› Forums › General Melanoma Community › Should I do radio frequency or cryo ablation?
- This topic has 24 replies, 3 voices, and was last updated 10 years, 8 months ago by
Bubbles.
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- June 11, 2015 at 12:15 am
Saw the regular surgeon today for my t10. I've decided waiting 4 to 6 weeks for a surgery that will probably get cancelled during the angiography anyway like last year. Plus a minimum 4 week downtime to probably 9 to 12 months recovery to get back to where I'm at now. And that's all best case. There are huge risks of paralysis and infection and the rods not holding. I've got at least 30 other tumors some of which keep growing and a new one showed up. Can do ablation now and surgery at a later time if needed.
Bcause the spinal cord is so close ablation cannot get all the mass in my spinal canal.
My saint Louis doc says he will do radio frequency ablation to burn the tumor mass in the spinal canal. He says he's had better success burning instead of freezing melanoma.
My mayo doc will do cryo ablation to freeze it. That's all he does and people all over the world go just for him to do their cryo.
So I dunno should I go with my local doc and have it burned or the mayo doc and freeze it? The regular surgeon today said they are not doing anything at mayo for ablation they aren't doing in saint Louis.
Downtime is supposed to be at most 1 day with a few days light activity.
Artie
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- June 11, 2015 at 11:56 am
Hi Artie!
Have you heard anything more from NIH? My L2 tumor was embolized two days before surgery. The couldn't remove all of the tumor but the spine has remained stable, including the still fractured vertebrae. Recovery has been on-going. (Surgery was Halloween, 2013.) I'm a lot older than you, so that has something to do with it too. Arthritis, etc. I walk and work on core exercises which help a lot. I really don't know what I would do….possibly the procedure that's safest and wouldn't interfere with a possible clinical trial at NIH? Wondering if NIH will consider TIL as a combination with Keytruda since it's not been long since you were treated with it. I had the opposite order…chem to take down my immune system, T-cells, Interleuken 2 and then about 6 weeks later or so, Pembro. The trial at NIH didn't work, but I was only the third person to do it so they've learned more by now. Dr. Atkins feels that the two (t-cells and Pembro) worked very well together. I hope you find the same thing! Do you have a resectable tumor that NIH can use? I didn't…all were either too small with the exception of a very large soft tissue mass. They took cells from that but they didn't grow. Ended up with gene therapy; took white cells from my blood and re-engineered them. I hope they screen you soon. I don't know what other options NIH has now, but I'm going to take a look today.
Keeping you in my prayers!
Terrie
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- June 11, 2015 at 3:23 pm
Thank you Terrie. I'll probably call NIH today. I usually call every Thursday and she calls me back Friday. Basically they haven't got my biopsy samples which I think it's more me I would rather they have examined those before I go for screening. I also want the ablation done first. So I talked to my doc and his head nurse so she will track down the problem. What NIH was telling me is they examine the blood which they recieved and the biopsy to make sure the type of melanoma I have is a type they can treat.
I do have several tumors they could harvest. Most have been radiated but some haven't. There's a non radiated 5 by 4 cm on my left kidney and one about the size of a walnut in my upper left leg close to that major artery.
She was saying about the same. Chemo to take down immune system, tcells, il2. Other places like moffit are doing the ipi and pd1 stuff but I don't think NIH is. Il2 is different immunotherapy than ipi and pd1. Didn't quite understand it on tv so not sure of the difference. I think the key is how they copy the tcells and maybe manipulate them some way so they get the best fighters. Latest Rosenberg article I saw said from what they learned in a recent trial he could get the response rate from 50 up to 70%. Someone on mif was saying out of over 400 melanoma patients the response rate is 50%. So in my opinion as long as it works for me that's what I care about. Seems like pretty good odds.
I know if I make it through my treatment my local doc would have no problem putting me back on pd1 since it is fda approved and as long as my blood work is ok. I imagine you had to do it in a trial so at least I don't have to deal with that.
Artie
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- June 11, 2015 at 10:40 pm
Artie, I hope you can get the ablation done soon and then get into one of the trials at NIH. I got Pembro through the Extended Access Program. It was FDA approved a few months after I started it. If scans show that Melanoma has returned, they'll put me back on Keytruda.
Good luck to you! Please keep us posted!
Terrie
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- June 12, 2015 at 4:26 pm
Ah. Yes. I forgot. Too much radiation to head and head tumor is what I've started blaming my forgetfulness on. Before the head radiation I used to never forget much. You and Eva and some others started the Eap a little after I started on May 21 last year. I didn't realize your NIH was so soon before that.
Heard from NIH and they finally got the biopsy material. She is leaving it up to me when to setup to come. They want me off pd1 for 2 to 3 weeks so my cells are in a normal state when I get there. They are fine with having ablation done just radiation and chemo ie: pd1 delays things. So if the ablation is the week of the 29th I'm thinking either 1 or 2 weeks after that week. Unless they can do it here in saint Louis sooner which I'm supposed to hear today. I'll play it by ear. By that week they should hopefully have the blood work and biopsy tests done so will be sure they have something to offer me before I go there.
I just can't get that X-ray picture of my spine from Wednesday out of my mind. They had it up there for the almost an hour I waited to see the doc. Wish I had thought to take a picture of it. Very scary looking. I don't know how I can sit upright let alone walk. Certainly a divine miracle in my mind. Kind of like a stack of blocks except the t10 has a big corner gone so the ones above it are crooked. I can only imagine what you must have went through with that one in your spine. But at least it sounds like the NIH plus pd1 has worked good for you so that is great,
Artie
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- June 12, 2015 at 4:26 pm
Ah. Yes. I forgot. Too much radiation to head and head tumor is what I've started blaming my forgetfulness on. Before the head radiation I used to never forget much. You and Eva and some others started the Eap a little after I started on May 21 last year. I didn't realize your NIH was so soon before that.
Heard from NIH and they finally got the biopsy material. She is leaving it up to me when to setup to come. They want me off pd1 for 2 to 3 weeks so my cells are in a normal state when I get there. They are fine with having ablation done just radiation and chemo ie: pd1 delays things. So if the ablation is the week of the 29th I'm thinking either 1 or 2 weeks after that week. Unless they can do it here in saint Louis sooner which I'm supposed to hear today. I'll play it by ear. By that week they should hopefully have the blood work and biopsy tests done so will be sure they have something to offer me before I go there.
I just can't get that X-ray picture of my spine from Wednesday out of my mind. They had it up there for the almost an hour I waited to see the doc. Wish I had thought to take a picture of it. Very scary looking. I don't know how I can sit upright let alone walk. Certainly a divine miracle in my mind. Kind of like a stack of blocks except the t10 has a big corner gone so the ones above it are crooked. I can only imagine what you must have went through with that one in your spine. But at least it sounds like the NIH plus pd1 has worked good for you so that is great,
Artie
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- June 12, 2015 at 4:26 pm
Ah. Yes. I forgot. Too much radiation to head and head tumor is what I've started blaming my forgetfulness on. Before the head radiation I used to never forget much. You and Eva and some others started the Eap a little after I started on May 21 last year. I didn't realize your NIH was so soon before that.
Heard from NIH and they finally got the biopsy material. She is leaving it up to me when to setup to come. They want me off pd1 for 2 to 3 weeks so my cells are in a normal state when I get there. They are fine with having ablation done just radiation and chemo ie: pd1 delays things. So if the ablation is the week of the 29th I'm thinking either 1 or 2 weeks after that week. Unless they can do it here in saint Louis sooner which I'm supposed to hear today. I'll play it by ear. By that week they should hopefully have the blood work and biopsy tests done so will be sure they have something to offer me before I go there.
I just can't get that X-ray picture of my spine from Wednesday out of my mind. They had it up there for the almost an hour I waited to see the doc. Wish I had thought to take a picture of it. Very scary looking. I don't know how I can sit upright let alone walk. Certainly a divine miracle in my mind. Kind of like a stack of blocks except the t10 has a big corner gone so the ones above it are crooked. I can only imagine what you must have went through with that one in your spine. But at least it sounds like the NIH plus pd1 has worked good for you so that is great,
Artie
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- June 11, 2015 at 10:40 pm
Artie, I hope you can get the ablation done soon and then get into one of the trials at NIH. I got Pembro through the Extended Access Program. It was FDA approved a few months after I started it. If scans show that Melanoma has returned, they'll put me back on Keytruda.
Good luck to you! Please keep us posted!
Terrie
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- June 11, 2015 at 10:40 pm
Artie, I hope you can get the ablation done soon and then get into one of the trials at NIH. I got Pembro through the Extended Access Program. It was FDA approved a few months after I started it. If scans show that Melanoma has returned, they'll put me back on Keytruda.
Good luck to you! Please keep us posted!
Terrie
-
- June 11, 2015 at 10:40 pm
Artie, I hope you can get the ablation done soon and then get into one of the trials at NIH. I got Pembro through the Extended Access Program. It was FDA approved a few months after I started it. If scans show that Melanoma has returned, they'll put me back on Keytruda.
Good luck to you! Please keep us posted!
Terrie
-
- June 11, 2015 at 10:40 pm
Artie, I hope you can get the ablation done soon and then get into one of the trials at NIH. I got Pembro through the Extended Access Program. It was FDA approved a few months after I started it. If scans show that Melanoma has returned, they'll put me back on Keytruda.
Good luck to you! Please keep us posted!
Terrie
-
- June 11, 2015 at 10:40 pm
Artie, I hope you can get the ablation done soon and then get into one of the trials at NIH. I got Pembro through the Extended Access Program. It was FDA approved a few months after I started it. If scans show that Melanoma has returned, they'll put me back on Keytruda.
Good luck to you! Please keep us posted!
Terrie
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- June 11, 2015 at 3:23 pm
Thank you Terrie. I'll probably call NIH today. I usually call every Thursday and she calls me back Friday. Basically they haven't got my biopsy samples which I think it's more me I would rather they have examined those before I go for screening. I also want the ablation done first. So I talked to my doc and his head nurse so she will track down the problem. What NIH was telling me is they examine the blood which they recieved and the biopsy to make sure the type of melanoma I have is a type they can treat.
I do have several tumors they could harvest. Most have been radiated but some haven't. There's a non radiated 5 by 4 cm on my left kidney and one about the size of a walnut in my upper left leg close to that major artery.
She was saying about the same. Chemo to take down immune system, tcells, il2. Other places like moffit are doing the ipi and pd1 stuff but I don't think NIH is. Il2 is different immunotherapy than ipi and pd1. Didn't quite understand it on tv so not sure of the difference. I think the key is how they copy the tcells and maybe manipulate them some way so they get the best fighters. Latest Rosenberg article I saw said from what they learned in a recent trial he could get the response rate from 50 up to 70%. Someone on mif was saying out of over 400 melanoma patients the response rate is 50%. So in my opinion as long as it works for me that's what I care about. Seems like pretty good odds.
I know if I make it through my treatment my local doc would have no problem putting me back on pd1 since it is fda approved and as long as my blood work is ok. I imagine you had to do it in a trial so at least I don't have to deal with that.
Artie
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- June 11, 2015 at 3:23 pm
Thank you Terrie. I'll probably call NIH today. I usually call every Thursday and she calls me back Friday. Basically they haven't got my biopsy samples which I think it's more me I would rather they have examined those before I go for screening. I also want the ablation done first. So I talked to my doc and his head nurse so she will track down the problem. What NIH was telling me is they examine the blood which they recieved and the biopsy to make sure the type of melanoma I have is a type they can treat.
I do have several tumors they could harvest. Most have been radiated but some haven't. There's a non radiated 5 by 4 cm on my left kidney and one about the size of a walnut in my upper left leg close to that major artery.
She was saying about the same. Chemo to take down immune system, tcells, il2. Other places like moffit are doing the ipi and pd1 stuff but I don't think NIH is. Il2 is different immunotherapy than ipi and pd1. Didn't quite understand it on tv so not sure of the difference. I think the key is how they copy the tcells and maybe manipulate them some way so they get the best fighters. Latest Rosenberg article I saw said from what they learned in a recent trial he could get the response rate from 50 up to 70%. Someone on mif was saying out of over 400 melanoma patients the response rate is 50%. So in my opinion as long as it works for me that's what I care about. Seems like pretty good odds.
I know if I make it through my treatment my local doc would have no problem putting me back on pd1 since it is fda approved and as long as my blood work is ok. I imagine you had to do it in a trial so at least I don't have to deal with that.
Artie
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- June 11, 2015 at 11:56 am
Hi Artie!
Have you heard anything more from NIH? My L2 tumor was embolized two days before surgery. The couldn't remove all of the tumor but the spine has remained stable, including the still fractured vertebrae. Recovery has been on-going. (Surgery was Halloween, 2013.) I'm a lot older than you, so that has something to do with it too. Arthritis, etc. I walk and work on core exercises which help a lot. I really don't know what I would do….possibly the procedure that's safest and wouldn't interfere with a possible clinical trial at NIH? Wondering if NIH will consider TIL as a combination with Keytruda since it's not been long since you were treated with it. I had the opposite order…chem to take down my immune system, T-cells, Interleuken 2 and then about 6 weeks later or so, Pembro. The trial at NIH didn't work, but I was only the third person to do it so they've learned more by now. Dr. Atkins feels that the two (t-cells and Pembro) worked very well together. I hope you find the same thing! Do you have a resectable tumor that NIH can use? I didn't…all were either too small with the exception of a very large soft tissue mass. They took cells from that but they didn't grow. Ended up with gene therapy; took white cells from my blood and re-engineered them. I hope they screen you soon. I don't know what other options NIH has now, but I'm going to take a look today.
Keeping you in my prayers!
Terrie
-
- June 11, 2015 at 11:56 am
Hi Artie!
Have you heard anything more from NIH? My L2 tumor was embolized two days before surgery. The couldn't remove all of the tumor but the spine has remained stable, including the still fractured vertebrae. Recovery has been on-going. (Surgery was Halloween, 2013.) I'm a lot older than you, so that has something to do with it too. Arthritis, etc. I walk and work on core exercises which help a lot. I really don't know what I would do….possibly the procedure that's safest and wouldn't interfere with a possible clinical trial at NIH? Wondering if NIH will consider TIL as a combination with Keytruda since it's not been long since you were treated with it. I had the opposite order…chem to take down my immune system, T-cells, Interleuken 2 and then about 6 weeks later or so, Pembro. The trial at NIH didn't work, but I was only the third person to do it so they've learned more by now. Dr. Atkins feels that the two (t-cells and Pembro) worked very well together. I hope you find the same thing! Do you have a resectable tumor that NIH can use? I didn't…all were either too small with the exception of a very large soft tissue mass. They took cells from that but they didn't grow. Ended up with gene therapy; took white cells from my blood and re-engineered them. I hope they screen you soon. I don't know what other options NIH has now, but I'm going to take a look today.
Keeping you in my prayers!
Terrie
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- June 11, 2015 at 12:29 pm
Hey Artie,
I think doing cryo or radioablation instead of actual surgery right now makes sense. You can always do the physical surgery later if you must. However, when choosing between cryo or radio ablation????? Wow. I just don't know. I don't know the data and am not that familiar with either procedure and I don't know that there really is any info comparing the two out there. I guess if I were in your shoes…I would choose the one that when speaking the the doc and their team I felt the most comfortable. It is also very wise, no matter the procedure, to go where they (both the facility and the doc) do it A LOT!!! Outcomes are always better in that case. But, it sounds like both of your options are done frequently where you are looking.
You have faced so many tough decisions! Sorry you are having to deal with one more!!! Yours, c
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- June 11, 2015 at 3:29 pm
Thank you Celeste. They do it a lot more at mayo. I think in saint Louis he does a type of procedure once or twice a week. Not always the same procedure because he fits the procedure to the patient. At mayo that doc does only cryo 3 days a week with 2 or 3 or more patients a day. I won't be able to talk to the mayo doc until we get there so not sure what they will say. But that is the week of the 29th.
So I don't know what to do. But at least there are options so that is good.
Artie
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- June 11, 2015 at 3:29 pm
Thank you Celeste. They do it a lot more at mayo. I think in saint Louis he does a type of procedure once or twice a week. Not always the same procedure because he fits the procedure to the patient. At mayo that doc does only cryo 3 days a week with 2 or 3 or more patients a day. I won't be able to talk to the mayo doc until we get there so not sure what they will say. But that is the week of the 29th.
So I don't know what to do. But at least there are options so that is good.
Artie
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- June 11, 2015 at 3:29 pm
Thank you Celeste. They do it a lot more at mayo. I think in saint Louis he does a type of procedure once or twice a week. Not always the same procedure because he fits the procedure to the patient. At mayo that doc does only cryo 3 days a week with 2 or 3 or more patients a day. I won't be able to talk to the mayo doc until we get there so not sure what they will say. But that is the week of the 29th.
So I don't know what to do. But at least there are options so that is good.
Artie
-
- June 11, 2015 at 12:29 pm
Hey Artie,
I think doing cryo or radioablation instead of actual surgery right now makes sense. You can always do the physical surgery later if you must. However, when choosing between cryo or radio ablation????? Wow. I just don't know. I don't know the data and am not that familiar with either procedure and I don't know that there really is any info comparing the two out there. I guess if I were in your shoes…I would choose the one that when speaking the the doc and their team I felt the most comfortable. It is also very wise, no matter the procedure, to go where they (both the facility and the doc) do it A LOT!!! Outcomes are always better in that case. But, it sounds like both of your options are done frequently where you are looking.
You have faced so many tough decisions! Sorry you are having to deal with one more!!! Yours, c
-
- June 11, 2015 at 12:29 pm
Hey Artie,
I think doing cryo or radioablation instead of actual surgery right now makes sense. You can always do the physical surgery later if you must. However, when choosing between cryo or radio ablation????? Wow. I just don't know. I don't know the data and am not that familiar with either procedure and I don't know that there really is any info comparing the two out there. I guess if I were in your shoes…I would choose the one that when speaking the the doc and their team I felt the most comfortable. It is also very wise, no matter the procedure, to go where they (both the facility and the doc) do it A LOT!!! Outcomes are always better in that case. But, it sounds like both of your options are done frequently where you are looking.
You have faced so many tough decisions! Sorry you are having to deal with one more!!! Yours, c
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