Great melanoma article in the Washington Post today!

Thanks for your kind words, Josh. You can imagine, it all means a lot to me. I'm very pleased to have been able to tell this survival story. I've been very lucky in a lot of ways, beginning with having an indolent version of melanoma. So many of my cohort are no longer with us, it grieves me. But I take solace in the many unbelievable advances that continue to be made in melanoma treatment (and cancer more generally).  We are a transitional generation, and I can only hope the transition is completed soon!!

Best,

Jonathan

Thanks for your kind words, Josh. You can imagine, it all means a lot to me. I'm very pleased to have been able to tell this survival story. I've been very lucky in a lot of ways, beginning with having an indolent version of melanoma. So many of my cohort are no longer with us, it grieves me. But I take solace in the many unbelievable advances that continue to be made in melanoma treatment (and cancer more generally).  We are a transitional generation, and I can only hope the transition is completed soon!!

Best,

Jonathan

Thanks for your kind words, Josh. You can imagine, it all means a lot to me. I'm very pleased to have been able to tell this survival story. I've been very lucky in a lot of ways, beginning with having an indolent version of melanoma. So many of my cohort are no longer with us, it grieves me. But I take solace in the many unbelievable advances that continue to be made in melanoma treatment (and cancer more generally).  We are a transitional generation, and I can only hope the transition is completed soon!!

Best,

Jonathan

Jonathan-

You're quite welcome and well deserved. We need people lke you advocating and pushing the envelope for patients. It's turning out that I have indolent melanoma and like you it intially moved very slowly. Now the battle for me becomes a much bigger struggle. I remain hopeful and will continue to answer the bell as I have a young wife and small children to fight for. The frustrating thing is finidng trials, being excluded because of past tretaments etc… These aren't easy waters to navigate and your story puts it out in the nationalspotlight…I hope millions read your story!!!

Josh

Jonathan-

You're quite welcome and well deserved. We need people lke you advocating and pushing the envelope for patients. It's turning out that I have indolent melanoma and like you it intially moved very slowly. Now the battle for me becomes a much bigger struggle. I remain hopeful and will continue to answer the bell as I have a young wife and small children to fight for. The frustrating thing is finidng trials, being excluded because of past tretaments etc… These aren't easy waters to navigate and your story puts it out in the nationalspotlight…I hope millions read your story!!!

Josh

Jonathan-

You're quite welcome and well deserved. We need people lke you advocating and pushing the envelope for patients. It's turning out that I have indolent melanoma and like you it intially moved very slowly. Now the battle for me becomes a much bigger struggle. I remain hopeful and will continue to answer the bell as I have a young wife and small children to fight for. The frustrating thing is finidng trials, being excluded because of past tretaments etc… These aren't easy waters to navigate and your story puts it out in the nationalspotlight…I hope millions read your story!!!

Josh

Hi again, Josh,

Again, thanks for your kind words. It looks from what you've written that your history is somewhat like mine, with the temporary response to Ipi.  I do hope you're in the very best hands – you may well want to get a second or even third opinion, since things are so fluid these days (I don't know anything about specialists in the Chicago area). You should have many options available, and trying them together or in rapid sequence seems to be the way to go – as in the Ipi/Nivo combo (70% response rate), and doing radiation with anti-PD1. I know 2 patients a round here who are getting good responses with the injectable TVEK plus anti-PD1. And so on.

The article is getting a lot of reaction, which is really nice, and I hope it can help raise awareness of a number of things, the advances in  cancer treatment with immunotherapy being numero uno.

Now that I have a little soapbox to stand on, I can spout off a little. I didn't really know anything about it before, but the Goldwater Foundation (libertarian think-tank) is pushing "Right To Try" legislation around the country, which is proving wildly popular (for critically ill patients to try drugs that have only passed FDA safety tests – not any efficacy). After reading a little on this, I have to say I can't fully support it, because I believe any such experimental useage should be monitored by the FDA, and there must be some evidence (like in early phase II trials) of benefit/efficacy. Also, I worry that the legislation has nothing about the big question – who pays?? I think the manufacturers should make it free. That would also take away the incentives of the quacks to make hay off the new freedom to prescribe non-approved drugs. Remember laetrile? 70,000 breast cancer patients took that – no harm, but a LOT of scamming.

What the RTT push has done, that I am very happy about, is to push the FDA to speed up and streamline Expanded Access programs. They have to do something in response. The new "breakthrough drug" designation from 2012 allowed Merck to get its anti-PD1 approved in a record 3 years (and saved my life, among others). And they've made it a lot easier to apply for Expanded Access, when it was difficult before.

The thing I would want to push the FDA for is to allow patients who have been excluded from promising trials for common reasons (like my problematic prostate biopsy that millions of men my age have, or being treated with prior immunotherapy- Ipi) should be given those drugs as a parallel data collection effort. That would be far more compassionate, and would serve the purpose of finding out how the drug might work in the "real world" of clinical medicine. We all knew people who failed ipi were going to be among the first to want to get anti-PD1 after its approval – why not find out if there was a problem as part of the initial trial??? Same with men with problematic prostates. 

OK, that's enough.

Good luck, and be well.

Jonathan

Jonathan-

You get on the soap box with me anytime…I hear ya!! I couldn;t agree more with you about the exclusions from trials for previous therapy. One of these trials could potentially save numerous lives…mine included. I've been around Chicago to see specialists and currently going to MDA as I entered an Adoptive Cell trial that also include LD IL-2 and more ipi. I'm also not opposed to traveling to see other specialists…I was thinking about Ribas at UCLA…any others you'd suggest? I try seeing who has trials that may fit me. I haven't done ipi/Nivo combo but we're keeping that in back pocket. I've met quite a few people who have not responded to either as a monotheraphy but then went on to have great response on combo. I remain hopeful and inspired by people like yourself. I don't want a journey quite like yours but would love the end result!!! You certainly deserve it with everything you've been through…just a great story and a great man for what you're trying to accomplish on behalf of patients!!!

Josh

Jonathan-

You get on the soap box with me anytime…I hear ya!! I couldn;t agree more with you about the exclusions from trials for previous therapy. One of these trials could potentially save numerous lives…mine included. I've been around Chicago to see specialists and currently going to MDA as I entered an Adoptive Cell trial that also include LD IL-2 and more ipi. I'm also not opposed to traveling to see other specialists…I was thinking about Ribas at UCLA…any others you'd suggest? I try seeing who has trials that may fit me. I haven't done ipi/Nivo combo but we're keeping that in back pocket. I've met quite a few people who have not responded to either as a monotheraphy but then went on to have great response on combo. I remain hopeful and inspired by people like yourself. I don't want a journey quite like yours but would love the end result!!! You certainly deserve it with everything you've been through…just a great story and a great man for what you're trying to accomplish on behalf of patients!!!

Josh

Jonathan-

You get on the soap box with me anytime…I hear ya!! I couldn;t agree more with you about the exclusions from trials for previous therapy. One of these trials could potentially save numerous lives…mine included. I've been around Chicago to see specialists and currently going to MDA as I entered an Adoptive Cell trial that also include LD IL-2 and more ipi. I'm also not opposed to traveling to see other specialists…I was thinking about Ribas at UCLA…any others you'd suggest? I try seeing who has trials that may fit me. I haven't done ipi/Nivo combo but we're keeping that in back pocket. I've met quite a few people who have not responded to either as a monotheraphy but then went on to have great response on combo. I remain hopeful and inspired by people like yourself. I don't want a journey quite like yours but would love the end result!!! You certainly deserve it with everything you've been through…just a great story and a great man for what you're trying to accomplish on behalf of patients!!!

Josh

Hi again, Josh,

Again, thanks for your kind words. It looks from what you've written that your history is somewhat like mine, with the temporary response to Ipi.  I do hope you're in the very best hands – you may well want to get a second or even third opinion, since things are so fluid these days (I don't know anything about specialists in the Chicago area). You should have many options available, and trying them together or in rapid sequence seems to be the way to go – as in the Ipi/Nivo combo (70% response rate), and doing radiation with anti-PD1. I know 2 patients a round here who are getting good responses with the injectable TVEK plus anti-PD1. And so on.

The article is getting a lot of reaction, which is really nice, and I hope it can help raise awareness of a number of things, the advances in  cancer treatment with immunotherapy being numero uno.

Now that I have a little soapbox to stand on, I can spout off a little. I didn't really know anything about it before, but the Goldwater Foundation (libertarian think-tank) is pushing "Right To Try" legislation around the country, which is proving wildly popular (for critically ill patients to try drugs that have only passed FDA safety tests – not any efficacy). After reading a little on this, I have to say I can't fully support it, because I believe any such experimental useage should be monitored by the FDA, and there must be some evidence (like in early phase II trials) of benefit/efficacy. Also, I worry that the legislation has nothing about the big question – who pays?? I think the manufacturers should make it free. That would also take away the incentives of the quacks to make hay off the new freedom to prescribe non-approved drugs. Remember laetrile? 70,000 breast cancer patients took that – no harm, but a LOT of scamming.

What the RTT push has done, that I am very happy about, is to push the FDA to speed up and streamline Expanded Access programs. They have to do something in response. The new "breakthrough drug" designation from 2012 allowed Merck to get its anti-PD1 approved in a record 3 years (and saved my life, among others). And they've made it a lot easier to apply for Expanded Access, when it was difficult before.

The thing I would want to push the FDA for is to allow patients who have been excluded from promising trials for common reasons (like my problematic prostate biopsy that millions of men my age have, or being treated with prior immunotherapy- Ipi) should be given those drugs as a parallel data collection effort. That would be far more compassionate, and would serve the purpose of finding out how the drug might work in the "real world" of clinical medicine. We all knew people who failed ipi were going to be among the first to want to get anti-PD1 after its approval – why not find out if there was a problem as part of the initial trial??? Same with men with problematic prostates. 

OK, that's enough.

Good luck, and be well.

Jonathan

Hi again, Josh,

Again, thanks for your kind words. It looks from what you've written that your history is somewhat like mine, with the temporary response to Ipi.  I do hope you're in the very best hands – you may well want to get a second or even third opinion, since things are so fluid these days (I don't know anything about specialists in the Chicago area). You should have many options available, and trying them together or in rapid sequence seems to be the way to go – as in the Ipi/Nivo combo (70% response rate), and doing radiation with anti-PD1. I know 2 patients a round here who are getting good responses with the injectable TVEK plus anti-PD1. And so on.

The article is getting a lot of reaction, which is really nice, and I hope it can help raise awareness of a number of things, the advances in  cancer treatment with immunotherapy being numero uno.

Now that I have a little soapbox to stand on, I can spout off a little. I didn't really know anything about it before, but the Goldwater Foundation (libertarian think-tank) is pushing "Right To Try" legislation around the country, which is proving wildly popular (for critically ill patients to try drugs that have only passed FDA safety tests – not any efficacy). After reading a little on this, I have to say I can't fully support it, because I believe any such experimental useage should be monitored by the FDA, and there must be some evidence (like in early phase II trials) of benefit/efficacy. Also, I worry that the legislation has nothing about the big question – who pays?? I think the manufacturers should make it free. That would also take away the incentives of the quacks to make hay off the new freedom to prescribe non-approved drugs. Remember laetrile? 70,000 breast cancer patients took that – no harm, but a LOT of scamming.

What the RTT push has done, that I am very happy about, is to push the FDA to speed up and streamline Expanded Access programs. They have to do something in response. The new "breakthrough drug" designation from 2012 allowed Merck to get its anti-PD1 approved in a record 3 years (and saved my life, among others). And they've made it a lot easier to apply for Expanded Access, when it was difficult before.

The thing I would want to push the FDA for is to allow patients who have been excluded from promising trials for common reasons (like my problematic prostate biopsy that millions of men my age have, or being treated with prior immunotherapy- Ipi) should be given those drugs as a parallel data collection effort. That would be far more compassionate, and would serve the purpose of finding out how the drug might work in the "real world" of clinical medicine. We all knew people who failed ipi were going to be among the first to want to get anti-PD1 after its approval – why not find out if there was a problem as part of the initial trial??? Same with men with problematic prostates. 

OK, that's enough.

Good luck, and be well.

Jonathan