Andrew1725

Rob, 

Thank you so much For these and other updates and I apologize for any typo errors or the like as I am working off of of one eye due to symptoms of the the LMD. I am I inspired by your continued fight with Adriana and despite all your obvious frustrations and roadblocks and I think you guys are really doing it right and striking a great balance between palliative care and doing what has worked in the past for a cure. 

As for for me, I continue with the Ipi/Nivo combo with my 4th of those treatments to come shortly and scans to follow after to try to evaluate the effectiveness. I'm on dexamethasone to protect me from swelling and Keppra for anti-Seizur e. My main fight continues to be pain from spinal mets, but I'm doing mostly well in that regard with narcotic pain meds. Also had a procedure about 3 weeks ago to drill a burr hole in skull to relieve pressure in brain which neurosurgeon was very pleased with results. So happy that you guys ar e battling hard and winning some victories. 

All th best, Andrew

Rob, 

Thank you so much For these and other updates and I apologize for any typo errors or the like as I am working off of of one eye due to symptoms of the the LMD. I am I inspired by your continued fight with Adriana and despite all your obvious frustrations and roadblocks and I think you guys are really doing it right and striking a great balance between palliative care and doing what has worked in the past for a cure. 

As for for me, I continue with the Ipi/Nivo combo with my 4th of those treatments to come shortly and scans to follow after to try to evaluate the effectiveness. I'm on dexamethasone to protect me from swelling and Keppra for anti-Seizur e. My main fight continues to be pain from spinal mets, but I'm doing mostly well in that regard with narcotic pain meds. Also had a procedure about 3 weeks ago to drill a burr hole in skull to relieve pressure in brain which neurosurgeon was very pleased with results. So happy that you guys ar e battling hard and winning some victories. 

All th best, Andrew

Rob, 

Thank you so much For these and other updates and I apologize for any typo errors or the like as I am working off of of one eye due to symptoms of the the LMD. I am I inspired by your continued fight with Adriana and despite all your obvious frustrations and roadblocks and I think you guys are really doing it right and striking a great balance between palliative care and doing what has worked in the past for a cure. 

As for for me, I continue with the Ipi/Nivo combo with my 4th of those treatments to come shortly and scans to follow after to try to evaluate the effectiveness. I'm on dexamethasone to protect me from swelling and Keppra for anti-Seizur e. My main fight continues to be pain from spinal mets, but I'm doing mostly well in that regard with narcotic pain meds. Also had a procedure about 3 weeks ago to drill a burr hole in skull to relieve pressure in brain which neurosurgeon was very pleased with results. So happy that you guys ar e battling hard and winning some victories. 

All th best, Andrew

Rob, 

i have leptomeningal mets as well (also have had a resected brain met, resected lymph nodes and both SRS radiation, and other radiation to lymph basin)and am being treated currently with the Ipi/Nivo combo (2 treatments in, so very new to it) I'm stable at this time symptomatically and hoping for the best from the combo just playing the waiting game for the immunotherapy to see if I get a response. l appreciate these posts and wish you all the best. I don't have anything to add to this specific discussion right now about the ommaya and CSF, but am meeting with my Melanoma doc Dr. Patrick Ott at Dana Farber in Boston to discuss next steps in the event that the Ipi/Nivo combo doesn't work on Thursday. I will post something Thursday/Friday based on our discussion and maybe I can come out of the meeting with something that can help both of us and others. I'll be asking about intrathecal approaches, trial stuff, IL-2, TIL, whatever I can think of. Probably the topics you've covered. Will be interesting to see what he has to say and I'll post anything I get out of it. 

Rob, 

i have leptomeningal mets as well (also have had a resected brain met, resected lymph nodes and both SRS radiation, and other radiation to lymph basin)and am being treated currently with the Ipi/Nivo combo (2 treatments in, so very new to it) I'm stable at this time symptomatically and hoping for the best from the combo just playing the waiting game for the immunotherapy to see if I get a response. l appreciate these posts and wish you all the best. I don't have anything to add to this specific discussion right now about the ommaya and CSF, but am meeting with my Melanoma doc Dr. Patrick Ott at Dana Farber in Boston to discuss next steps in the event that the Ipi/Nivo combo doesn't work on Thursday. I will post something Thursday/Friday based on our discussion and maybe I can come out of the meeting with something that can help both of us and others. I'll be asking about intrathecal approaches, trial stuff, IL-2, TIL, whatever I can think of. Probably the topics you've covered. Will be interesting to see what he has to say and I'll post anything I get out of it. 

Rob, 

i have leptomeningal mets as well (also have had a resected brain met, resected lymph nodes and both SRS radiation, and other radiation to lymph basin)and am being treated currently with the Ipi/Nivo combo (2 treatments in, so very new to it) I'm stable at this time symptomatically and hoping for the best from the combo just playing the waiting game for the immunotherapy to see if I get a response. l appreciate these posts and wish you all the best. I don't have anything to add to this specific discussion right now about the ommaya and CSF, but am meeting with my Melanoma doc Dr. Patrick Ott at Dana Farber in Boston to discuss next steps in the event that the Ipi/Nivo combo doesn't work on Thursday. I will post something Thursday/Friday based on our discussion and maybe I can come out of the meeting with something that can help both of us and others. I'll be asking about intrathecal approaches, trial stuff, IL-2, TIL, whatever I can think of. Probably the topics you've covered. Will be interesting to see what he has to say and I'll post anything I get out of it. 

Excellent information as always. Great stuff

Excellent information as always. Great stuff

Excellent information as always. Great stuff

Hi, 

I've been really admiring your fight with your father through this board as a person with some similarities and some differences in my own battle (brain, spine, meninges, some SRS, but not as much, one full craniotomy for large tumor). People are tolerating Nivo quite well happy he's starting and I myself have had 3 cycles of Ipi-Nivo with only minimal Diarrhea cropping up after cycle 3 that is well-controlled with basic Imodium.

You guys using the best medical treatments available in an informed and positive way and you foughtto get here. Enjoy the good days, and hope that they will soon become the norm because you deserve it. 

Hi, 

I've been really admiring your fight with your father through this board as a person with some similarities and some differences in my own battle (brain, spine, meninges, some SRS, but not as much, one full craniotomy for large tumor). People are tolerating Nivo quite well happy he's starting and I myself have had 3 cycles of Ipi-Nivo with only minimal Diarrhea cropping up after cycle 3 that is well-controlled with basic Imodium.

You guys using the best medical treatments available in an informed and positive way and you foughtto get here. Enjoy the good days, and hope that they will soon become the norm because you deserve it. 

Hi, 

I've been really admiring your fight with your father through this board as a person with some similarities and some differences in my own battle (brain, spine, meninges, some SRS, but not as much, one full craniotomy for large tumor). People are tolerating Nivo quite well happy he's starting and I myself have had 3 cycles of Ipi-Nivo with only minimal Diarrhea cropping up after cycle 3 that is well-controlled with basic Imodium.

You guys using the best medical treatments available in an informed and positive way and you foughtto get here. Enjoy the good days, and hope that they will soon become the norm because you deserve it. 

Rob,

So as I mentioned, I also have leptomeningal disease like your wife with spine involvement and history of brain tumor and I had a discussion with the melanoma team at Dana Farber to discuss current treatments and my options in the event that the Ipi-Nivo treatment I am on is not effective. I don't have too much concrete to tell you that came out of that meeting unfortunately. I'm still in the position where I will still have a couple months anyway to evaluate whether my treatment is working before I'd be inclined to move on to something unless (depending on symptoms and how they go of course). Trial options are of course limited with CNS, lmd or brain involvement, but they pointed to MD Anderson as the go to place probably doing more for our populations than anything. The docs didnt point to any particular style of treatment  and say definitively that this or that treatment is definitely the one I'd point you too if we wanted you to switch tomorrow. Little nerve-wracking not knowing for sure what my next step would be, but I appreciated the frank conversation I had and also the openness to say that today's best alternative might not be the best alternative in two months. I will keep you in my thoughts and if I hear anything that I think might help, I will post. All the best for now, and remember we can be just one treatment away from our cure, we just have to find the right one. 

Rob,

So as I mentioned, I also have leptomeningal disease like your wife with spine involvement and history of brain tumor and I had a discussion with the melanoma team at Dana Farber to discuss current treatments and my options in the event that the Ipi-Nivo treatment I am on is not effective. I don't have too much concrete to tell you that came out of that meeting unfortunately. I'm still in the position where I will still have a couple months anyway to evaluate whether my treatment is working before I'd be inclined to move on to something unless (depending on symptoms and how they go of course). Trial options are of course limited with CNS, lmd or brain involvement, but they pointed to MD Anderson as the go to place probably doing more for our populations than anything. The docs didnt point to any particular style of treatment  and say definitively that this or that treatment is definitely the one I'd point you too if we wanted you to switch tomorrow. Little nerve-wracking not knowing for sure what my next step would be, but I appreciated the frank conversation I had and also the openness to say that today's best alternative might not be the best alternative in two months. I will keep you in my thoughts and if I hear anything that I think might help, I will post. All the best for now, and remember we can be just one treatment away from our cure, we just have to find the right one. 

Rob,

So as I mentioned, I also have leptomeningal disease like your wife with spine involvement and history of brain tumor and I had a discussion with the melanoma team at Dana Farber to discuss current treatments and my options in the event that the Ipi-Nivo treatment I am on is not effective. I don't have too much concrete to tell you that came out of that meeting unfortunately. I'm still in the position where I will still have a couple months anyway to evaluate whether my treatment is working before I'd be inclined to move on to something unless (depending on symptoms and how they go of course). Trial options are of course limited with CNS, lmd or brain involvement, but they pointed to MD Anderson as the go to place probably doing more for our populations than anything. The docs didnt point to any particular style of treatment  and say definitively that this or that treatment is definitely the one I'd point you too if we wanted you to switch tomorrow. Little nerve-wracking not knowing for sure what my next step would be, but I appreciated the frank conversation I had and also the openness to say that today's best alternative might not be the best alternative in two months. I will keep you in my thoughts and if I hear anything that I think might help, I will post. All the best for now, and remember we can be just one treatment away from our cure, we just have to find the right one.