Forum Replies Created
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- February 20, 2015 at 9:07 am
Thanks for all the input. I've asked previously about intralesional treatment but it was dismissed. I will ask again next week at my appointment. I like the sound of that shock therapy too. I'm currently on Keytruda so I doubt that I can switch just yet.
I was also curious about filtering these tumors naturally, or in combination with current treatment. The recent scans have shown the density of this tumor has changed and may be necrotic. Problem is I still have the mass in my groin.
Thanks,
Shane
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- February 20, 2015 at 9:07 am
Thanks for all the input. I've asked previously about intralesional treatment but it was dismissed. I will ask again next week at my appointment. I like the sound of that shock therapy too. I'm currently on Keytruda so I doubt that I can switch just yet.
I was also curious about filtering these tumors naturally, or in combination with current treatment. The recent scans have shown the density of this tumor has changed and may be necrotic. Problem is I still have the mass in my groin.
Thanks,
Shane
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- February 20, 2015 at 9:07 am
Thanks for all the input. I've asked previously about intralesional treatment but it was dismissed. I will ask again next week at my appointment. I like the sound of that shock therapy too. I'm currently on Keytruda so I doubt that I can switch just yet.
I was also curious about filtering these tumors naturally, or in combination with current treatment. The recent scans have shown the density of this tumor has changed and may be necrotic. Problem is I still have the mass in my groin.
Thanks,
Shane
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- December 18, 2014 at 5:24 pm
This is a quick inspirational video at melanoma international that reminds us that we all can overcome this disease. So many people have been where we are at. Positive thinking helps, and it's good to take time to reinforce our goals.
Thanks,
Shane
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- December 18, 2014 at 5:24 pm
This is a quick inspirational video at melanoma international that reminds us that we all can overcome this disease. So many people have been where we are at. Positive thinking helps, and it's good to take time to reinforce our goals.
Thanks,
Shane
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- December 18, 2014 at 5:24 pm
This is a quick inspirational video at melanoma international that reminds us that we all can overcome this disease. So many people have been where we are at. Positive thinking helps, and it's good to take time to reinforce our goals.
Thanks,
Shane
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- November 8, 2014 at 3:03 am
Hi Artie,
I know it's difficult to correspond with the NIH. I'm currently in a waiting period with the TIL trial but they sent me home to get chemo/radiation. About two years ago I was trying to get into the TIL program but it was so difficult to correspond with them I ended up going with a different option. They had all my notes, scans, etc and each time I called them they said they would call back, no response. First thing I would definitely reach out to your current oncologist and ask them to contact a doctor at the NIH or Dr. Rosenberg directly. If your oncologist will call on your behalf that will help.
As far as washouts, I know my last treatment of PD1 was August 19th and I did get accepted into a trial in August. I then had to go for the surgery and then while you wait to see if your cells grow, you are then washing out. I believe my surgery was September 9th. So I don't think you necessarily have to have a washout before getting accepted. But you do need a somewhat of washout to remove one of your tumors for the TIL. I remember the doctors wouldn't take my tumor when I was accepted because I had to come back two weeks later. I hope that makes sense at all.
Good luck,
Shane
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- November 8, 2014 at 3:03 am
Hi Artie,
I know it's difficult to correspond with the NIH. I'm currently in a waiting period with the TIL trial but they sent me home to get chemo/radiation. About two years ago I was trying to get into the TIL program but it was so difficult to correspond with them I ended up going with a different option. They had all my notes, scans, etc and each time I called them they said they would call back, no response. First thing I would definitely reach out to your current oncologist and ask them to contact a doctor at the NIH or Dr. Rosenberg directly. If your oncologist will call on your behalf that will help.
As far as washouts, I know my last treatment of PD1 was August 19th and I did get accepted into a trial in August. I then had to go for the surgery and then while you wait to see if your cells grow, you are then washing out. I believe my surgery was September 9th. So I don't think you necessarily have to have a washout before getting accepted. But you do need a somewhat of washout to remove one of your tumors for the TIL. I remember the doctors wouldn't take my tumor when I was accepted because I had to come back two weeks later. I hope that makes sense at all.
Good luck,
Shane
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- November 8, 2014 at 3:03 am
Hi Artie,
I know it's difficult to correspond with the NIH. I'm currently in a waiting period with the TIL trial but they sent me home to get chemo/radiation. About two years ago I was trying to get into the TIL program but it was so difficult to correspond with them I ended up going with a different option. They had all my notes, scans, etc and each time I called them they said they would call back, no response. First thing I would definitely reach out to your current oncologist and ask them to contact a doctor at the NIH or Dr. Rosenberg directly. If your oncologist will call on your behalf that will help.
As far as washouts, I know my last treatment of PD1 was August 19th and I did get accepted into a trial in August. I then had to go for the surgery and then while you wait to see if your cells grow, you are then washing out. I believe my surgery was September 9th. So I don't think you necessarily have to have a washout before getting accepted. But you do need a somewhat of washout to remove one of your tumors for the TIL. I remember the doctors wouldn't take my tumor when I was accepted because I had to come back two weeks later. I hope that makes sense at all.
Good luck,
Shane
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- February 22, 2015 at 9:56 pm
I've heard IL2 is pretty rough, toxic, etc. But if I remember correctly that NRAS mutation does respond to IL2 better than other mutations. Worth researching that connection. NIH is difficult to get into their trials.
Good luck,
Shane
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- February 22, 2015 at 9:56 pm
I've heard IL2 is pretty rough, toxic, etc. But if I remember correctly that NRAS mutation does respond to IL2 better than other mutations. Worth researching that connection. NIH is difficult to get into their trials.
Good luck,
Shane
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- February 22, 2015 at 9:56 pm
I've heard IL2 is pretty rough, toxic, etc. But if I remember correctly that NRAS mutation does respond to IL2 better than other mutations. Worth researching that connection. NIH is difficult to get into their trials.
Good luck,
Shane
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- November 8, 2014 at 6:43 am
I don't know if MDA is less stringent than NIH, but the more I think it the more true it is. Nearly a year ago I went to MDA and had a small tumor taken out. They right away offered testing my tumor to grow TIL's. Unfortunately I was coming off a year on BRAF Zelboraf and apparently that changes the tumor. So my TIL's did not grow. After 5 months this year coming off Anti-PD1 my tumor had enough Tcells to grow for the TIL program.
Either way, Artie, you should definitely check out MD Anderson and see if you can go there for TIL if the NIH is giving you the run around.
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- November 8, 2014 at 6:43 am
I don't know if MDA is less stringent than NIH, but the more I think it the more true it is. Nearly a year ago I went to MDA and had a small tumor taken out. They right away offered testing my tumor to grow TIL's. Unfortunately I was coming off a year on BRAF Zelboraf and apparently that changes the tumor. So my TIL's did not grow. After 5 months this year coming off Anti-PD1 my tumor had enough Tcells to grow for the TIL program.
Either way, Artie, you should definitely check out MD Anderson and see if you can go there for TIL if the NIH is giving you the run around.
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- November 8, 2014 at 6:43 am
I don't know if MDA is less stringent than NIH, but the more I think it the more true it is. Nearly a year ago I went to MDA and had a small tumor taken out. They right away offered testing my tumor to grow TIL's. Unfortunately I was coming off a year on BRAF Zelboraf and apparently that changes the tumor. So my TIL's did not grow. After 5 months this year coming off Anti-PD1 my tumor had enough Tcells to grow for the TIL program.
Either way, Artie, you should definitely check out MD Anderson and see if you can go there for TIL if the NIH is giving you the run around.
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