clear when we are telling our tales…vs reporting the data that is out there. On the personal level, I was treated with SRS. I then participated in a Nivolumab trial for NED patients and continue to be NED. I have not taken ipi. However, the data is very clear that ipi and the anti-PD1 drugs as well as the BRAF inhibitors work as well in the brain as they do in the body. You do have options. You need not be afraid that systemic treatments will make your condition worse. They may be your best chance! Here are some articles I have posted on my blog addressing those very things:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/overview-of-treatments-for-melanoma.html An overview of treatments for Brain Mets
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html A report on BRAF inhibitors in general with articles about how they work in the brain
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/ipi-and-radiationa-good-combo-for.html Perhaps more specific to your question…an article about how ipi, esp when combined with radiation, works in the brain and elsewhere.
Hang in there. I think you have options. Yours, Celeste
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- April 3, 2014 at 12:53 am
Hi Anonymous,
So sorry you are having to pose this question. It is so important when giving advice to be super clear about whether one is just stating their personal experience vs what is proven out by the data. Kyle and I have survived brain mets and certainly have our own personal stories in that arena. Kyle is a real trooper and has dealt with much more than I. But, we both work hard to make it clear when we are telling our tales…vs reporting the data that is out there. On the personal level, I was treated with SRS. I then participated in a Nivolumab trial for NED patients and continue to be NED. I have not taken ipi. However, the data is very clear that ipi and the anti-PD1 drugs as well as the BRAF inhibitors work as well in the brain as they do in the body. You do have options. You need not be afraid that systemic treatments will make your condition worse. They may be your best chance! Here are some articles I have posted on my blog addressing those very things:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/overview-of-treatments-for-melanoma.html An overview of treatments for Brain Mets
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html A report on BRAF inhibitors in general with articles about how they work in the brain
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/ipi-and-radiationa-good-combo-for.html Perhaps more specific to your question…an article about how ipi, esp when combined with radiation, works in the brain and elsewhere.
Hang in there. I think you have options. Yours, Celeste
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