› Forums › General Melanoma Community › LEPTO…… PLEASE HELP
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SStamps.
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- May 27, 2015 at 2:20 pm
Hi guys
On 5-5-15 my husband had a CT scan which showed progress and new bone mets and was taken off PD-1 his doctor was rushing all paper work and scans to NIH and they have been very fast to respond…. In the mean time he's been losing feeling in his legs and can not walk up steps….. I could not get him in the house on Friday so we called his doctor at UVA, he said bring him ASAP he is being admitted…. MRI shows a bone lesion in the area of left frontal area with meningeal contact….. As if that was not bad enough he also has melanoma in the spinal nerve roots…. No spinal tap has been done but in the MRI you can see it!!….. I NEED ADVICE, PLEASE HELP (and yes i've read the older posts on here about lepto)
Thank you
Emily
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- May 27, 2015 at 3:11 pm
Oh, Emily. I am so sorry that you and your husband are facing this. I looked back on an earlier post of yours and it was as I remembered, in that he has tried most treatments. NIH is a great place and I am hoping that they get your husband started on an effective treatment rapidly. As you probably know…at this point, there is data to show that everything from ipi, BRAFi combo's and anti-PD1 CAN work in the brain through the influx of cytotoxic T cells they create. I realize that is cold comfort if you have already done these things and you are still in the position you find yourself. But….my thoughts are these…
1. Why did they take him off anti-PD1? If it is not working, I realize there is no real need to continue…but just thinking that at least he would be on something, until they get him on a different treatment. On the plus side, many treatments require a washout period and he is at least moving forward with that.
2. I know that they were doing intrathecal injections of IL2 for leptomeningeal disease at MD Anderson. I don't know the effectiveness, etc.
4. BRAFi can work in the brain. And studies show that folks who responded once to it, can sometimes respond again later. I wonder if this might be tried to at least get some shrinkage of your husband's tumors, if only for a bit until he gets going on something else.
5. There is an anti-LAG3 trials for patients post anti-PD1 however the exclusion does list uncontrolled CNS disease. I have no idea if this would be of help IF they would make an exception.
6. TIL.
7. Radiation to certain areas for shrinkage.
8. Artie has dealt with bone met/spine issues and may have additional ideas.
Probably nothing you hadn't already thought about. Holding you both in my heart. Yours, Celeste
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- May 27, 2015 at 3:11 pm
Oh, Emily. I am so sorry that you and your husband are facing this. I looked back on an earlier post of yours and it was as I remembered, in that he has tried most treatments. NIH is a great place and I am hoping that they get your husband started on an effective treatment rapidly. As you probably know…at this point, there is data to show that everything from ipi, BRAFi combo's and anti-PD1 CAN work in the brain through the influx of cytotoxic T cells they create. I realize that is cold comfort if you have already done these things and you are still in the position you find yourself. But….my thoughts are these…
1. Why did they take him off anti-PD1? If it is not working, I realize there is no real need to continue…but just thinking that at least he would be on something, until they get him on a different treatment. On the plus side, many treatments require a washout period and he is at least moving forward with that.
2. I know that they were doing intrathecal injections of IL2 for leptomeningeal disease at MD Anderson. I don't know the effectiveness, etc.
4. BRAFi can work in the brain. And studies show that folks who responded once to it, can sometimes respond again later. I wonder if this might be tried to at least get some shrinkage of your husband's tumors, if only for a bit until he gets going on something else.
5. There is an anti-LAG3 trials for patients post anti-PD1 however the exclusion does list uncontrolled CNS disease. I have no idea if this would be of help IF they would make an exception.
6. TIL.
7. Radiation to certain areas for shrinkage.
8. Artie has dealt with bone met/spine issues and may have additional ideas.
Probably nothing you hadn't already thought about. Holding you both in my heart. Yours, Celeste
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- May 27, 2015 at 3:11 pm
Oh, Emily. I am so sorry that you and your husband are facing this. I looked back on an earlier post of yours and it was as I remembered, in that he has tried most treatments. NIH is a great place and I am hoping that they get your husband started on an effective treatment rapidly. As you probably know…at this point, there is data to show that everything from ipi, BRAFi combo's and anti-PD1 CAN work in the brain through the influx of cytotoxic T cells they create. I realize that is cold comfort if you have already done these things and you are still in the position you find yourself. But….my thoughts are these…
1. Why did they take him off anti-PD1? If it is not working, I realize there is no real need to continue…but just thinking that at least he would be on something, until they get him on a different treatment. On the plus side, many treatments require a washout period and he is at least moving forward with that.
2. I know that they were doing intrathecal injections of IL2 for leptomeningeal disease at MD Anderson. I don't know the effectiveness, etc.
4. BRAFi can work in the brain. And studies show that folks who responded once to it, can sometimes respond again later. I wonder if this might be tried to at least get some shrinkage of your husband's tumors, if only for a bit until he gets going on something else.
5. There is an anti-LAG3 trials for patients post anti-PD1 however the exclusion does list uncontrolled CNS disease. I have no idea if this would be of help IF they would make an exception.
6. TIL.
7. Radiation to certain areas for shrinkage.
8. Artie has dealt with bone met/spine issues and may have additional ideas.
Probably nothing you hadn't already thought about. Holding you both in my heart. Yours, Celeste
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- May 27, 2015 at 3:35 pm
Emily, I'm sorry to hear about this development–we all fear brain and CNS involvement. If it were me, I'd consider traveling to MDA. I'm not sure if they still do the specialized IL-2 treatment (I recall reading that the doctor (Papa?) retired), but they seemed to be the only institution mentioned for this. MDA also seems to have more lenient requirements for TIL versus NIH. I'd still keep the NIH appointment (particularly given your location), but they are just so selective. (I say this as someone who was once sent home by the NIH). I'd also seriously consider Celeste's suggestion around a refresh with BRAF-MEK (assuming BRAF positive).
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- May 27, 2015 at 3:35 pm
Emily, I'm sorry to hear about this development–we all fear brain and CNS involvement. If it were me, I'd consider traveling to MDA. I'm not sure if they still do the specialized IL-2 treatment (I recall reading that the doctor (Papa?) retired), but they seemed to be the only institution mentioned for this. MDA also seems to have more lenient requirements for TIL versus NIH. I'd still keep the NIH appointment (particularly given your location), but they are just so selective. (I say this as someone who was once sent home by the NIH). I'd also seriously consider Celeste's suggestion around a refresh with BRAF-MEK (assuming BRAF positive).
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- May 27, 2015 at 3:35 pm
Emily, I'm sorry to hear about this development–we all fear brain and CNS involvement. If it were me, I'd consider traveling to MDA. I'm not sure if they still do the specialized IL-2 treatment (I recall reading that the doctor (Papa?) retired), but they seemed to be the only institution mentioned for this. MDA also seems to have more lenient requirements for TIL versus NIH. I'd still keep the NIH appointment (particularly given your location), but they are just so selective. (I say this as someone who was once sent home by the NIH). I'd also seriously consider Celeste's suggestion around a refresh with BRAF-MEK (assuming BRAF positive).
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- May 29, 2015 at 4:57 pm
My husband is being treated for liptomeningeal at MDAnderson. Dr Isabella Glitza is now doing the treatments since Dr Papa retired. Mickey has been receiving treatment for the liptomeningeal since 12-2011.
The phone number to the melanoma department at MDAnderson is 713-792-6800.
Mickey had brain mets (also lung and rib)he did the WBR , Dr Papa showed us where one of the tumors was located and said it was possible Mickey would develop LMD. In November 2011 Mickey's back started to hurt spine MRI showed lepto tumor are(not solid just looked clustered) he had radiation to the area. The day of his last radiation treatment he went to surgery they place an ommaya in to lateral ventricle. They did a flow study then he was admitted to the hospital for induction about 20 days or more. If all goes well they do a treatment every week for 4 weeks then move up to every 2 weeks then so on. As long as CSF is clear of melanoma cells they continue to move up. Mickey has had bumps in the road but now his 4th sixth week is 6-22-15.
You may email me at [email protected] if you have any questions
Blessing to you and your family
Samantha
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- May 29, 2015 at 4:57 pm
My husband is being treated for liptomeningeal at MDAnderson. Dr Isabella Glitza is now doing the treatments since Dr Papa retired. Mickey has been receiving treatment for the liptomeningeal since 12-2011.
The phone number to the melanoma department at MDAnderson is 713-792-6800.
Mickey had brain mets (also lung and rib)he did the WBR , Dr Papa showed us where one of the tumors was located and said it was possible Mickey would develop LMD. In November 2011 Mickey's back started to hurt spine MRI showed lepto tumor are(not solid just looked clustered) he had radiation to the area. The day of his last radiation treatment he went to surgery they place an ommaya in to lateral ventricle. They did a flow study then he was admitted to the hospital for induction about 20 days or more. If all goes well they do a treatment every week for 4 weeks then move up to every 2 weeks then so on. As long as CSF is clear of melanoma cells they continue to move up. Mickey has had bumps in the road but now his 4th sixth week is 6-22-15.
You may email me at [email protected] if you have any questions
Blessing to you and your family
Samantha
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- May 29, 2015 at 4:57 pm
My husband is being treated for liptomeningeal at MDAnderson. Dr Isabella Glitza is now doing the treatments since Dr Papa retired. Mickey has been receiving treatment for the liptomeningeal since 12-2011.
The phone number to the melanoma department at MDAnderson is 713-792-6800.
Mickey had brain mets (also lung and rib)he did the WBR , Dr Papa showed us where one of the tumors was located and said it was possible Mickey would develop LMD. In November 2011 Mickey's back started to hurt spine MRI showed lepto tumor are(not solid just looked clustered) he had radiation to the area. The day of his last radiation treatment he went to surgery they place an ommaya in to lateral ventricle. They did a flow study then he was admitted to the hospital for induction about 20 days or more. If all goes well they do a treatment every week for 4 weeks then move up to every 2 weeks then so on. As long as CSF is clear of melanoma cells they continue to move up. Mickey has had bumps in the road but now his 4th sixth week is 6-22-15.
You may email me at [email protected] if you have any questions
Blessing to you and your family
Samantha
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- May 27, 2015 at 4:36 pm
our doctor has called every doctor near by ( NIH, John Hopkins, Duke, and sloan- Kettering)… alll said NIH was our best bet ( this was before friday)…… Sloan Kettering head dr suggested Paclitaxal/ carboplatin combo due to the urgurgency to do something…. He had a round of that on Sunday before leaving the hospital…. I'm so so devastated.
Emily
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- May 27, 2015 at 4:36 pm
our doctor has called every doctor near by ( NIH, John Hopkins, Duke, and sloan- Kettering)… alll said NIH was our best bet ( this was before friday)…… Sloan Kettering head dr suggested Paclitaxal/ carboplatin combo due to the urgurgency to do something…. He had a round of that on Sunday before leaving the hospital…. I'm so so devastated.
Emily
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- May 27, 2015 at 4:36 pm
our doctor has called every doctor near by ( NIH, John Hopkins, Duke, and sloan- Kettering)… alll said NIH was our best bet ( this was before friday)…… Sloan Kettering head dr suggested Paclitaxal/ carboplatin combo due to the urgurgency to do something…. He had a round of that on Sunday before leaving the hospital…. I'm so so devastated.
Emily
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- May 27, 2015 at 10:44 pm
Hopefully that specific chemo combo will get a quick result to get him through to treatment at NIH. Also since the braf combo had some affect that could be an option as well.
Since the tumors are in the spinal nerve roots I don't think radiation is an option but maybe some type of ablation could be done to keep him walking.
To get a quick strengthening of the bones he could do a dose of zommeta. That might slow down the bone destruction especially with the spine.
Also with all that going on and going to do NIH he needs to do his best to keep physically and mentally strong.
Wow I don't know what else to say but prayers to your husband.
Artie
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- May 27, 2015 at 10:44 pm
Hopefully that specific chemo combo will get a quick result to get him through to treatment at NIH. Also since the braf combo had some affect that could be an option as well.
Since the tumors are in the spinal nerve roots I don't think radiation is an option but maybe some type of ablation could be done to keep him walking.
To get a quick strengthening of the bones he could do a dose of zommeta. That might slow down the bone destruction especially with the spine.
Also with all that going on and going to do NIH he needs to do his best to keep physically and mentally strong.
Wow I don't know what else to say but prayers to your husband.
Artie
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- May 27, 2015 at 10:44 pm
Hopefully that specific chemo combo will get a quick result to get him through to treatment at NIH. Also since the braf combo had some affect that could be an option as well.
Since the tumors are in the spinal nerve roots I don't think radiation is an option but maybe some type of ablation could be done to keep him walking.
To get a quick strengthening of the bones he could do a dose of zommeta. That might slow down the bone destruction especially with the spine.
Also with all that going on and going to do NIH he needs to do his best to keep physically and mentally strong.
Wow I don't know what else to say but prayers to your husband.
Artie
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- May 28, 2015 at 7:35 pm
Yes Anonymous he is being treated at uva and that doc has rushed scans and things to NIH which has apparently been quick to respond. So yes I agree that doc at uva must be good. It sounds like they are trying to get him good enough for the NIH treatment and accelerate the process. At least if I understand what Emily said. It sounds like NIH if he can get better and make it happen and make it through is the silver bullet of hope they are trying to achieve. I hope he can make it through and we hear of his complete cure and doing awesome. He has one really tough road to travel but at least there is the hope. I know the couple times when things got really bad for me the hope of a cure and things getting better some day helped get me through.
Artie
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- May 28, 2015 at 7:35 pm
Yes Anonymous he is being treated at uva and that doc has rushed scans and things to NIH which has apparently been quick to respond. So yes I agree that doc at uva must be good. It sounds like they are trying to get him good enough for the NIH treatment and accelerate the process. At least if I understand what Emily said. It sounds like NIH if he can get better and make it happen and make it through is the silver bullet of hope they are trying to achieve. I hope he can make it through and we hear of his complete cure and doing awesome. He has one really tough road to travel but at least there is the hope. I know the couple times when things got really bad for me the hope of a cure and things getting better some day helped get me through.
Artie
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- May 28, 2015 at 7:35 pm
Yes Anonymous he is being treated at uva and that doc has rushed scans and things to NIH which has apparently been quick to respond. So yes I agree that doc at uva must be good. It sounds like they are trying to get him good enough for the NIH treatment and accelerate the process. At least if I understand what Emily said. It sounds like NIH if he can get better and make it happen and make it through is the silver bullet of hope they are trying to achieve. I hope he can make it through and we hear of his complete cure and doing awesome. He has one really tough road to travel but at least there is the hope. I know the couple times when things got really bad for me the hope of a cure and things getting better some day helped get me through.
Artie
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