› Forums › General Melanoma Community › Roll call Anti-Pd1 trial participants
- This topic has 39 replies, 9 voices, and was last updated 11 years, 11 months ago by
Anonymous1.
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- April 16, 2012 at 4:25 am
Please list which trial you're on, date started, and where and next scans, plus any wise effect or results info you want to share. Lots of us are on this and some of the 12 week scans are showing great results.
Robert B. started March 15, UCSF, scans June 5. Just had 3rd infusion, some bone and muscle ache and slight rash. Not a problem.
Please list which trial you're on, date started, and where and next scans, plus any wise effect or results info you want to share. Lots of us are on this and some of the 12 week scans are showing great results.
Robert B. started March 15, UCSF, scans June 5. Just had 3rd infusion, some bone and muscle ache and slight rash. Not a problem.
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- April 17, 2012 at 3:39 am
Margo – on Merck 3475. Just had 12 week scan. Considered a partial responder with reduction in existing tumors of approximately 50%. More importantly no new spots in brain, lungs or elsewhere. Have experienced some very minor side effects hardly worth mentioning — gastrointestinal issues, a slight rash early on, and — more recently — muscle aches. Next scan is in July. Feeling optimistic! -
- April 17, 2012 at 3:39 am
Margo – on Merck 3475. Just had 12 week scan. Considered a partial responder with reduction in existing tumors of approximately 50%. More importantly no new spots in brain, lungs or elsewhere. Have experienced some very minor side effects hardly worth mentioning — gastrointestinal issues, a slight rash early on, and — more recently — muscle aches. Next scan is in July. Feeling optimistic! -
- April 17, 2012 at 3:39 am
Margo – on Merck 3475. Just had 12 week scan. Considered a partial responder with reduction in existing tumors of approximately 50%. More importantly no new spots in brain, lungs or elsewhere. Have experienced some very minor side effects hardly worth mentioning — gastrointestinal issues, a slight rash early on, and — more recently — muscle aches. Next scan is in July. Feeling optimistic! -
- April 19, 2012 at 4:17 am
Started MDX1106 and vaccines at Moffitt, Tampa, FL…12/29/10. Vaccines and antiPD1 every 2 weeks for 6 months, now antiPD1 only every 3 months for a total of 24 months. Scans every 3 months throughout. Was Stage IV resected at start. Still NED. Next scans and treatment in June. c
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- April 19, 2012 at 4:17 am
Started MDX1106 and vaccines at Moffitt, Tampa, FL…12/29/10. Vaccines and antiPD1 every 2 weeks for 6 months, now antiPD1 only every 3 months for a total of 24 months. Scans every 3 months throughout. Was Stage IV resected at start. Still NED. Next scans and treatment in June. c
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- April 19, 2012 at 4:17 am
Started MDX1106 and vaccines at Moffitt, Tampa, FL…12/29/10. Vaccines and antiPD1 every 2 weeks for 6 months, now antiPD1 only every 3 months for a total of 24 months. Scans every 3 months throughout. Was Stage IV resected at start. Still NED. Next scans and treatment in June. c
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- May 14, 2012 at 6:37 am
My first 8 week scan showed 20% tumor reduction. I’m on CT-011 and go for another scan in 3 weeks.-
- May 19, 2012 at 5:15 pm
Hi Tracy,
I was on the CT-011 trial and had no response. I also understood the entire trial was suspended for evaluation, and that there was almost no evidence of anyone getting a positive response (at least 50 people were enrolled, perhaps more). As far as I know, you are the only possible responder. I am very interested to know more about your situation if you can tell me, either in an answer here, or in a personal email if you prefer. Apparently you were on Ipi in 2010, and NED after until this one node came back. I gather you are receiving treatment at Nashville (Dr. Sossman?), and wonder if you have heard of anyone else getting a response to this drug there. It is quite important to know whatever we can learn. If yours is a real and continuing response, it means this drug may be useful against melanoma. If there is some question about it at all, we may be able to argue we can get on other anti-PD1 trials down the line.
Best,
Jonathan
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- May 19, 2012 at 6:04 pm
Hi Jonathan,
That is very interesting about CT-011.
How many people at your site location were on your trial & got no response??? Has you doctor confirmed to you that no one is getting a response with melanoma??
It sounds like Tracy is still getting the drug. How is that possible if the trial was suspended??
David
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- May 19, 2012 at 6:04 pm
Hi Jonathan,
That is very interesting about CT-011.
How many people at your site location were on your trial & got no response??? Has you doctor confirmed to you that no one is getting a response with melanoma??
It sounds like Tracy is still getting the drug. How is that possible if the trial was suspended??
David
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- May 19, 2012 at 6:04 pm
Hi Jonathan,
That is very interesting about CT-011.
How many people at your site location were on your trial & got no response??? Has you doctor confirmed to you that no one is getting a response with melanoma??
It sounds like Tracy is still getting the drug. How is that possible if the trial was suspended??
David
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- May 19, 2012 at 5:15 pm
Hi Tracy,
I was on the CT-011 trial and had no response. I also understood the entire trial was suspended for evaluation, and that there was almost no evidence of anyone getting a positive response (at least 50 people were enrolled, perhaps more). As far as I know, you are the only possible responder. I am very interested to know more about your situation if you can tell me, either in an answer here, or in a personal email if you prefer. Apparently you were on Ipi in 2010, and NED after until this one node came back. I gather you are receiving treatment at Nashville (Dr. Sossman?), and wonder if you have heard of anyone else getting a response to this drug there. It is quite important to know whatever we can learn. If yours is a real and continuing response, it means this drug may be useful against melanoma. If there is some question about it at all, we may be able to argue we can get on other anti-PD1 trials down the line.
Best,
Jonathan
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- May 19, 2012 at 5:15 pm
Hi Tracy,
I was on the CT-011 trial and had no response. I also understood the entire trial was suspended for evaluation, and that there was almost no evidence of anyone getting a positive response (at least 50 people were enrolled, perhaps more). As far as I know, you are the only possible responder. I am very interested to know more about your situation if you can tell me, either in an answer here, or in a personal email if you prefer. Apparently you were on Ipi in 2010, and NED after until this one node came back. I gather you are receiving treatment at Nashville (Dr. Sossman?), and wonder if you have heard of anyone else getting a response to this drug there. It is quite important to know whatever we can learn. If yours is a real and continuing response, it means this drug may be useful against melanoma. If there is some question about it at all, we may be able to argue we can get on other anti-PD1 trials down the line.
Best,
Jonathan
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- May 21, 2012 at 6:28 pm
Hi there Jonathan,
You got most of my history correct, except early in 2011 we discovered a soft tissue tumor in my pelvis which is inoperable.
After Ipi I did the B-RAF inhibitor and it worked wonders on my tumor! I had a lot of difficulty with side effects then I had tumor progression.
I believe I was one of the last people to enter the Anti-PD1 trial at Nashville and then the study closed (stopped accruing patients).
I think my minimal (not even partial) response was quite a surprise to me and my medical team! We were not really expecting it. The location of my tumor is such that I can feel it when it's bigger and smaller so I really already knew the scan would confirm that it had reduced in size.
I'm not sure how the other 13 or so are doing.
All I know is there sometimes is no clear explanation of why a drug works and why it doesn't. My friend in AZ is one of the only responders to Sorafanib. She's maintained stable tumors for 5 years!
Prayer works and keeping a positive attitude and knowing that God is the driver on this highway helps a great deal!!!
May God bless and keep you!
Tracy
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- May 21, 2012 at 9:59 pm
Thanks so much, Tracy, for your reply and good wishes – they mean a lot, as you know.
How many infusions of CT-011 did you get, or are you still getting them? When I went on, they said it would go every 2 weeks for up to a year (I quit after 10 weeks, or 5 infusions). From what I understand (a lot of it probably internet chatter), you may be the only person in the USA who has gotten a positive response.
With all best wishes,
Jonathan
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- May 21, 2012 at 9:59 pm
Thanks so much, Tracy, for your reply and good wishes – they mean a lot, as you know.
How many infusions of CT-011 did you get, or are you still getting them? When I went on, they said it would go every 2 weeks for up to a year (I quit after 10 weeks, or 5 infusions). From what I understand (a lot of it probably internet chatter), you may be the only person in the USA who has gotten a positive response.
With all best wishes,
Jonathan
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- May 21, 2012 at 9:59 pm
Thanks so much, Tracy, for your reply and good wishes – they mean a lot, as you know.
How many infusions of CT-011 did you get, or are you still getting them? When I went on, they said it would go every 2 weeks for up to a year (I quit after 10 weeks, or 5 infusions). From what I understand (a lot of it probably internet chatter), you may be the only person in the USA who has gotten a positive response.
With all best wishes,
Jonathan
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- May 21, 2012 at 6:28 pm
Hi there Jonathan,
You got most of my history correct, except early in 2011 we discovered a soft tissue tumor in my pelvis which is inoperable.
After Ipi I did the B-RAF inhibitor and it worked wonders on my tumor! I had a lot of difficulty with side effects then I had tumor progression.
I believe I was one of the last people to enter the Anti-PD1 trial at Nashville and then the study closed (stopped accruing patients).
I think my minimal (not even partial) response was quite a surprise to me and my medical team! We were not really expecting it. The location of my tumor is such that I can feel it when it's bigger and smaller so I really already knew the scan would confirm that it had reduced in size.
I'm not sure how the other 13 or so are doing.
All I know is there sometimes is no clear explanation of why a drug works and why it doesn't. My friend in AZ is one of the only responders to Sorafanib. She's maintained stable tumors for 5 years!
Prayer works and keeping a positive attitude and knowing that God is the driver on this highway helps a great deal!!!
May God bless and keep you!
Tracy
-
- May 21, 2012 at 6:28 pm
Hi there Jonathan,
You got most of my history correct, except early in 2011 we discovered a soft tissue tumor in my pelvis which is inoperable.
After Ipi I did the B-RAF inhibitor and it worked wonders on my tumor! I had a lot of difficulty with side effects then I had tumor progression.
I believe I was one of the last people to enter the Anti-PD1 trial at Nashville and then the study closed (stopped accruing patients).
I think my minimal (not even partial) response was quite a surprise to me and my medical team! We were not really expecting it. The location of my tumor is such that I can feel it when it's bigger and smaller so I really already knew the scan would confirm that it had reduced in size.
I'm not sure how the other 13 or so are doing.
All I know is there sometimes is no clear explanation of why a drug works and why it doesn't. My friend in AZ is one of the only responders to Sorafanib. She's maintained stable tumors for 5 years!
Prayer works and keeping a positive attitude and knowing that God is the driver on this highway helps a great deal!!!
May God bless and keep you!
Tracy
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