Leptomeningeal Disease?

Kali, my apologies…  from your post, I didn't realize that LMD had been diagnosed and thought you were wondering if your symptoms might be indicative of LMD.  So I'm not making an assumption, are the CyberKnife sessions targeting the tumors or LMD?  Have your doctors suggested a course of action to treat the LMD?

Best, Joe

Kali, my apologies…  from your post, I didn't realize that LMD had been diagnosed and thought you were wondering if your symptoms might be indicative of LMD.  So I'm not making an assumption, are the CyberKnife sessions targeting the tumors or LMD?  Have your doctors suggested a course of action to treat the LMD?

Best, Joe

Kali, my apologies…  from your post, I didn't realize that LMD had been diagnosed and thought you were wondering if your symptoms might be indicative of LMD.  So I'm not making an assumption, are the CyberKnife sessions targeting the tumors or LMD?  Have your doctors suggested a course of action to treat the LMD?

Best, Joe

I had "suspected" leptomeningeal disease with the first round of brain mets in June 2013 (I've had 2 other rounds since then. Due to the suspicion, I began with WBR (something I never wanted to have to do). The mets all seemed to respond well and the next 2 rounds that popped up were treated with gamma knife (January and May of this year).

More recently I began the Merk PD-1 EAP in June just 3 weeks after my last gamma knife treatment and they made me repeat the MRI before leting me onto the EAP. The radiologist completely freaked out because of the mets he saw (even though they had just been treated). None of the rest of us were surprised by them and I got 4 doses of PD-1 three weeks apart before they repeated a set of scans at the beginning of September. It was the reults from that scan that sent things into a tailspin for me and less than 2 weeks later I was admitted for a craniotomy for a 3.5cm "new" tumor in my right frontal lobe. The plan at the time was to remove that, take 3 weeks or so to heal then come back for radiation to the surgical site as well as to a few other "new" spots they had seen. I have never had any symptoms from any of my mets and this round has been no different.

The craniotomy proceeded as planned and went (at least from my, and it appeared my surgeon's prospective) remarkably well. I was discharged only 2 days later- still with the plan to return in 3 weeks for gamma knife. When the path results came in though it was determined that the entirety of the 3.5cm mass that was removed was radiaion necrosis- not a single live cell was found. Given that information the plan was changed from gamma knife to recheck MRI to look at the other spots and see if they were growing. That recheck was just this past Monday and the decision was to recheck again in 6 weeks. 

What's making them nervous is that both the area that was removed and the other areas they had planned on treating appeared "new", so they want to keep track of things. However, all of these "new" areas are near other areas where I had had at least 1 (in the case of the removed mass of necrosis there had been 2) tumor(s) previously treated with gamma knife. The new working theory is that either the necrosis resulted from proximity to previously treated tumors or that the PD-1 is actually getting things done in the brain as well as my body. Either way the decision was to hold off on more radiation for a few more weeks.

Long post, but the point is that radiation necrosis does happen. I was lucky in that I didn't have any side effects (except for a craniotomy) from mine, but there are plenty who do get symptoms from necrosis. I very much agree with Joe that you should perhaps get a scan and speak with a doctor before jumping to conclusions that it's leptomeningeal disease. . Yes LMD is frightening, but there are other explanations. Try not to get too upset thinking about the "what if's"until you at least have some more information (it's hard, I know)

Good luck

I had "suspected" leptomeningeal disease with the first round of brain mets in June 2013 (I've had 2 other rounds since then. Due to the suspicion, I began with WBR (something I never wanted to have to do). The mets all seemed to respond well and the next 2 rounds that popped up were treated with gamma knife (January and May of this year).

More recently I began the Merk PD-1 EAP in June just 3 weeks after my last gamma knife treatment and they made me repeat the MRI before leting me onto the EAP. The radiologist completely freaked out because of the mets he saw (even though they had just been treated). None of the rest of us were surprised by them and I got 4 doses of PD-1 three weeks apart before they repeated a set of scans at the beginning of September. It was the reults from that scan that sent things into a tailspin for me and less than 2 weeks later I was admitted for a craniotomy for a 3.5cm "new" tumor in my right frontal lobe. The plan at the time was to remove that, take 3 weeks or so to heal then come back for radiation to the surgical site as well as to a few other "new" spots they had seen. I have never had any symptoms from any of my mets and this round has been no different.

The craniotomy proceeded as planned and went (at least from my, and it appeared my surgeon's prospective) remarkably well. I was discharged only 2 days later- still with the plan to return in 3 weeks for gamma knife. When the path results came in though it was determined that the entirety of the 3.5cm mass that was removed was radiaion necrosis- not a single live cell was found. Given that information the plan was changed from gamma knife to recheck MRI to look at the other spots and see if they were growing. That recheck was just this past Monday and the decision was to recheck again in 6 weeks. 

What's making them nervous is that both the area that was removed and the other areas they had planned on treating appeared "new", so they want to keep track of things. However, all of these "new" areas are near other areas where I had had at least 1 (in the case of the removed mass of necrosis there had been 2) tumor(s) previously treated with gamma knife. The new working theory is that either the necrosis resulted from proximity to previously treated tumors or that the PD-1 is actually getting things done in the brain as well as my body. Either way the decision was to hold off on more radiation for a few more weeks.

Long post, but the point is that radiation necrosis does happen. I was lucky in that I didn't have any side effects (except for a craniotomy) from mine, but there are plenty who do get symptoms from necrosis. I very much agree with Joe that you should perhaps get a scan and speak with a doctor before jumping to conclusions that it's leptomeningeal disease. . Yes LMD is frightening, but there are other explanations. Try not to get too upset thinking about the "what if's"until you at least have some more information (it's hard, I know)

Good luck

Oops… should have read through all of the posts. I am sorry to hear that they have conclusively diagnosed LMD. I wish I had any helpful advice or something inspiring to say, but I really don't as my LMD was presumptive and not conclusive and i had no symptoms associated. 

For now I will just have to stick with good luck, I'll be thinking of you, and perhaps add I (and I'm sure everyone else on this forum) will be rooting for you! Fight this with everything you've got and come back and let us know how everything is going for you. You do matter.

-Eva

Oops… should have read through all of the posts. I am sorry to hear that they have conclusively diagnosed LMD. I wish I had any helpful advice or something inspiring to say, but I really don't as my LMD was presumptive and not conclusive and i had no symptoms associated. 

For now I will just have to stick with good luck, I'll be thinking of you, and perhaps add I (and I'm sure everyone else on this forum) will be rooting for you! Fight this with everything you've got and come back and let us know how everything is going for you. You do matter.

-Eva

Oops… should have read through all of the posts. I am sorry to hear that they have conclusively diagnosed LMD. I wish I had any helpful advice or something inspiring to say, but I really don't as my LMD was presumptive and not conclusive and i had no symptoms associated. 

For now I will just have to stick with good luck, I'll be thinking of you, and perhaps add I (and I'm sure everyone else on this forum) will be rooting for you! Fight this with everything you've got and come back and let us know how everything is going for you. You do matter.

-Eva

I had "suspected" leptomeningeal disease with the first round of brain mets in June 2013 (I've had 2 other rounds since then. Due to the suspicion, I began with WBR (something I never wanted to have to do). The mets all seemed to respond well and the next 2 rounds that popped up were treated with gamma knife (January and May of this year).

More recently I began the Merk PD-1 EAP in June just 3 weeks after my last gamma knife treatment and they made me repeat the MRI before leting me onto the EAP. The radiologist completely freaked out because of the mets he saw (even though they had just been treated). None of the rest of us were surprised by them and I got 4 doses of PD-1 three weeks apart before they repeated a set of scans at the beginning of September. It was the reults from that scan that sent things into a tailspin for me and less than 2 weeks later I was admitted for a craniotomy for a 3.5cm "new" tumor in my right frontal lobe. The plan at the time was to remove that, take 3 weeks or so to heal then come back for radiation to the surgical site as well as to a few other "new" spots they had seen. I have never had any symptoms from any of my mets and this round has been no different.

The craniotomy proceeded as planned and went (at least from my, and it appeared my surgeon's prospective) remarkably well. I was discharged only 2 days later- still with the plan to return in 3 weeks for gamma knife. When the path results came in though it was determined that the entirety of the 3.5cm mass that was removed was radiaion necrosis- not a single live cell was found. Given that information the plan was changed from gamma knife to recheck MRI to look at the other spots and see if they were growing. That recheck was just this past Monday and the decision was to recheck again in 6 weeks. 

What's making them nervous is that both the area that was removed and the other areas they had planned on treating appeared "new", so they want to keep track of things. However, all of these "new" areas are near other areas where I had had at least 1 (in the case of the removed mass of necrosis there had been 2) tumor(s) previously treated with gamma knife. The new working theory is that either the necrosis resulted from proximity to previously treated tumors or that the PD-1 is actually getting things done in the brain as well as my body. Either way the decision was to hold off on more radiation for a few more weeks.

Long post, but the point is that radiation necrosis does happen. I was lucky in that I didn't have any side effects (except for a craniotomy) from mine, but there are plenty who do get symptoms from necrosis. I very much agree with Joe that you should perhaps get a scan and speak with a doctor before jumping to conclusions that it's leptomeningeal disease. . Yes LMD is frightening, but there are other explanations. Try not to get too upset thinking about the "what if's"until you at least have some more information (it's hard, I know)

Good luck