› Forums › General Melanoma Community › Ablation in the spinal canal – anything I should know?
- This topic has 39 replies, 6 voices, and was last updated 8 years, 11 months ago by
arthurjedi007.
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- May 28, 2015 at 8:01 pm
I've been deep in the process of getting into a couple potentially good trials. So far that's still going on.
But got a mri of my spine. Two places have soft tissue masses in the spinal canal. One says only minor encroachment. Fortunately we have caught them earlier this time unlike last year when I was almost paralyzed. So although they have narrowed the canal some im not in immediate danger of being paralyzed this time. I can actually walk and feel fairly ok. Granted reading the report where it says every bone in my spine has something wrong is a bit unsettling.
I know if I don't get this taken care of now I'll probably be in the good part of a trial and this comes to haunt me. So I have to get this done before I start a trial.
His nurse says it is up in the air but he is thinking about burning it. I guess that would be radio frequency ablation. I was wondering if it works can this procedure be done again if in say x months I need it again? Unlike radiation which I was told last time can only be done twice in the same spot. He also does the cryo, lasers and everything else is at his disposal.
My non local doc at mayo was thinking cryo and there is a doc there that all he does is cryo on the spine. But I'm thinking of canceling that if I like what this local doc has to say Monday. I must admit the local doc did a lot of detail with the mri report and comparing with several other older reports so I'm getting more comfortable with this local doc.
Is there anything else I should know about this? Or questions I should be asking?
Sorry to be posting this at a time when others are going through so much but I really need some thoughts on this. Maybe I'm even crazy for wanting to do this treatment. My onc first was saying lets just wait and see if it gets bad enough and if so we'll try surgery again. I bugged him enough so he refered me to this interventional radiologist who looks like he has a really good resume on the web. It's dr jennings at Siteman, wash u, barnes in saint Louis.
Thanks.
Artie
- Replies
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- May 28, 2015 at 9:47 pm
Artie, I'm not familiar with the details, but I agree with your instinct to aggressively attack any spinal tumor.
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- May 29, 2015 at 10:51 am
Artie – would the ablation exclude you from any of the trials you're working on? Conversely, would participation make it more difficult to get the ablation?
Your own plans and advocacy have been great so far and if you're leaning in that direction then go with your gut.
Fen
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- May 29, 2015 at 11:39 am
I would think the ablation would not exclude me because radiation doesn't. Although there is like a certain number weeks wash out required for radiation so probably similar. Also a wash out for the pd1 I'm currently on too though.
Once I'm in the trial I doubt if I could get the ablation because thst is treating the disease unless they would classify it as pain control but I doubt it. So doing it before trial is really the only option.
Artie
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- May 29, 2015 at 11:39 am
I would think the ablation would not exclude me because radiation doesn't. Although there is like a certain number weeks wash out required for radiation so probably similar. Also a wash out for the pd1 I'm currently on too though.
Once I'm in the trial I doubt if I could get the ablation because thst is treating the disease unless they would classify it as pain control but I doubt it. So doing it before trial is really the only option.
Artie
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- May 29, 2015 at 11:39 am
I would think the ablation would not exclude me because radiation doesn't. Although there is like a certain number weeks wash out required for radiation so probably similar. Also a wash out for the pd1 I'm currently on too though.
Once I'm in the trial I doubt if I could get the ablation because thst is treating the disease unless they would classify it as pain control but I doubt it. So doing it before trial is really the only option.
Artie
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- May 29, 2015 at 10:51 am
Artie – would the ablation exclude you from any of the trials you're working on? Conversely, would participation make it more difficult to get the ablation?
Your own plans and advocacy have been great so far and if you're leaning in that direction then go with your gut.
Fen
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- May 29, 2015 at 10:51 am
Artie – would the ablation exclude you from any of the trials you're working on? Conversely, would participation make it more difficult to get the ablation?
Your own plans and advocacy have been great so far and if you're leaning in that direction then go with your gut.
Fen
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- May 29, 2015 at 3:06 pm
Hey Artie,
I don't know very much about ablation or cryo therapy. Honestly, I don't know which would be better to do. I know that radioablation is used for varicose veins and in hearts (like in Wolff Parkinson White syndrome) where small fibers are causing trouble and they can get rid of them that way…so it is very precise….which for your condition is a very good and important thing. I guess I would ask the doc the pros and cons of each. I would also ask how exactly they would access the area and what that would entail.
I wouldn't think that this procedure would block any trial participation. Neither is radiation. Sadly, you have enough tumor burden elsewhere to measure effect of later treatment. It is hard to know whether to ask the trial coordinator about it or not. Trial participation is so crazy.
Probably not being very helpful here. This may not be of help either…or you may have already looked into it…Sorry…I get confused about which thing we've looked at/talked about… Anyhow, a dear one of mine (Love you Eric!!) sent this to me with you in mind: https://clinicaltrials.gov/ct2/show/NCT02452424 It is a study combining Pembro with PLX3397. It is not recruiting yet. Has sites to be, listed as California, Michigan, and texas. (I know travel is not your best idea.). Requires a 28 day washout of pretty much everything. However, the PLX3397 component is supposedly good for bone disease because it works on osteoclasts. It is being offered to patients with a variety of cancers, but the melanoma patients are NOT excluded for having had anti-PD1, BRAFi, etc. That is no problem. This exclussion, however, might be:
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Has known central nervous system metastases and/or carcinomatous meningitis.
o Note: Subjects with previously treated brain metastases may participate if they meet the following criteria: 1) are stable for at least 28 days prior to the first dose of study treatment and if all neurologic symptoms returned to baseline); 2) have no evidence of new or enlarging brain metastases; and 3) have not been using steroids for at least 7 days prior to first dose of study treatment. This exception does not include carcinomatous meningitis, which is excluded regardless of clinical stability.
So….I don't know how they would categorize your condition. I don't know if, perhaps, ablation of the spinal areas affected could eradicate that sufficiently so that you could enter. Don't know if you would even want to try this one….but thought I would pass it on.
One other piece of info I discovered when looking up some stuff about all this…. It seems that two of the trials with XO40 have been terminated. Not at all sure what that means. But, thought I'd let you know.
Much love, c
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- May 29, 2015 at 3:06 pm
Hey Artie,
I don't know very much about ablation or cryo therapy. Honestly, I don't know which would be better to do. I know that radioablation is used for varicose veins and in hearts (like in Wolff Parkinson White syndrome) where small fibers are causing trouble and they can get rid of them that way…so it is very precise….which for your condition is a very good and important thing. I guess I would ask the doc the pros and cons of each. I would also ask how exactly they would access the area and what that would entail.
I wouldn't think that this procedure would block any trial participation. Neither is radiation. Sadly, you have enough tumor burden elsewhere to measure effect of later treatment. It is hard to know whether to ask the trial coordinator about it or not. Trial participation is so crazy.
Probably not being very helpful here. This may not be of help either…or you may have already looked into it…Sorry…I get confused about which thing we've looked at/talked about… Anyhow, a dear one of mine (Love you Eric!!) sent this to me with you in mind: https://clinicaltrials.gov/ct2/show/NCT02452424 It is a study combining Pembro with PLX3397. It is not recruiting yet. Has sites to be, listed as California, Michigan, and texas. (I know travel is not your best idea.). Requires a 28 day washout of pretty much everything. However, the PLX3397 component is supposedly good for bone disease because it works on osteoclasts. It is being offered to patients with a variety of cancers, but the melanoma patients are NOT excluded for having had anti-PD1, BRAFi, etc. That is no problem. This exclussion, however, might be:
-
Has known central nervous system metastases and/or carcinomatous meningitis.
o Note: Subjects with previously treated brain metastases may participate if they meet the following criteria: 1) are stable for at least 28 days prior to the first dose of study treatment and if all neurologic symptoms returned to baseline); 2) have no evidence of new or enlarging brain metastases; and 3) have not been using steroids for at least 7 days prior to first dose of study treatment. This exception does not include carcinomatous meningitis, which is excluded regardless of clinical stability.
So….I don't know how they would categorize your condition. I don't know if, perhaps, ablation of the spinal areas affected could eradicate that sufficiently so that you could enter. Don't know if you would even want to try this one….but thought I would pass it on.
One other piece of info I discovered when looking up some stuff about all this…. It seems that two of the trials with XO40 have been terminated. Not at all sure what that means. But, thought I'd let you know.
Much love, c
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- May 29, 2015 at 5:10 pm
Thank you Celeste. From what I was told in the past since the spinal cord is fine and my head is fine I don't have any cns issue from a doc standpoint. Granted some could view that differently. But I tend to agree especially since the mri confirmed it and I have no symptoms. But having soft tissue tumor mass in the spinal canal although I guess some cm from the spinal cord I want treated now for my own peace of mind if nothing else. Thats good to know about the radio ablation. I'll know more Monday when I see that doc.
That plx3397 sounds good. I don't know what they mean by a pvns tumor type which gave awesome results. Seems like they are trying any type for this trial.
Thats a bummer about xo40. That's one of the ones the Chicago doc mentioned. Oh well he has 3 others for me maybe. Plus NIH is rolling along.
Artie
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- May 29, 2015 at 5:10 pm
Thank you Celeste. From what I was told in the past since the spinal cord is fine and my head is fine I don't have any cns issue from a doc standpoint. Granted some could view that differently. But I tend to agree especially since the mri confirmed it and I have no symptoms. But having soft tissue tumor mass in the spinal canal although I guess some cm from the spinal cord I want treated now for my own peace of mind if nothing else. Thats good to know about the radio ablation. I'll know more Monday when I see that doc.
That plx3397 sounds good. I don't know what they mean by a pvns tumor type which gave awesome results. Seems like they are trying any type for this trial.
Thats a bummer about xo40. That's one of the ones the Chicago doc mentioned. Oh well he has 3 others for me maybe. Plus NIH is rolling along.
Artie
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- May 29, 2015 at 6:35 pm
Hey Artie,
The trial your doc is offering may well still be ongoing and a good thing. I just wanted to let you know what I'd seen. Your other stuff in progress still sounds good and as the PLX3397/Pembro combo trial is not yet recruiting…it may be something you can just keep in mind if it turns out you need it. The clarification about what is going on in your spine is good, too. I mean…a tumor anywhere sucks…but near but not involved is better!!! The PVNS thing was a study they used PLX3397 in to treat folks with a nodule on their tendon sheath where apparently it did pretty well. It has also been used to treat glioblastomas, though I'm not sure the results were that great there. They are still working on that on, apparently. Hopefully your doc can give you some good information about the ablation procedure as well as pros and cons vs the cryo. Fingers crossed for you!! Love, c
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- May 29, 2015 at 6:35 pm
Hey Artie,
The trial your doc is offering may well still be ongoing and a good thing. I just wanted to let you know what I'd seen. Your other stuff in progress still sounds good and as the PLX3397/Pembro combo trial is not yet recruiting…it may be something you can just keep in mind if it turns out you need it. The clarification about what is going on in your spine is good, too. I mean…a tumor anywhere sucks…but near but not involved is better!!! The PVNS thing was a study they used PLX3397 in to treat folks with a nodule on their tendon sheath where apparently it did pretty well. It has also been used to treat glioblastomas, though I'm not sure the results were that great there. They are still working on that on, apparently. Hopefully your doc can give you some good information about the ablation procedure as well as pros and cons vs the cryo. Fingers crossed for you!! Love, c
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- May 29, 2015 at 6:35 pm
Hey Artie,
The trial your doc is offering may well still be ongoing and a good thing. I just wanted to let you know what I'd seen. Your other stuff in progress still sounds good and as the PLX3397/Pembro combo trial is not yet recruiting…it may be something you can just keep in mind if it turns out you need it. The clarification about what is going on in your spine is good, too. I mean…a tumor anywhere sucks…but near but not involved is better!!! The PVNS thing was a study they used PLX3397 in to treat folks with a nodule on their tendon sheath where apparently it did pretty well. It has also been used to treat glioblastomas, though I'm not sure the results were that great there. They are still working on that on, apparently. Hopefully your doc can give you some good information about the ablation procedure as well as pros and cons vs the cryo. Fingers crossed for you!! Love, c
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- May 29, 2015 at 5:10 pm
Thank you Celeste. From what I was told in the past since the spinal cord is fine and my head is fine I don't have any cns issue from a doc standpoint. Granted some could view that differently. But I tend to agree especially since the mri confirmed it and I have no symptoms. But having soft tissue tumor mass in the spinal canal although I guess some cm from the spinal cord I want treated now for my own peace of mind if nothing else. Thats good to know about the radio ablation. I'll know more Monday when I see that doc.
That plx3397 sounds good. I don't know what they mean by a pvns tumor type which gave awesome results. Seems like they are trying any type for this trial.
Thats a bummer about xo40. That's one of the ones the Chicago doc mentioned. Oh well he has 3 others for me maybe. Plus NIH is rolling along.
Artie
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- May 29, 2015 at 3:06 pm
Hey Artie,
I don't know very much about ablation or cryo therapy. Honestly, I don't know which would be better to do. I know that radioablation is used for varicose veins and in hearts (like in Wolff Parkinson White syndrome) where small fibers are causing trouble and they can get rid of them that way…so it is very precise….which for your condition is a very good and important thing. I guess I would ask the doc the pros and cons of each. I would also ask how exactly they would access the area and what that would entail.
I wouldn't think that this procedure would block any trial participation. Neither is radiation. Sadly, you have enough tumor burden elsewhere to measure effect of later treatment. It is hard to know whether to ask the trial coordinator about it or not. Trial participation is so crazy.
Probably not being very helpful here. This may not be of help either…or you may have already looked into it…Sorry…I get confused about which thing we've looked at/talked about… Anyhow, a dear one of mine (Love you Eric!!) sent this to me with you in mind: https://clinicaltrials.gov/ct2/show/NCT02452424 It is a study combining Pembro with PLX3397. It is not recruiting yet. Has sites to be, listed as California, Michigan, and texas. (I know travel is not your best idea.). Requires a 28 day washout of pretty much everything. However, the PLX3397 component is supposedly good for bone disease because it works on osteoclasts. It is being offered to patients with a variety of cancers, but the melanoma patients are NOT excluded for having had anti-PD1, BRAFi, etc. That is no problem. This exclussion, however, might be:
-
Has known central nervous system metastases and/or carcinomatous meningitis.
o Note: Subjects with previously treated brain metastases may participate if they meet the following criteria: 1) are stable for at least 28 days prior to the first dose of study treatment and if all neurologic symptoms returned to baseline); 2) have no evidence of new or enlarging brain metastases; and 3) have not been using steroids for at least 7 days prior to first dose of study treatment. This exception does not include carcinomatous meningitis, which is excluded regardless of clinical stability.
So….I don't know how they would categorize your condition. I don't know if, perhaps, ablation of the spinal areas affected could eradicate that sufficiently so that you could enter. Don't know if you would even want to try this one….but thought I would pass it on.
One other piece of info I discovered when looking up some stuff about all this…. It seems that two of the trials with XO40 have been terminated. Not at all sure what that means. But, thought I'd let you know.
Much love, c
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- May 29, 2015 at 3:17 pm
Artie
I would say to go ahead and take care of the spine issues now because you are corect with the thinking that later on during the trial tou would have wished you had. Best of luck!!!
Emily
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- May 29, 2015 at 4:42 pm
Wow Emily with all you guys are going through you are still taking time to post about me. Thank you and best of success with your husband. I just heard from my NIH nurse today and they are proceeding along with the process. They got the blood that was sent but haven't recieved the tissue yet. Hopefully they get everything they need for your husband soon and can make it happen.
Artie
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- May 29, 2015 at 4:42 pm
Wow Emily with all you guys are going through you are still taking time to post about me. Thank you and best of success with your husband. I just heard from my NIH nurse today and they are proceeding along with the process. They got the blood that was sent but haven't recieved the tissue yet. Hopefully they get everything they need for your husband soon and can make it happen.
Artie
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- May 29, 2015 at 4:42 pm
Wow Emily with all you guys are going through you are still taking time to post about me. Thank you and best of success with your husband. I just heard from my NIH nurse today and they are proceeding along with the process. They got the blood that was sent but haven't recieved the tissue yet. Hopefully they get everything they need for your husband soon and can make it happen.
Artie
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- June 1, 2015 at 10:05 pm
Going to do radio frequency ablation on the 10th at 8:15am. Going to be very tricky since the spinal cord is there. It's to try and burn the mass in my spinal cord. So has to make sure to keep it cool or that's the end for me. Will be 2 small slits they later glue and bandaid on the back for the instruments. He'll also do some cement on the t10 bone. So very tricky but I believe that mass needs out of there or it will cause the almost paralyzation like last year. I think he's a good doc so I cancelled this at mayo.
Artie
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- June 1, 2015 at 10:05 pm
Going to do radio frequency ablation on the 10th at 8:15am. Going to be very tricky since the spinal cord is there. It's to try and burn the mass in my spinal cord. So has to make sure to keep it cool or that's the end for me. Will be 2 small slits they later glue and bandaid on the back for the instruments. He'll also do some cement on the t10 bone. So very tricky but I believe that mass needs out of there or it will cause the almost paralyzation like last year. I think he's a good doc so I cancelled this at mayo.
Artie
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- June 1, 2015 at 10:05 pm
Going to do radio frequency ablation on the 10th at 8:15am. Going to be very tricky since the spinal cord is there. It's to try and burn the mass in my spinal cord. So has to make sure to keep it cool or that's the end for me. Will be 2 small slits they later glue and bandaid on the back for the instruments. He'll also do some cement on the t10 bone. So very tricky but I believe that mass needs out of there or it will cause the almost paralyzation like last year. I think he's a good doc so I cancelled this at mayo.
Artie
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- June 4, 2015 at 8:44 pm
I guess I should not have cancelled the ablation surgery at mayo. Now the one slot they had for the month is full so waiting again. The saint Louis Siteman folks cancelled it here just now. Instead they want to do full blown surgery to remove the t10 vertebrae and the mass in the spinal canal. This is the same group of doctors that told my doc a couple months ago I could not have surgery on my shoulder because I would not survive the recovery. Also the same docs that last year did the angiogram to try and stop the blood flow to thst tumor but couldn't so they cancelled the surgery.
So I'm kind of at a loss what to do. I've called my radiation doc to see if he can do anything but since it's been radiated twice I doubt it. I've called mayo and got put back on their list. I'm waiting to hear what this saint Louis surgeon says.
Fortunately I still feel and walk ok. I'm just at a loss of what else to do except wait to hear back from the docs.
Artie
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- June 4, 2015 at 8:44 pm
I guess I should not have cancelled the ablation surgery at mayo. Now the one slot they had for the month is full so waiting again. The saint Louis Siteman folks cancelled it here just now. Instead they want to do full blown surgery to remove the t10 vertebrae and the mass in the spinal canal. This is the same group of doctors that told my doc a couple months ago I could not have surgery on my shoulder because I would not survive the recovery. Also the same docs that last year did the angiogram to try and stop the blood flow to thst tumor but couldn't so they cancelled the surgery.
So I'm kind of at a loss what to do. I've called my radiation doc to see if he can do anything but since it's been radiated twice I doubt it. I've called mayo and got put back on their list. I'm waiting to hear what this saint Louis surgeon says.
Fortunately I still feel and walk ok. I'm just at a loss of what else to do except wait to hear back from the docs.
Artie
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- June 4, 2015 at 8:44 pm
I guess I should not have cancelled the ablation surgery at mayo. Now the one slot they had for the month is full so waiting again. The saint Louis Siteman folks cancelled it here just now. Instead they want to do full blown surgery to remove the t10 vertebrae and the mass in the spinal canal. This is the same group of doctors that told my doc a couple months ago I could not have surgery on my shoulder because I would not survive the recovery. Also the same docs that last year did the angiogram to try and stop the blood flow to thst tumor but couldn't so they cancelled the surgery.
So I'm kind of at a loss what to do. I've called my radiation doc to see if he can do anything but since it's been radiated twice I doubt it. I've called mayo and got put back on their list. I'm waiting to hear what this saint Louis surgeon says.
Fortunately I still feel and walk ok. I'm just at a loss of what else to do except wait to hear back from the docs.
Artie
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