Anonymous1

I highly recommend Smilow's melanoma group on all accounts, without reservation. The two primary oncologists are Mario Sznol (clinic Tu-Thur) and Harriet Kluger (Mo-Wed). Both are excellent, but with different personalities – Mario is very direct (my doc), and Harriet's patients love her affectionate manner (hugs vs. handshakes). Look them up. They have been among the pioneers of immunotherapy. Veronica Chiang (neurosurgeon – gamma knife and craniotomy) is also top flight, again very approachable. The staff is also outstanding – I walk down the treatment halls and am greeted in a very warm and caring way by muliple nurses and other personnel, including the people who just take vitals. Even the volunteer masseuse has become a friend. The facilities are new (10 years old), all single rooms, with a couch etc. It feels like a boutique outfit, although Yale New Haven Hospital is not small. Smilow is a new essentially self-contained (but attached) building, which makes many things easier. Waiting times are not at all bad – 10 minutes usually, unless there's an emergency. Lab results are available online within 20 minutes of draw, and if you tell them you're from a long way away (I am 90 minutes away), they will schedule scans done in the morning and review with Mario or Harriet in the afternoon (official radiology report will come next day, again available on their portal). 

BTW, at one point, Mario had me seek second opinions at Dana Farber (Hodi), MSK,  as well as Deaconess and in those places I had to wait very long times (I was considering IL-2, and he wanted me to get other opinions before deciding to do it with him).. I was also initially treated at HUPenn. All are, or feel like, much larger, impersonal, and cumbersome bureaucratic outfits – I much prefer Smilow to all of them.

HOWEVER, the number one thing you must do is be comfortable with your oncologist – so I'd not want to change centers until you'd had a second opinion with either Sznol or Kluger (or both?).

I encourage you to seriously consider their care.

Jonahan F

Celeste, all these kind and thoughtful comments are well deserved.  And I am so glad that Jonathan and I have had a chance to meet you.  Love, Françoise (and Jonathan too).

I had my spleen removed 30 years ago as part of the treatment for Hodgkin's disease, with no negative impact.  An additional pneumonia vaccine as a precaution was recommended. 

I had my spleen removed 30 years ago as part of the treatment for Hodgkin's disease, with no negative impact.  An additional pneumonia vaccine as a precaution was recommended. 

I had my spleen removed 30 years ago as part of the treatment for Hodgkin's disease, with no negative impact.  An additional pneumonia vaccine as a precaution was recommended. 

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

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

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

My husband had to have SRS in September 2014 soon after starting Pembro, and is currently doing very well.  This is so exciting, isn't it Celeste ?  Best.  Françoise

My husband had to have SRS in September 2014 soon after starting Pembro, and is currently doing very well.  This is so exciting, isn't it Celeste ?  Best.  Françoise

My husband had to have SRS in September 2014 soon after starting Pembro, and is currently doing very well.  This is so exciting, isn't it Celeste ?  Best.  Françoise

This is really great news, and apparently it means those of us who failed the Curetech "PD1" trial (wasn't that everyone??) will not be excluded. At least, this is what has been reported a couple of hours ago on the Melanoma International Foundation forum by Catherine Poole. She reports that "other anti-PD1" failures are not exclusions. You may want to verify that with her, since it's not clear from the Merck release.