› Forums › General Melanoma Community › What I learned today about melanoma of the spinal fluid
- This topic has 21 replies, 5 voices, and was last updated 12 years, 5 months ago by
JerryfromFauq.
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- October 31, 2011 at 3:11 am
My wife's hydrocephalus is caused by melanoma cells in the spinal fluid accumulating at the base of the brain, and clogging up the pathways the spinal fluid travels. The radiation oncologist described it as snow – a light dusting – but enough to prevent the fluid from draining. Since it's produced in the brain, if you plug up the drain – it's going to expand and press the brain – causing her headaches, nausea and instability. So they want to use whole brain radiation to try to melt that snow away.
My wife's hydrocephalus is caused by melanoma cells in the spinal fluid accumulating at the base of the brain, and clogging up the pathways the spinal fluid travels. The radiation oncologist described it as snow – a light dusting – but enough to prevent the fluid from draining. Since it's produced in the brain, if you plug up the drain – it's going to expand and press the brain – causing her headaches, nausea and instability. So they want to use whole brain radiation to try to melt that snow away. The radiation onc isn't concerned about the two solid mass tumors right now – they might get handled by the whole brain or she will spot treat them later. She is thinking twenty treatments, daily. Low and slow. In the interim, she is going to talk with the neurosurgeon tomorrow, and discuss a shunt to drain away the excess spinal fluid, thus relieving my wife of the headaches. But where to put that fluid is the question. If it's filled with melanoma cells, probably don't want to dump it in the liver or other part of the body. If it is expelled outside the body there is a risk of infection. So that is a big discussion tomorrow.
They don't think a lumbar tap is in order as a relief valve because of the chance of a pressure differential and if the brain "drops" as a result that would not be a good thing.
What is still unknown is how to address spinal fluid cancer. The whole brain radiation will melt away the cancer sitting in the pathways clogging things up. But the free floating cells are an issue. If it can't be handled the same thing will happen again soon – and we only get one shot at whole brain radiation. So what chemo to do and how – continue the intravenous Abraxane or switch chemo and pump it direct into spinal fluid through the shunt or Ommaya reservoir to the ventricles? The evidence is not clear on what choice should be made.
We have a great medical team. The radiation oncologist – our regular one who we just saw Friday for the brain MRI – came into the office to look at the CT scans and review the Friday MRI in depth with the radiologist – and called me Sunday afternoon. She's a rock star. Apparently we are getting one of the top neurosurgeons in the Northwest. We already love our oncology team (we had the on call doc this weekend and he was terrific). Unfortunately my wife is in no position to understand or participate in discussions about treatment. So I have to use my best judgment, based on our prior discussions.
Nick
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- October 31, 2011 at 4:15 am
If you search for posts by Amy Busby, she also had melanoma in the spinal fluid. She did some type of intercranial IL-2. I don't remember the exact terminology or methods, but she definitely comes to mind when you discuss your wife. You might seek out her posts of the last year or so (she's been on the BB many years, but I believe theses posts would be in the last year) to get more information on her type of treatment. She was treated at MD Anderson in Houston.
Best wishes,
Janner
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- October 31, 2011 at 4:15 am
If you search for posts by Amy Busby, she also had melanoma in the spinal fluid. She did some type of intercranial IL-2. I don't remember the exact terminology or methods, but she definitely comes to mind when you discuss your wife. You might seek out her posts of the last year or so (she's been on the BB many years, but I believe theses posts would be in the last year) to get more information on her type of treatment. She was treated at MD Anderson in Houston.
Best wishes,
Janner
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- October 31, 2011 at 4:15 am
If you search for posts by Amy Busby, she also had melanoma in the spinal fluid. She did some type of intercranial IL-2. I don't remember the exact terminology or methods, but she definitely comes to mind when you discuss your wife. You might seek out her posts of the last year or so (she's been on the BB many years, but I believe theses posts would be in the last year) to get more information on her type of treatment. She was treated at MD Anderson in Houston.
Best wishes,
Janner
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- October 31, 2011 at 7:20 am
FROM Amy's writings:
Posted Jun 13, 2010 12:52pm induction phase almost over
The treatment plan that Dr. Papa has developed starts with an
induction phase of Il2 given in the intrathecal port for a 4 week schedule, starting off every day and tapering down to 3x a week, then 2x, then finally once a week. Then I get to go home and just come stay at MDA one day a week for an IL2 dose as a maintanence. So far we are on schedule! I'll have several MRIs and other tests this week, and probably one dose.Side effects?
I'd say it's easier than high dose IL2 and certainly better than biochem, which kicked me ass. Mainly I have headaches, naseua / vomitting, degraded vision (nearsightedness), fatigue, and some cognitive stuff (scatterbrained, memory problemns, etc.). Bad news is the headaches are the pressure / spinal tap type which can be excruciating. For the most part it's manageable with meds. It's obviously worse the day & night of the dose but improves as time goes by. After the 5th or 6th day I am mostly okay as long as I am not too active. Then it's time to do it all ovr again.
I think it's mainly active in the CNS only this way – that's why no itchy peeling skin or fluid retention.mainlining IL2 straight to the brain is NO fun. – dr. papadoupolous at MDA. Dr.Papa's the only one, when he croaks we're all screwed, he's got to be in his late 60s or so, maybe 70s, he developed it a long time ago – maybe early 90s.
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- October 31, 2011 at 1:12 pm
thank you Jerry – I had seem some of her prevous posts but not this one. Not exactly a ringing endorsement of the procedure, especially considering the outcome. In all my research I have found no statistical evidence that this procedure has any greater effectiveness than standard chemotherapy or immunotherapy. We are at a stage right now where my wife's ability to tolerate this kind of treatment is in question. She can clearly tolerate the whole brain radiation which is more of a palliative short term measure to reduce the clogging and ease the pressure. So we are nearing that point of evaluating treatments based not on success at beating melanoma, but symtom relief.
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- October 31, 2011 at 1:12 pm
thank you Jerry – I had seem some of her prevous posts but not this one. Not exactly a ringing endorsement of the procedure, especially considering the outcome. In all my research I have found no statistical evidence that this procedure has any greater effectiveness than standard chemotherapy or immunotherapy. We are at a stage right now where my wife's ability to tolerate this kind of treatment is in question. She can clearly tolerate the whole brain radiation which is more of a palliative short term measure to reduce the clogging and ease the pressure. So we are nearing that point of evaluating treatments based not on success at beating melanoma, but symtom relief.
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- October 31, 2011 at 8:10 pm
The procedure was rough, but successful. Amy was promised by GSk that if she had clear brai and spinal results for 2 months she couod re-enter the anti-BRAF usage. She obrained clear brain and spinal fluid for two months and then GSK refused to allow her back onto their produdt. Her brain and spinal fluid was sill clear on melanoma when she died from the tumors that were not treated with a restart of the GSk drug, which had been controlled before she was removed from the GSK product due to the brain and spinal mets. Amy believed that a restart of the promised GSK anti-BRAF drugs woould have kept her alive longer. She told me in a telephone conversation, "i've done all they said they wanted done, met their requirements and they won't keep their word. I thnk they are afraid it wil look bad if I were to die while still taking their drugs, so they won't let me have them to help like they were doing before the brain mets."
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- October 31, 2011 at 8:10 pm
The procedure was rough, but successful. Amy was promised by GSk that if she had clear brai and spinal results for 2 months she couod re-enter the anti-BRAF usage. She obrained clear brain and spinal fluid for two months and then GSK refused to allow her back onto their produdt. Her brain and spinal fluid was sill clear on melanoma when she died from the tumors that were not treated with a restart of the GSk drug, which had been controlled before she was removed from the GSK product due to the brain and spinal mets. Amy believed that a restart of the promised GSK anti-BRAF drugs woould have kept her alive longer. She told me in a telephone conversation, "i've done all they said they wanted done, met their requirements and they won't keep their word. I thnk they are afraid it wil look bad if I were to die while still taking their drugs, so they won't let me have them to help like they were doing before the brain mets."
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- October 31, 2011 at 8:10 pm
The procedure was rough, but successful. Amy was promised by GSk that if she had clear brai and spinal results for 2 months she couod re-enter the anti-BRAF usage. She obrained clear brain and spinal fluid for two months and then GSK refused to allow her back onto their produdt. Her brain and spinal fluid was sill clear on melanoma when she died from the tumors that were not treated with a restart of the GSk drug, which had been controlled before she was removed from the GSK product due to the brain and spinal mets. Amy believed that a restart of the promised GSK anti-BRAF drugs woould have kept her alive longer. She told me in a telephone conversation, "i've done all they said they wanted done, met their requirements and they won't keep their word. I thnk they are afraid it wil look bad if I were to die while still taking their drugs, so they won't let me have them to help like they were doing before the brain mets."
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- October 31, 2011 at 1:12 pm
thank you Jerry – I had seem some of her prevous posts but not this one. Not exactly a ringing endorsement of the procedure, especially considering the outcome. In all my research I have found no statistical evidence that this procedure has any greater effectiveness than standard chemotherapy or immunotherapy. We are at a stage right now where my wife's ability to tolerate this kind of treatment is in question. She can clearly tolerate the whole brain radiation which is more of a palliative short term measure to reduce the clogging and ease the pressure. So we are nearing that point of evaluating treatments based not on success at beating melanoma, but symtom relief.
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- October 31, 2011 at 7:20 am
FROM Amy's writings:
Posted Jun 13, 2010 12:52pm induction phase almost over
The treatment plan that Dr. Papa has developed starts with an
induction phase of Il2 given in the intrathecal port for a 4 week schedule, starting off every day and tapering down to 3x a week, then 2x, then finally once a week. Then I get to go home and just come stay at MDA one day a week for an IL2 dose as a maintanence. So far we are on schedule! I'll have several MRIs and other tests this week, and probably one dose.Side effects?
I'd say it's easier than high dose IL2 and certainly better than biochem, which kicked me ass. Mainly I have headaches, naseua / vomitting, degraded vision (nearsightedness), fatigue, and some cognitive stuff (scatterbrained, memory problemns, etc.). Bad news is the headaches are the pressure / spinal tap type which can be excruciating. For the most part it's manageable with meds. It's obviously worse the day & night of the dose but improves as time goes by. After the 5th or 6th day I am mostly okay as long as I am not too active. Then it's time to do it all ovr again.
I think it's mainly active in the CNS only this way – that's why no itchy peeling skin or fluid retention.mainlining IL2 straight to the brain is NO fun. – dr. papadoupolous at MDA. Dr.Papa's the only one, when he croaks we're all screwed, he's got to be in his late 60s or so, maybe 70s, he developed it a long time ago – maybe early 90s.
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- October 31, 2011 at 7:20 am
FROM Amy's writings:
Posted Jun 13, 2010 12:52pm induction phase almost over
The treatment plan that Dr. Papa has developed starts with an
induction phase of Il2 given in the intrathecal port for a 4 week schedule, starting off every day and tapering down to 3x a week, then 2x, then finally once a week. Then I get to go home and just come stay at MDA one day a week for an IL2 dose as a maintanence. So far we are on schedule! I'll have several MRIs and other tests this week, and probably one dose.Side effects?
I'd say it's easier than high dose IL2 and certainly better than biochem, which kicked me ass. Mainly I have headaches, naseua / vomitting, degraded vision (nearsightedness), fatigue, and some cognitive stuff (scatterbrained, memory problemns, etc.). Bad news is the headaches are the pressure / spinal tap type which can be excruciating. For the most part it's manageable with meds. It's obviously worse the day & night of the dose but improves as time goes by. After the 5th or 6th day I am mostly okay as long as I am not too active. Then it's time to do it all ovr again.
I think it's mainly active in the CNS only this way – that's why no itchy peeling skin or fluid retention.mainlining IL2 straight to the brain is NO fun. – dr. papadoupolous at MDA. Dr.Papa's the only one, when he croaks we're all screwed, he's got to be in his late 60s or so, maybe 70s, he developed it a long time ago – maybe early 90s.
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- October 31, 2011 at 4:36 am
Nick, I am very sorry to read the latest developments.
It sounds like the team that you are dealing with is competent and is doing everything medically possible for your wife. Therefore, I feel that you can have confidence that in their recommendations.
Take care
Frank from Australia
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- October 31, 2011 at 1:07 pm
thank you Frank. I'm also really glad they have a relationship with my wife and I believe will balance extraordinary measures which impair life quality against reasonable measures. The idea of subjecting my wife to the direct chemo or IL-2 to the spinal fluid which has a remote possibility of working is frightening. Of course without it, the path is confirmed, but I think it's the path we are going anyway. So as the caregiver you have to make sure you ask the important questions.
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- October 31, 2011 at 1:07 pm
thank you Frank. I'm also really glad they have a relationship with my wife and I believe will balance extraordinary measures which impair life quality against reasonable measures. The idea of subjecting my wife to the direct chemo or IL-2 to the spinal fluid which has a remote possibility of working is frightening. Of course without it, the path is confirmed, but I think it's the path we are going anyway. So as the caregiver you have to make sure you ask the important questions.
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- October 31, 2011 at 1:07 pm
thank you Frank. I'm also really glad they have a relationship with my wife and I believe will balance extraordinary measures which impair life quality against reasonable measures. The idea of subjecting my wife to the direct chemo or IL-2 to the spinal fluid which has a remote possibility of working is frightening. Of course without it, the path is confirmed, but I think it's the path we are going anyway. So as the caregiver you have to make sure you ask the important questions.
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- October 31, 2011 at 4:36 am
Nick, I am very sorry to read the latest developments.
It sounds like the team that you are dealing with is competent and is doing everything medically possible for your wife. Therefore, I feel that you can have confidence that in their recommendations.
Take care
Frank from Australia
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- October 31, 2011 at 4:36 am
Nick, I am very sorry to read the latest developments.
It sounds like the team that you are dealing with is competent and is doing everything medically possible for your wife. Therefore, I feel that you can have confidence that in their recommendations.
Take care
Frank from Australia
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- October 31, 2011 at 4:01 pm
I am so sorry that Meagan and you are going through all of this melanoma horror…I am glad that you have an awesome team. It makes a huge difference. My gut feeling from reading all of your posts is that you two are so close, that any decision you make for Meagan's treatment will be the one that she would have chosen. Everyone should have a caretaker like you!
Cristy
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- October 31, 2011 at 4:01 pm
I am so sorry that Meagan and you are going through all of this melanoma horror…I am glad that you have an awesome team. It makes a huge difference. My gut feeling from reading all of your posts is that you two are so close, that any decision you make for Meagan's treatment will be the one that she would have chosen. Everyone should have a caretaker like you!
Cristy
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- October 31, 2011 at 4:01 pm
I am so sorry that Meagan and you are going through all of this melanoma horror…I am glad that you have an awesome team. It makes a huge difference. My gut feeling from reading all of your posts is that you two are so close, that any decision you make for Meagan's treatment will be the one that she would have chosen. Everyone should have a caretaker like you!
Cristy
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