› Forums › Mucosal Melanoma Community › Immunotherapy Institutes / Research
- This topic has 24 replies, 5 voices, and was last updated 8 years ago by
JohnA.
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- April 17, 2016 at 5:18 pm
Hi all,
As a Stage IV melanoma patient with a particularly aggressive type (mucosal), I am trying to get my head around the proliferating field of immunotherapy – who are the major players, who is working collaboratively, and whether any one of the new (or older) institutes plan to share their data with patients so we can make the most informed decisions possible in our respective corners of the world without expensive second opinions/travel.
I realize I may be just dreaming, but still my innate idealism leads me to believe that the medical field will move in the direction of information sharing and collaboration over competition. I am particularly hopeful that the new Parker Institute will be a model for this approach.
But first, to identify where the immunotherapy breakthroughs are/will be taking place nationwide (and even worldwide), and how best to follow those advances? And in particular, as it relates to the melanoma community, where so many of the recent immunotherapy success stories originated.
I have dug up the following:
Parker Institute for Cancer Immunotherapy:
http://parker.org/initiatives/parker-iciBloomberg-Kimmel Institute for Cancer Immunotherapy:
http://www.hopkinsmedicine.org/kimmel_cancer_center/news_events/immunotherapy_institute/Roswell Park Center for Immunotherapy:
https://www.roswellpark.edu/research/center-immunotherapyLudwig Center for Cancer Immunotherapy:
https://www.mskcc.org/research-areas/programs-centers/ludwig-immunotherapyCancer Research Institute:
http://www.cancerresearch.orgIf anyone has others to add to the above list, please do share, as well as your thoughts/experiences with any of the above – very much appreciated!
I would also welcome stories about how others have approached their research once you or your loved one was diagnosed.
Thanks so much, and have a beaufiul (and hopeful) day!
- Replies
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- April 17, 2016 at 6:40 pm
UCSF is my local spot and is a part of the Parker Institute collaboration.
Here is UCSF link to their immunotherapy clinic:
https://www.ucsfhealth.org/clinics/cancer_immunotherapy_clinic/
Stanford is even closer to home for me, and also does great research in immunotherapy, but I chose UCSF instead because of all the great things I heard and read about UCSF Melanoma Center compared with Stanford. I am very happy with my decision.
Great list you've created. I agree with your idealism of information sharing over competition, I think that's exactly where things are headed, if not already there.
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- April 17, 2016 at 6:40 pm
UCSF is my local spot and is a part of the Parker Institute collaboration.
Here is UCSF link to their immunotherapy clinic:
https://www.ucsfhealth.org/clinics/cancer_immunotherapy_clinic/
Stanford is even closer to home for me, and also does great research in immunotherapy, but I chose UCSF instead because of all the great things I heard and read about UCSF Melanoma Center compared with Stanford. I am very happy with my decision.
Great list you've created. I agree with your idealism of information sharing over competition, I think that's exactly where things are headed, if not already there.
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- April 17, 2016 at 6:40 pm
UCSF is my local spot and is a part of the Parker Institute collaboration.
Here is UCSF link to their immunotherapy clinic:
https://www.ucsfhealth.org/clinics/cancer_immunotherapy_clinic/
Stanford is even closer to home for me, and also does great research in immunotherapy, but I chose UCSF instead because of all the great things I heard and read about UCSF Melanoma Center compared with Stanford. I am very happy with my decision.
Great list you've created. I agree with your idealism of information sharing over competition, I think that's exactly where things are headed, if not already there.
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- April 17, 2016 at 11:36 pm
Maria, I am not 100% sure what you are looking for but when you clink on the link to the Parker Institute there is a list of names on the right side of the home page. Several are the leaders of what I like to call of the speaker series. They are the messengers of Immunotherapy and the various new treatments available. You could add a few names to the list like Dr. Omid Hamid of the Angeles Clinic along with Dr.Michael Postow of Memorial Sloan Kettering. Dr. Jeffrey Weber, Dr.Charles Drake, Dr.Patrick Hwu of M.D.Anderson , Dr.Mario Sznol, Dr.Pam Sharma M.D. Anderson, Dr.Jim Allison M.D. Anderson, Dr.Jedd Wolchok Memorial sloan Kettering, Dr.Antoni Ribas UCLA. Also for any one that is new to the Melanoma game, you really can't get a better source of information along with some personal views than the blog that Celeste (bubbles ) has and shares with many from this forum. In regards to your hope of the experts sharing there knowledge about Immunotherapy, I think that already exists in the forum of Oncology gatherings like ASCO in chicago every May-June. There are many more regional get togethers in the Oncology field as well. There are also web sites like Cancer Research Institute that have great sites, with up to date videos from the speaking experts like Jedd Wolchok. Great topic for a April weekend (sharing)!!!! Best Wishes from Ottawa Canada!!! Ed
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- April 19, 2016 at 7:23 pm
Thank you Ed, for the terrific list of additional names in the Melanoma / Immunotherapy field. Will definitely start a record for my own files to be best prepared for whatever the future brings in my particular case. Tomorrow I get results of my April scans (taken yesterday) and will have a better grip of what's in store for me.
As far as congregate sources of information, on my Wish List is access to databases that these specialists are using, because I really do believe that personalized cancer treatment is the direction of the future, and we all have our particular lens to look through that may not be the same as researchers who by mandate look at us in "groups" or "patterns." Having conducted some of my own studies completely off-topic here, I have found rich & relevant info in qualitative data (more anecdotal) in combo with quantitative data (response to specific, pre-defined questions), but don't know where to start even poking around for what's possibly out there.
So again thanks for the info, and many more thanks for your best wishes :-)!!
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- April 19, 2016 at 7:23 pm
Thank you Ed, for the terrific list of additional names in the Melanoma / Immunotherapy field. Will definitely start a record for my own files to be best prepared for whatever the future brings in my particular case. Tomorrow I get results of my April scans (taken yesterday) and will have a better grip of what's in store for me.
As far as congregate sources of information, on my Wish List is access to databases that these specialists are using, because I really do believe that personalized cancer treatment is the direction of the future, and we all have our particular lens to look through that may not be the same as researchers who by mandate look at us in "groups" or "patterns." Having conducted some of my own studies completely off-topic here, I have found rich & relevant info in qualitative data (more anecdotal) in combo with quantitative data (response to specific, pre-defined questions), but don't know where to start even poking around for what's possibly out there.
So again thanks for the info, and many more thanks for your best wishes :-)!!
-
- April 19, 2016 at 7:23 pm
Thank you Ed, for the terrific list of additional names in the Melanoma / Immunotherapy field. Will definitely start a record for my own files to be best prepared for whatever the future brings in my particular case. Tomorrow I get results of my April scans (taken yesterday) and will have a better grip of what's in store for me.
As far as congregate sources of information, on my Wish List is access to databases that these specialists are using, because I really do believe that personalized cancer treatment is the direction of the future, and we all have our particular lens to look through that may not be the same as researchers who by mandate look at us in "groups" or "patterns." Having conducted some of my own studies completely off-topic here, I have found rich & relevant info in qualitative data (more anecdotal) in combo with quantitative data (response to specific, pre-defined questions), but don't know where to start even poking around for what's possibly out there.
So again thanks for the info, and many more thanks for your best wishes :-)!!
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- April 17, 2016 at 11:36 pm
Maria, I am not 100% sure what you are looking for but when you clink on the link to the Parker Institute there is a list of names on the right side of the home page. Several are the leaders of what I like to call of the speaker series. They are the messengers of Immunotherapy and the various new treatments available. You could add a few names to the list like Dr. Omid Hamid of the Angeles Clinic along with Dr.Michael Postow of Memorial Sloan Kettering. Dr. Jeffrey Weber, Dr.Charles Drake, Dr.Patrick Hwu of M.D.Anderson , Dr.Mario Sznol, Dr.Pam Sharma M.D. Anderson, Dr.Jim Allison M.D. Anderson, Dr.Jedd Wolchok Memorial sloan Kettering, Dr.Antoni Ribas UCLA. Also for any one that is new to the Melanoma game, you really can't get a better source of information along with some personal views than the blog that Celeste (bubbles ) has and shares with many from this forum. In regards to your hope of the experts sharing there knowledge about Immunotherapy, I think that already exists in the forum of Oncology gatherings like ASCO in chicago every May-June. There are many more regional get togethers in the Oncology field as well. There are also web sites like Cancer Research Institute that have great sites, with up to date videos from the speaking experts like Jedd Wolchok. Great topic for a April weekend (sharing)!!!! Best Wishes from Ottawa Canada!!! Ed
-
- April 17, 2016 at 11:36 pm
Maria, I am not 100% sure what you are looking for but when you clink on the link to the Parker Institute there is a list of names on the right side of the home page. Several are the leaders of what I like to call of the speaker series. They are the messengers of Immunotherapy and the various new treatments available. You could add a few names to the list like Dr. Omid Hamid of the Angeles Clinic along with Dr.Michael Postow of Memorial Sloan Kettering. Dr. Jeffrey Weber, Dr.Charles Drake, Dr.Patrick Hwu of M.D.Anderson , Dr.Mario Sznol, Dr.Pam Sharma M.D. Anderson, Dr.Jim Allison M.D. Anderson, Dr.Jedd Wolchok Memorial sloan Kettering, Dr.Antoni Ribas UCLA. Also for any one that is new to the Melanoma game, you really can't get a better source of information along with some personal views than the blog that Celeste (bubbles ) has and shares with many from this forum. In regards to your hope of the experts sharing there knowledge about Immunotherapy, I think that already exists in the forum of Oncology gatherings like ASCO in chicago every May-June. There are many more regional get togethers in the Oncology field as well. There are also web sites like Cancer Research Institute that have great sites, with up to date videos from the speaking experts like Jedd Wolchok. Great topic for a April weekend (sharing)!!!! Best Wishes from Ottawa Canada!!! Ed
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- April 18, 2016 at 1:36 am
Hi Maria – My wife also has Stage IV mucosal – I like the list you've put together, but one thing we've struglled with is in finding the best practitioners, not just the outhpiece or grant writers. So for example, she went to MD anderson to meet with Hwu, but was told he doesn't really see patients so she met with a very nice but also very young new doc. Tried to see Wolchok but was scheduled instead with Paul Chapman (who we really like and respect).
What do you guys think about the best practitioners out there? Do you think this is a valid observation? Maybe it's okay to be at the best institutions?
Also, not all immunotherapists are experienced with Mucosal, which is thought to behave differently than cutaneous although some I have heard argue that once it's metastatic then it's not so different from cutaneous….
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- April 19, 2016 at 7:38 pm
John, you hit on one of my exact concerns – because mucosal is so rare, we are lumped into the larger melanoma studies….BUT there has to be a collaborative database among top melanoma specialists that can be used to pull out reports specific to mucosal, and if not, WHEN will they work together to create one?! I have so many questions but without knowing what data fields have been collected, asking them is such a shot in a black hole….
I had a similar experience at Sloan, btw – tried to see Wolchok but was scheduled instead with Shoushtari, who is a very nice but very young doc. He seemed passionate about mucosal research though, and had specicfic ideas on experimental treatment, so will definitely keep an eye on what clinical trials he's able to push through all the bureaucracy….
I did not hear about the argument that once melanoma is metastic, it behaves the same for mucosal as cutaneous – I suppose that's a plus since I'm already metastic…? Maybe then we are lumped in the higher OS rate stat?
Thanks for following up John – please know your wife is in my prayers and I wish she & I some clarity as we navigate through this "sideline" melanoma status….
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- April 19, 2016 at 7:38 pm
John, you hit on one of my exact concerns – because mucosal is so rare, we are lumped into the larger melanoma studies….BUT there has to be a collaborative database among top melanoma specialists that can be used to pull out reports specific to mucosal, and if not, WHEN will they work together to create one?! I have so many questions but without knowing what data fields have been collected, asking them is such a shot in a black hole….
I had a similar experience at Sloan, btw – tried to see Wolchok but was scheduled instead with Shoushtari, who is a very nice but very young doc. He seemed passionate about mucosal research though, and had specicfic ideas on experimental treatment, so will definitely keep an eye on what clinical trials he's able to push through all the bureaucracy….
I did not hear about the argument that once melanoma is metastic, it behaves the same for mucosal as cutaneous – I suppose that's a plus since I'm already metastic…? Maybe then we are lumped in the higher OS rate stat?
Thanks for following up John – please know your wife is in my prayers and I wish she & I some clarity as we navigate through this "sideline" melanoma status….
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- April 22, 2016 at 4:47 am
As for Sloan, if I'm recalling this correctly, my wife discovered this week that if you see someone in their melanoma unit and that person refers you for immunotherapy, then you can meet with Dr. Wolchok or someone else on the immunology team.
Good luck!
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- April 22, 2016 at 4:47 am
As for Sloan, if I'm recalling this correctly, my wife discovered this week that if you see someone in their melanoma unit and that person refers you for immunotherapy, then you can meet with Dr. Wolchok or someone else on the immunology team.
Good luck!
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- April 22, 2016 at 4:47 am
As for Sloan, if I'm recalling this correctly, my wife discovered this week that if you see someone in their melanoma unit and that person refers you for immunotherapy, then you can meet with Dr. Wolchok or someone else on the immunology team.
Good luck!
-
- April 19, 2016 at 7:38 pm
John, you hit on one of my exact concerns – because mucosal is so rare, we are lumped into the larger melanoma studies….BUT there has to be a collaborative database among top melanoma specialists that can be used to pull out reports specific to mucosal, and if not, WHEN will they work together to create one?! I have so many questions but without knowing what data fields have been collected, asking them is such a shot in a black hole….
I had a similar experience at Sloan, btw – tried to see Wolchok but was scheduled instead with Shoushtari, who is a very nice but very young doc. He seemed passionate about mucosal research though, and had specicfic ideas on experimental treatment, so will definitely keep an eye on what clinical trials he's able to push through all the bureaucracy….
I did not hear about the argument that once melanoma is metastic, it behaves the same for mucosal as cutaneous – I suppose that's a plus since I'm already metastic…? Maybe then we are lumped in the higher OS rate stat?
Thanks for following up John – please know your wife is in my prayers and I wish she & I some clarity as we navigate through this "sideline" melanoma status….
-
- April 18, 2016 at 1:36 am
Hi Maria – My wife also has Stage IV mucosal – I like the list you've put together, but one thing we've struglled with is in finding the best practitioners, not just the outhpiece or grant writers. So for example, she went to MD anderson to meet with Hwu, but was told he doesn't really see patients so she met with a very nice but also very young new doc. Tried to see Wolchok but was scheduled instead with Paul Chapman (who we really like and respect).
What do you guys think about the best practitioners out there? Do you think this is a valid observation? Maybe it's okay to be at the best institutions?
Also, not all immunotherapists are experienced with Mucosal, which is thought to behave differently than cutaneous although some I have heard argue that once it's metastatic then it's not so different from cutaneous….
-
- April 18, 2016 at 1:36 am
Hi Maria – My wife also has Stage IV mucosal – I like the list you've put together, but one thing we've struglled with is in finding the best practitioners, not just the outhpiece or grant writers. So for example, she went to MD anderson to meet with Hwu, but was told he doesn't really see patients so she met with a very nice but also very young new doc. Tried to see Wolchok but was scheduled instead with Paul Chapman (who we really like and respect).
What do you guys think about the best practitioners out there? Do you think this is a valid observation? Maybe it's okay to be at the best institutions?
Also, not all immunotherapists are experienced with Mucosal, which is thought to behave differently than cutaneous although some I have heard argue that once it's metastatic then it's not so different from cutaneous….
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- April 18, 2016 at 1:27 pm
Maria – Like you, I am awed by the number of scientists worldwide who are working to find cures for cancer.
As a mucosal melanoma patient, however, I am well aware that we are not represented in the research data because there are too few people available to produce meaningful statistics. Mucosal patients are often permitted to participate in clinical trials but anything learned is by coincidence. It is therefore so important for us to have our treatment determined at the same cancer centers that participate in those studies so that patient responses that are merely "seen" might be applied to us even if they have not been "proven". Also, if we decide to participate in a clinical trial we need someone to gude us through to selection process. Our choice of and relationship with our physician is so critical.
There is something interesting going on in London in 2016. The Mucosal Melanoma Guidelines Project is holding a series on meetings to try to consolidate the fragmented information from trials and experiences involving mucosal patients and turn that information into treatment guidelines. The MRF is cited in the announcement that I saw – perhaps someone working with this site could provide more information.
Best wishes for you.
Mary
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- April 19, 2016 at 7:49 pm
Mary, wow, this is a very exciting initiative! I will definitely dig into this more, as this is exactly the kind of information sharing I am hoping to tap into. Because everything you've said is exactly on point – there are no meaningful stats on mucosal patients because the funding isn't there because it's so rare.
I am sharing the link to the Muscoal Melanoma Guidelines Project for anyone in the future interested in following:
http://melanomafocus.com/activities-2/mucosal-guidelines/
Thanks again Mary – and please stay in touch via this forum so we can keep sharing leads!!
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- April 19, 2016 at 7:49 pm
Mary, wow, this is a very exciting initiative! I will definitely dig into this more, as this is exactly the kind of information sharing I am hoping to tap into. Because everything you've said is exactly on point – there are no meaningful stats on mucosal patients because the funding isn't there because it's so rare.
I am sharing the link to the Muscoal Melanoma Guidelines Project for anyone in the future interested in following:
http://melanomafocus.com/activities-2/mucosal-guidelines/
Thanks again Mary – and please stay in touch via this forum so we can keep sharing leads!!
-
- April 19, 2016 at 7:49 pm
Mary, wow, this is a very exciting initiative! I will definitely dig into this more, as this is exactly the kind of information sharing I am hoping to tap into. Because everything you've said is exactly on point – there are no meaningful stats on mucosal patients because the funding isn't there because it's so rare.
I am sharing the link to the Muscoal Melanoma Guidelines Project for anyone in the future interested in following:
http://melanomafocus.com/activities-2/mucosal-guidelines/
Thanks again Mary – and please stay in touch via this forum so we can keep sharing leads!!
-
- April 18, 2016 at 1:27 pm
Maria – Like you, I am awed by the number of scientists worldwide who are working to find cures for cancer.
As a mucosal melanoma patient, however, I am well aware that we are not represented in the research data because there are too few people available to produce meaningful statistics. Mucosal patients are often permitted to participate in clinical trials but anything learned is by coincidence. It is therefore so important for us to have our treatment determined at the same cancer centers that participate in those studies so that patient responses that are merely "seen" might be applied to us even if they have not been "proven". Also, if we decide to participate in a clinical trial we need someone to gude us through to selection process. Our choice of and relationship with our physician is so critical.
There is something interesting going on in London in 2016. The Mucosal Melanoma Guidelines Project is holding a series on meetings to try to consolidate the fragmented information from trials and experiences involving mucosal patients and turn that information into treatment guidelines. The MRF is cited in the announcement that I saw – perhaps someone working with this site could provide more information.
Best wishes for you.
Mary
-
- April 18, 2016 at 1:27 pm
Maria – Like you, I am awed by the number of scientists worldwide who are working to find cures for cancer.
As a mucosal melanoma patient, however, I am well aware that we are not represented in the research data because there are too few people available to produce meaningful statistics. Mucosal patients are often permitted to participate in clinical trials but anything learned is by coincidence. It is therefore so important for us to have our treatment determined at the same cancer centers that participate in those studies so that patient responses that are merely "seen" might be applied to us even if they have not been "proven". Also, if we decide to participate in a clinical trial we need someone to gude us through to selection process. Our choice of and relationship with our physician is so critical.
There is something interesting going on in London in 2016. The Mucosal Melanoma Guidelines Project is holding a series on meetings to try to consolidate the fragmented information from trials and experiences involving mucosal patients and turn that information into treatment guidelines. The MRF is cited in the announcement that I saw – perhaps someone working with this site could provide more information.
Best wishes for you.
Mary
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