› Forums › General Melanoma Community › Last resort treatments ?
- This topic has 18 replies, 5 voices, and was last updated 8 years ago by
Mat.
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- April 8, 2016 at 11:11 am
I'm a member of a Facebook support group for melanoma patients in the UK. Some fellow members have failed to respond to ipilimumab / yervoy or pembrolizumab / keytruda. They have also tried dabrafenib but the disease has become resistant. TILs is available but not on the NHS and is expensive if you are self funding. T-vec is not available for patients who have bone or lung mets. What treatments or trials can I suggest to them ? Mel J
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- April 8, 2016 at 5:41 pm
Some of the most advanced trials and leaders in the Melanoma field are located at The Angeles Clinic, where Dr.Omid Hamid is located. Another is MD Anderson where Dr. Allison and Pam Sharma work on something called the moon shot program. Other names in the field are as follows, Dr.Mario Sznol (Yale Cancer center), Dr.Jedd Wolchok at Memorial Sloan Kettering (New York), Dr. Antoni Ribas (Jonsson Comprihensive cancer center UCLA), Dr.Jason Luke (University of Chicago), Dr. Jeffrey Weber at NYU Langone medical center formerly of Moffit cancer center in Tampa. There are all kinds of new drugs and trials available at these different centers. Some examples IDO +Ipi, IDO + PD-1, Pd-L1, vegf or Inos, Ox40,Lag-3, Gitr, CD137, Anti Vascular (Avastin). Combinations of Ipi and Pd-1 is still probably the most advanced with the best results so far!!!! I hope this was helpfull, you might also take a look at Bubbles (Celeste) blog, she keeps us all up to date on things!!! Ed
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- April 8, 2016 at 5:57 pm
Ed, many thanks for your helpful post. I follow Celeste's blog with interest and recognise some of the other names from reading about their work on Pubmed and onc live. iDO inhibitors seem to have gone quiet after being in the news a lot two yeas ago. I have suggested contacting MD Anderson to one patient but it's a huge step to take for patients in the UK. Back in 1996 I travelled to Santa Monica to participate in their cancervax trial, so I understand the support needed. Frankly most stage 4 patients in the UK are not likely to travel to the US for trials unless they have close friends or family there. Best regards. Mel J
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- April 8, 2016 at 5:57 pm
Ed, many thanks for your helpful post. I follow Celeste's blog with interest and recognise some of the other names from reading about their work on Pubmed and onc live. iDO inhibitors seem to have gone quiet after being in the news a lot two yeas ago. I have suggested contacting MD Anderson to one patient but it's a huge step to take for patients in the UK. Back in 1996 I travelled to Santa Monica to participate in their cancervax trial, so I understand the support needed. Frankly most stage 4 patients in the UK are not likely to travel to the US for trials unless they have close friends or family there. Best regards. Mel J
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- April 8, 2016 at 5:57 pm
Ed, many thanks for your helpful post. I follow Celeste's blog with interest and recognise some of the other names from reading about their work on Pubmed and onc live. iDO inhibitors seem to have gone quiet after being in the news a lot two yeas ago. I have suggested contacting MD Anderson to one patient but it's a huge step to take for patients in the UK. Back in 1996 I travelled to Santa Monica to participate in their cancervax trial, so I understand the support needed. Frankly most stage 4 patients in the UK are not likely to travel to the US for trials unless they have close friends or family there. Best regards. Mel J
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- April 8, 2016 at 5:41 pm
Some of the most advanced trials and leaders in the Melanoma field are located at The Angeles Clinic, where Dr.Omid Hamid is located. Another is MD Anderson where Dr. Allison and Pam Sharma work on something called the moon shot program. Other names in the field are as follows, Dr.Mario Sznol (Yale Cancer center), Dr.Jedd Wolchok at Memorial Sloan Kettering (New York), Dr. Antoni Ribas (Jonsson Comprihensive cancer center UCLA), Dr.Jason Luke (University of Chicago), Dr. Jeffrey Weber at NYU Langone medical center formerly of Moffit cancer center in Tampa. There are all kinds of new drugs and trials available at these different centers. Some examples IDO +Ipi, IDO + PD-1, Pd-L1, vegf or Inos, Ox40,Lag-3, Gitr, CD137, Anti Vascular (Avastin). Combinations of Ipi and Pd-1 is still probably the most advanced with the best results so far!!!! I hope this was helpfull, you might also take a look at Bubbles (Celeste) blog, she keeps us all up to date on things!!! Ed
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- April 8, 2016 at 5:41 pm
Some of the most advanced trials and leaders in the Melanoma field are located at The Angeles Clinic, where Dr.Omid Hamid is located. Another is MD Anderson where Dr. Allison and Pam Sharma work on something called the moon shot program. Other names in the field are as follows, Dr.Mario Sznol (Yale Cancer center), Dr.Jedd Wolchok at Memorial Sloan Kettering (New York), Dr. Antoni Ribas (Jonsson Comprihensive cancer center UCLA), Dr.Jason Luke (University of Chicago), Dr. Jeffrey Weber at NYU Langone medical center formerly of Moffit cancer center in Tampa. There are all kinds of new drugs and trials available at these different centers. Some examples IDO +Ipi, IDO + PD-1, Pd-L1, vegf or Inos, Ox40,Lag-3, Gitr, CD137, Anti Vascular (Avastin). Combinations of Ipi and Pd-1 is still probably the most advanced with the best results so far!!!! I hope this was helpfull, you might also take a look at Bubbles (Celeste) blog, she keeps us all up to date on things!!! Ed
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- April 8, 2016 at 6:01 pm
Mel,
It seems the most obvious next step is going onto the FDA approved combo of Yervoy/Opdivo (ipi/nivo). I was a total non-responder to each as single agents and everything else we threw at it in the past. I have now shown some immune response to the combo, and also added radiation treatment which trials are proving now to further improve immune response rates. If the combo is not available in UK, then get on a plane and come to U.S. Ed outlined above numerous destinations to get the best care possible.
Gary
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- April 8, 2016 at 6:01 pm
Mel,
It seems the most obvious next step is going onto the FDA approved combo of Yervoy/Opdivo (ipi/nivo). I was a total non-responder to each as single agents and everything else we threw at it in the past. I have now shown some immune response to the combo, and also added radiation treatment which trials are proving now to further improve immune response rates. If the combo is not available in UK, then get on a plane and come to U.S. Ed outlined above numerous destinations to get the best care possible.
Gary
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- April 8, 2016 at 6:01 pm
Mel,
It seems the most obvious next step is going onto the FDA approved combo of Yervoy/Opdivo (ipi/nivo). I was a total non-responder to each as single agents and everything else we threw at it in the past. I have now shown some immune response to the combo, and also added radiation treatment which trials are proving now to further improve immune response rates. If the combo is not available in UK, then get on a plane and come to U.S. Ed outlined above numerous destinations to get the best care possible.
Gary
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- April 8, 2016 at 6:40 pm
It's not just that simple – the NHS will most likely not pay for anything in the US. Treatments, scans, whatever.
Mel, I might look toward Germany. Much closer, tends to be quite progressive in treatments. THey may have the combo available, TIL or other clinical trials. I used to work for a medical device manufacturer who did a lot of business and research there. Treatments approved there (hyperthermia) that are not approved in the US. Seriously, if I was in Europe, I'd be at least looking at options there.
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- April 8, 2016 at 6:40 pm
It's not just that simple – the NHS will most likely not pay for anything in the US. Treatments, scans, whatever.
Mel, I might look toward Germany. Much closer, tends to be quite progressive in treatments. THey may have the combo available, TIL or other clinical trials. I used to work for a medical device manufacturer who did a lot of business and research there. Treatments approved there (hyperthermia) that are not approved in the US. Seriously, if I was in Europe, I'd be at least looking at options there.
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- April 8, 2016 at 6:40 pm
It's not just that simple – the NHS will most likely not pay for anything in the US. Treatments, scans, whatever.
Mel, I might look toward Germany. Much closer, tends to be quite progressive in treatments. THey may have the combo available, TIL or other clinical trials. I used to work for a medical device manufacturer who did a lot of business and research there. Treatments approved there (hyperthermia) that are not approved in the US. Seriously, if I was in Europe, I'd be at least looking at options there.
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