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- This topic has 18 replies, 3 voices, and was last updated 12 years, 5 months ago by
chris p.
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- July 8, 2013 at 5:50 pm
A very good friend of mine has had some new developements and I am looking for some direction to help her. She was diagnosed 16 years ago and had lymph node resection. about 6 years ago there was recurrance and she went through interfuron treatment. this brought her to last year when they found spots on her lung and abdomen. With Dr Kirkwood in PA she completed the full trial of interlukin 2 with some shrinkage and no progression.
A very good friend of mine has had some new developements and I am looking for some direction to help her. She was diagnosed 16 years ago and had lymph node resection. about 6 years ago there was recurrance and she went through interfuron treatment. this brought her to last year when they found spots on her lung and abdomen. With Dr Kirkwood in PA she completed the full trial of interlukin 2 with some shrinkage and no progression.
As of last week (1 month after finishing trial), scans found lungs and groin had grown and new spot on breast. So I am here to ask what is next. She has been presented with several options but I was hoping to find out from someone who has been there what the best next step is.
Thank you in advance for all your help
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- July 9, 2013 at 1:41 am
Thank you for standing by your friend; it is not easy.
Here are some good things: For whatever reason be it through treatments or time; one thing is on her side and that is as of right now she has beat the odds by all measure.
The bad thing is the torment of what to do next after a success.
Having done IL2 myself, my first question would be how many bags did she do and is it an option to do some more?
Many here, including myself have went beyond protocol with IL2 and are still here.
What would be helpfull is to know what options have been presented.
Again, thank you for standing by your friend…………..not everyone can.
Cheers,
Charlie S
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- July 9, 2013 at 1:41 am
Thank you for standing by your friend; it is not easy.
Here are some good things: For whatever reason be it through treatments or time; one thing is on her side and that is as of right now she has beat the odds by all measure.
The bad thing is the torment of what to do next after a success.
Having done IL2 myself, my first question would be how many bags did she do and is it an option to do some more?
Many here, including myself have went beyond protocol with IL2 and are still here.
What would be helpfull is to know what options have been presented.
Again, thank you for standing by your friend…………..not everyone can.
Cheers,
Charlie S
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- July 9, 2013 at 1:41 am
Thank you for standing by your friend; it is not easy.
Here are some good things: For whatever reason be it through treatments or time; one thing is on her side and that is as of right now she has beat the odds by all measure.
The bad thing is the torment of what to do next after a success.
Having done IL2 myself, my first question would be how many bags did she do and is it an option to do some more?
Many here, including myself have went beyond protocol with IL2 and are still here.
What would be helpfull is to know what options have been presented.
Again, thank you for standing by your friend…………..not everyone can.
Cheers,
Charlie S
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- July 9, 2013 at 2:19 am
Is her doc, Dr. John Kirkwood at UPMC? If so that would indicates she's beeing seen by a melanoma specialist (he's director of the the Melanoma Center at UPMC), and that she's being seen at an NCI-designated cancer center (UPMC). Those would be 2 very good indicators, at a distance at least, that she's probably getting a high level of care.
It might also help to know the doc's reasoning for any particular treatment options he's recommending, since often some cases have different issues than others.
Charlie understands and says the rest better than I do.
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- July 9, 2013 at 2:19 am
Is her doc, Dr. John Kirkwood at UPMC? If so that would indicates she's beeing seen by a melanoma specialist (he's director of the the Melanoma Center at UPMC), and that she's being seen at an NCI-designated cancer center (UPMC). Those would be 2 very good indicators, at a distance at least, that she's probably getting a high level of care.
It might also help to know the doc's reasoning for any particular treatment options he's recommending, since often some cases have different issues than others.
Charlie understands and says the rest better than I do.
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- July 9, 2013 at 2:19 am
Is her doc, Dr. John Kirkwood at UPMC? If so that would indicates she's beeing seen by a melanoma specialist (he's director of the the Melanoma Center at UPMC), and that she's being seen at an NCI-designated cancer center (UPMC). Those would be 2 very good indicators, at a distance at least, that she's probably getting a high level of care.
It might also help to know the doc's reasoning for any particular treatment options he's recommending, since often some cases have different issues than others.
Charlie understands and says the rest better than I do.
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- July 10, 2013 at 3:07 pm
For your friend, one tumor characteristic restricts use to only about 50% of patients, is whether the tumors test positive or negative for a BRAF mutation. At the facility she's going, that's almost certain to have been tested.
The treatments getting the most attention right now are in clinical trials, and do not require that mutation. One type of agent is anti-PD1. The 2 that are furthest along in trials are Nivolumab (BMS) and Lambrolizumab (Merck). Another trial is combining Yervoy (FDA approved) with Nivolumab. Another type of agent type called Anti-PDL1 (not anti-PD1) is also generating "buzz" — 1 under trial is MDX-1105 (from BMS). Another new type of agent getting some positive buzz (in very early trial) is a so-called "Antibody-Drug Conjugate" or ADC from Genentech, called DEDN6526A.
Maybe some of these are options on your friend's list. There are probably some other promising new treatments on trial besides the list above. And maybe the FDA approved (2011) Yervoy is on that list too. It gets less buzz now than the treatments above, but is proven to induce durable responses to (like every other agent) a subset of patients.
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- July 10, 2013 at 3:07 pm
For your friend, one tumor characteristic restricts use to only about 50% of patients, is whether the tumors test positive or negative for a BRAF mutation. At the facility she's going, that's almost certain to have been tested.
The treatments getting the most attention right now are in clinical trials, and do not require that mutation. One type of agent is anti-PD1. The 2 that are furthest along in trials are Nivolumab (BMS) and Lambrolizumab (Merck). Another trial is combining Yervoy (FDA approved) with Nivolumab. Another type of agent type called Anti-PDL1 (not anti-PD1) is also generating "buzz" — 1 under trial is MDX-1105 (from BMS). Another new type of agent getting some positive buzz (in very early trial) is a so-called "Antibody-Drug Conjugate" or ADC from Genentech, called DEDN6526A.
Maybe some of these are options on your friend's list. There are probably some other promising new treatments on trial besides the list above. And maybe the FDA approved (2011) Yervoy is on that list too. It gets less buzz now than the treatments above, but is proven to induce durable responses to (like every other agent) a subset of patients.
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- July 10, 2013 at 3:07 pm
For your friend, one tumor characteristic restricts use to only about 50% of patients, is whether the tumors test positive or negative for a BRAF mutation. At the facility she's going, that's almost certain to have been tested.
The treatments getting the most attention right now are in clinical trials, and do not require that mutation. One type of agent is anti-PD1. The 2 that are furthest along in trials are Nivolumab (BMS) and Lambrolizumab (Merck). Another trial is combining Yervoy (FDA approved) with Nivolumab. Another type of agent type called Anti-PDL1 (not anti-PD1) is also generating "buzz" — 1 under trial is MDX-1105 (from BMS). Another new type of agent getting some positive buzz (in very early trial) is a so-called "Antibody-Drug Conjugate" or ADC from Genentech, called DEDN6526A.
Maybe some of these are options on your friend's list. There are probably some other promising new treatments on trial besides the list above. And maybe the FDA approved (2011) Yervoy is on that list too. It gets less buzz now than the treatments above, but is proven to induce durable responses to (like every other agent) a subset of patients.
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- July 9, 2013 at 3:06 pm
She did the high dose clinical trial at Hillman MC in Pittsburgh. Each week she managed 7-8 doses.
There are a few options and she is leaning towards ippy with interferon. there is another option that is a vaccine I will have to look at that again for the name of it.
I saw my husband through pancreatic cancer 7 years ago and the discussion board I followed was a wealth of information. I suggested treatment his oncologist didn't know about just from other's experience. It gave him a few extra months that I will always cherish.
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- July 9, 2013 at 3:06 pm
She did the high dose clinical trial at Hillman MC in Pittsburgh. Each week she managed 7-8 doses.
There are a few options and she is leaning towards ippy with interferon. there is another option that is a vaccine I will have to look at that again for the name of it.
I saw my husband through pancreatic cancer 7 years ago and the discussion board I followed was a wealth of information. I suggested treatment his oncologist didn't know about just from other's experience. It gave him a few extra months that I will always cherish.
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- July 9, 2013 at 3:06 pm
She did the high dose clinical trial at Hillman MC in Pittsburgh. Each week she managed 7-8 doses.
There are a few options and she is leaning towards ippy with interferon. there is another option that is a vaccine I will have to look at that again for the name of it.
I saw my husband through pancreatic cancer 7 years ago and the discussion board I followed was a wealth of information. I suggested treatment his oncologist didn't know about just from other's experience. It gave him a few extra months that I will always cherish.
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