› Forums › General Melanoma Community › Question about brain metastases and extra-cranial melanoma
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nickmac56.
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- May 21, 2011 at 3:14 pm
As reported before, my wife, Stage 4 melanoma (lung and skin mets, IPI non-responder), had 2 brain tumors, suffered a stroke from one of the tumors bleeding, had brain surgery to remove the tumors, and is now just getting ready for Cyberknife treatment of the remaining microscopic tumor cells and any other tumors which have popped up in the interim. She had her Cyberknife planning scans on Thursday and we should have the plan and start treatment by next Thursday.
As reported before, my wife, Stage 4 melanoma (lung and skin mets, IPI non-responder), had 2 brain tumors, suffered a stroke from one of the tumors bleeding, had brain surgery to remove the tumors, and is now just getting ready for Cyberknife treatment of the remaining microscopic tumor cells and any other tumors which have popped up in the interim. She had her Cyberknife planning scans on Thursday and we should have the plan and start treatment by next Thursday.
I've been doing a lot of research on treatment options and where we can go once local control has been established in the brain. Most of the clinical trials out there require the patient to be free of brain mets for at least 30 days (some, 30 days from last steroid use) and NIH is 90 days.
The part that is confusing to me is the difference between treatment of the brain mets versus the systemic melanoma. It appears to me that once melanoma has crossed the blood brain barrier – you are really dealing with two separate "diseases". One is melanoma of the body, two is melanoma of the brain. If, in our case, after successful treatment with the Cyberknife, she goes on to the next step of Interleukin-2 (our oncologist's recommendation) and she is one of the fortunate responders and the disease is eliminated in her body (NED) we still have to deal with the melanoma of the brain because the Interleukin-2 does nothing to address that. Any immunological treatments only address melanoma in the body.
To address melanoma of the brain, you continue to use Cyberknife as needed to control local tumor recurrence or in other brain locations, but then you need to pursue some of the experimental chemotherapy regimes which appear to cross the blood brain barrier to wipe it out in the brain. Whole brain radiation does not appear to offer much in the way of success at wiping out the brain metastases, and comes at a high cost in terms of side effects.
Am I surmising this correctly? Regrettably my wife has suffered some cognitive impairment as a result of the stroke and brain surgery so even though she is technically competent to make her own decisions, I need to provide her as much perspective as possible. Her belief right now is that once the Cyberknife treatment is completed and successful, and then she has the Interleukin-2 and it works, she will then be free of the disease (believing there is link between the body and brain melanoma). My take is that if the IL-2 is successful, that is fantastic, but we have to separately address the brain melanoma because it has in fact become it's own separate disease because it's in a "colony" different than the body and what works in the body doesn't affect the brain.
Sorry if this is a confusing question, but would appreciate hearing from those who know more than I about this issue. thanks,
Nick
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- May 21, 2011 at 3:30 pm
Hi Nick, others far more knowledgeable will be able to address this more properly but it's a weekend and those are often slow so here's what I understood:
Some drugs (Temodar, for example) can be useful both in systemic body & brain treatment. But I understood ipi (Yervoy) is also successful in treating brain mets. So there may be several options other than WBR or cyber knife in terms of going after both the "body" melanoma & brain mets.
Lori
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- May 21, 2011 at 3:30 pm
Hi Nick, others far more knowledgeable will be able to address this more properly but it's a weekend and those are often slow so here's what I understood:
Some drugs (Temodar, for example) can be useful both in systemic body & brain treatment. But I understood ipi (Yervoy) is also successful in treating brain mets. So there may be several options other than WBR or cyber knife in terms of going after both the "body" melanoma & brain mets.
Lori
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- May 21, 2011 at 6:16 pm
Nick,
I had this same dilemma when I was first diagnosed stage IV with 2 brain lesions and 5 other mets throughout my body. After debating which should be addressed first (brain mets) and speaking to several met specialist, I decided to have gamma knife procedures first then use the systemic chemo Temodar since it is (somewhat) successful in treating both brain and body metastasises (it is a brain tumor drug that crosses the brain blood barrier)- I hoped that Temodar would have a 'dust pan" effect on taking care of any melanoma debris in the brain.
Fortunately, my body did respond to the drug and both the brain and body lesions were eradicated – this was in May/June of 2005. I stayed on the drug for 16 months in an attempt to insure long term results- so far, so good (I did have a "recurrence"? in '07 of a miniscule brain met – treated with gamma knife again…)
I understand your feeling like your under attack on 2 fronts. This disease does not play nice. I hope the IL-2 works for your wife's case and she gets the relief and NED status she deserves. Providing her with a "realistic" perspective is good in some respects, but do allow her to hope- it's vital as a patient to have it.
Sounds like your researching options. Make sure that you are working with melanoma specialists who know all the latest treatment options.
Best to you both,
Karen
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- May 21, 2011 at 6:16 pm
Nick,
I had this same dilemma when I was first diagnosed stage IV with 2 brain lesions and 5 other mets throughout my body. After debating which should be addressed first (brain mets) and speaking to several met specialist, I decided to have gamma knife procedures first then use the systemic chemo Temodar since it is (somewhat) successful in treating both brain and body metastasises (it is a brain tumor drug that crosses the brain blood barrier)- I hoped that Temodar would have a 'dust pan" effect on taking care of any melanoma debris in the brain.
Fortunately, my body did respond to the drug and both the brain and body lesions were eradicated – this was in May/June of 2005. I stayed on the drug for 16 months in an attempt to insure long term results- so far, so good (I did have a "recurrence"? in '07 of a miniscule brain met – treated with gamma knife again…)
I understand your feeling like your under attack on 2 fronts. This disease does not play nice. I hope the IL-2 works for your wife's case and she gets the relief and NED status she deserves. Providing her with a "realistic" perspective is good in some respects, but do allow her to hope- it's vital as a patient to have it.
Sounds like your researching options. Make sure that you are working with melanoma specialists who know all the latest treatment options.
Best to you both,
Karen
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- May 21, 2011 at 7:45 pm
Thanks Karen, I will be asking about Temodar as it does seem to be a systemic treatment that may have ability to address brain mets. I’ve looked at the clinical trials and most of them require at least thirty days without steroids to be eligible.And of course I provide my wife hope. The challenge of a caregiver, especially one who is dealing with a stroke victim caused by the melanoma is that it puts all the burden on your shoulders to understand the choices and consequences. Now that we are fighting fires on what appears to me to be two separate fronts requiring separate action and success at one (the body) doesn’t mean success at the other (the brain) I’m just trying to figure out the soundest approach. In consultation with oncologist and melanoma specialists. I do have to say though when you tell one your wife has Stage 4 melanoma with skin, lung, and brain mets – and has failed Ipi (Yervoy) they are not exactly clamoring to have you as a patient or participate in a clinical trial. It would screw up their statistics. We were headed back to the National Cancer Institute when this ocurred. Now we are SOL unless we can keep her clear of brain mets for 90 days. That pretty much sucks given some of the body systemic treatments seem promising such as the adaptive cell therapy program combined with IL-2.
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- May 21, 2011 at 7:45 pm
Thanks Karen, I will be asking about Temodar as it does seem to be a systemic treatment that may have ability to address brain mets. I’ve looked at the clinical trials and most of them require at least thirty days without steroids to be eligible.And of course I provide my wife hope. The challenge of a caregiver, especially one who is dealing with a stroke victim caused by the melanoma is that it puts all the burden on your shoulders to understand the choices and consequences. Now that we are fighting fires on what appears to me to be two separate fronts requiring separate action and success at one (the body) doesn’t mean success at the other (the brain) I’m just trying to figure out the soundest approach. In consultation with oncologist and melanoma specialists. I do have to say though when you tell one your wife has Stage 4 melanoma with skin, lung, and brain mets – and has failed Ipi (Yervoy) they are not exactly clamoring to have you as a patient or participate in a clinical trial. It would screw up their statistics. We were headed back to the National Cancer Institute when this ocurred. Now we are SOL unless we can keep her clear of brain mets for 90 days. That pretty much sucks given some of the body systemic treatments seem promising such as the adaptive cell therapy program combined with IL-2.
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- May 21, 2011 at 7:11 pm
Ipi has shown some success in treating brain mets. Here are a few citations:
http://www.ncbi.nlm.nih.gov/pubmed/20216240
http://www.medscape.org/viewarticle/579416
Google "ipilimumab brain" for a bunch more.
Jerry from Cape Cod has had tremendous success with an Ipi brain trial:
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/ipi-week-108
I chose ipi when I had a combined body & brain mets crop up. I had cyberknife first, and then the ipi. I ended up needing craniotomy because one of my brain tumors appeared to be growing and causing problems, but when they removed it, it was all dead tissue. Whether it was an effect of Ipi or radiation necrosis, I don't know. I was just glad it was dead!
Personally, I don't "get" why IL-2 doesn't work in the brain. They say that Ipi works not because the ipi itself crosses the blood-brain barrier, but because the immune cells do. They why don't the T-cells grown by IL-2 help in the brain? But it doesn't seem to work that way, at least for me; I was an "almost complete" responder to IL-2, had surgery to remove the last little subQ, and still showed up with four brain mets just 3 1/2 months after completing treatment.
I have no idea if this helps! I just know it's an angonizing bunch of decisions to have to make.
KatyWI
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- May 21, 2011 at 7:11 pm
Ipi has shown some success in treating brain mets. Here are a few citations:
http://www.ncbi.nlm.nih.gov/pubmed/20216240
http://www.medscape.org/viewarticle/579416
Google "ipilimumab brain" for a bunch more.
Jerry from Cape Cod has had tremendous success with an Ipi brain trial:
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/ipi-week-108
I chose ipi when I had a combined body & brain mets crop up. I had cyberknife first, and then the ipi. I ended up needing craniotomy because one of my brain tumors appeared to be growing and causing problems, but when they removed it, it was all dead tissue. Whether it was an effect of Ipi or radiation necrosis, I don't know. I was just glad it was dead!
Personally, I don't "get" why IL-2 doesn't work in the brain. They say that Ipi works not because the ipi itself crosses the blood-brain barrier, but because the immune cells do. They why don't the T-cells grown by IL-2 help in the brain? But it doesn't seem to work that way, at least for me; I was an "almost complete" responder to IL-2, had surgery to remove the last little subQ, and still showed up with four brain mets just 3 1/2 months after completing treatment.
I have no idea if this helps! I just know it's an angonizing bunch of decisions to have to make.
KatyWI
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- May 22, 2011 at 1:59 am
Hi, I understand what you are going through as a caregiver. My husband tried BRAF and stayed stable for a little while (no improvement, just no new growth). After the cancer started growing, he developed two brain mets that needed to be treated with SRS and we started IPI at the same time. However, he turned out to be a non-responder to that.
The Onc pushed him hard to try Temodar because it does cross on the brain barrier. Yes, I did feel like we are treating two different things…different docs, different outlooks on cancer! Some days were frustrating! And heaven forbid that the docs talk to one another or work as a team…too many egos!! LOL
However, he was able to qualify for e-7080 trial as the latest MRI showed no new growth in the brain. Have you discussed either of these options with your doc?
I keep researching and checking for the latest treatment options so I can help him have a plan B, C and D. Some look promising, but time is always an issue. I take care of most everything now, all he has to worry about is getting better.
Hope you find a treatment option that works for your wife.
Jan
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- May 22, 2011 at 1:59 am
Hi, I understand what you are going through as a caregiver. My husband tried BRAF and stayed stable for a little while (no improvement, just no new growth). After the cancer started growing, he developed two brain mets that needed to be treated with SRS and we started IPI at the same time. However, he turned out to be a non-responder to that.
The Onc pushed him hard to try Temodar because it does cross on the brain barrier. Yes, I did feel like we are treating two different things…different docs, different outlooks on cancer! Some days were frustrating! And heaven forbid that the docs talk to one another or work as a team…too many egos!! LOL
However, he was able to qualify for e-7080 trial as the latest MRI showed no new growth in the brain. Have you discussed either of these options with your doc?
I keep researching and checking for the latest treatment options so I can help him have a plan B, C and D. Some look promising, but time is always an issue. I take care of most everything now, all he has to worry about is getting better.
Hope you find a treatment option that works for your wife.
Jan
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- May 22, 2011 at 5:27 pm
Thank you Jan – I looked up the E7080 trials on clinicaltrials.gov and the standard exclusions apply, which is the probem with brain metasteses:
Subjects with brain metastases will be eligible if they have undergone complete surgical excision and are more then 1 month post surgery with no radiographic evidence of disease recurrence in the brain or have undergone stereotactic radio surgery (gamma knife procedure) and are more then 1 month post procedure and with no radiographic evidence of disease progression in the brain; and are asymptomatic, and discontinued corticosteroid treatment at least 30 days prior starting treatment."
So it could be a viable clinical trial after she completes the SRS and is 30 days post steroids and is then clear of metastases.
Meanwhile the disease continues to grow in her body….
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- May 22, 2011 at 5:27 pm
Thank you Jan – I looked up the E7080 trials on clinicaltrials.gov and the standard exclusions apply, which is the probem with brain metasteses:
Subjects with brain metastases will be eligible if they have undergone complete surgical excision and are more then 1 month post surgery with no radiographic evidence of disease recurrence in the brain or have undergone stereotactic radio surgery (gamma knife procedure) and are more then 1 month post procedure and with no radiographic evidence of disease progression in the brain; and are asymptomatic, and discontinued corticosteroid treatment at least 30 days prior starting treatment."
So it could be a viable clinical trial after she completes the SRS and is 30 days post steroids and is then clear of metastases.
Meanwhile the disease continues to grow in her body….
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- May 22, 2011 at 3:48 am
Has your wife been tested for the B-raf mutation? If she is positive then you need to read Nic's post. This is a clinical trial for those who are b-raf positive with brain mets. Not sure about having to be off of steroids for 30 days.
Your wife is fortunate to have you doing all of this research.
Linda
Stage IV
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- May 22, 2011 at 3:48 am
Has your wife been tested for the B-raf mutation? If she is positive then you need to read Nic's post. This is a clinical trial for those who are b-raf positive with brain mets. Not sure about having to be off of steroids for 30 days.
Your wife is fortunate to have you doing all of this research.
Linda
Stage IV
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- May 22, 2011 at 5:55 am
what is B-raf? my mother had a stroke in July – no source found. in October a nuerologist says "we need to look at that spot again." my mom says, "what spot?" apparently a spot near the stroke. i think the melanoma caused the stroke. the Mayo clinic said they have never seen anything like this……..sounds more common than we thought?
julie b
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- May 22, 2011 at 5:55 am
what is B-raf? my mother had a stroke in July – no source found. in October a nuerologist says "we need to look at that spot again." my mom says, "what spot?" apparently a spot near the stroke. i think the melanoma caused the stroke. the Mayo clinic said they have never seen anything like this……..sounds more common than we thought?
julie b
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- May 22, 2011 at 10:33 pm
http://www.moffitt.org/CCJRoot/v2n5/article3.html
Hopefully this article might help your understanding
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- May 22, 2011 at 10:33 pm
http://www.moffitt.org/CCJRoot/v2n5/article3.html
Hopefully this article might help your understanding
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