› Forums › General Melanoma Community › Immunotherapy Patient Forum
- This topic has 51 replies, 13 voices, and was last updated 9 years, 6 months ago by
oldblue.
- Post
-
- October 29, 2014 at 9:02 pm
I mentioned I would post something after returning from the immunotherapy conference so here goes. Sorry if it’s a little long but I know Joe will appreciate it ;).
I really enjoyed the Immunotherapy Patient Forum Hosted by GRACE and MRA in Chicago on Oct 26. They talked about having more of these in the future and if they do I highly recommend it. The presentations will be available online in a couple weeks so I won’t regurgitate all the presentations, nor could I if I wanted to, but I’ll try to list a couple things that struck me as interesting. I’ll post the link to the presentations when they do become available. Here’s a link to the agenda:
I think it was Dr. Pardoll from John Hopkins who talked about a renaissance occurring with vaccines partly driven by some success with combining them with anti-inhibitors. Expect to see more trials in the future.
Dr. Wolchok made a comment that especially struck a chord with me when he said, “Stable disease is OK, in fact it’s good.” He said this is an indication that the immune system is effectively working. One of the reasons I went to the conference was to see if I could get any answers on what the future holds for anti-PD1 patients with long term stable disease. Basically the answer was, “We just don’t know yet.” Guess I should have anticipated that but I wish every once in a while someone would say what their gut feeling is. I know why they don’t but it would be nice if they would. The only Dr. I have met along this journey that has done that for me is Dr. Weber at Moffitt. I did see a couple case studies presented which showed cases where tumors dramatically shrunk but never went away. When they were biopsied they basically found “battle field debris”. Apparently this “debris” is not very soluble and could stay there for a long time.
Most of us know melanoma has a very high mutation rate. A presenter talked about why some cancers respond to drugs like Anti-PD1 and others don’t. Each time a cancer cell mutates it expresses a different type of protein which gives the immune system another chance to recognize the cancer as the enemy. They think this might be one reason why melanoma and other cancers such as lung-cancer are responsive to immunotherapy. This highly mutative characteristic of melanoma topic also came up in discussing why in some patients some tumors respond while others continue to grow. They still cannot explain why this happens other than it being a result of the different mutations. One of the doctors advocated for patients who find themselves in this situation to consider donating their tumors to clinical study in the event they succumb to their disease. As you can imagine having a patient with some tumors responding and some not and being able to study those tumors to determine the differences could unlock the key to many mysteries. Apparently this type of tumor donation must occur within 6 hours of death. If you are interested in participating in something like this I would talk to your clinical study doctors. They didn’t give much detail about how this is done but if anyone thinks they might be interested and can’t get anywhere with their doctors let me know and I’ll reach out to MRA and see if they can shed more light. Along the lines of mutations and having some tumors that respond and some that don’t, it was emphasized the importance of repeating biopsies when new tumors grow in order to see what type of mutations and what type of antigens are present. I think this is more important to the clinical trial doctors than the patients because other than knowing the Braf mutation I’m not sure what we as patients can do with the knowledge of what antigens are being presented.
A couple forecasting stats thrown out by Dr. Pardol I thought were interesting: By 2025 70% or greater of patients with cancer will receive immunotherapy. Greater than 95% of immunotherapy potential has yet to be mined. Another quote that was attributed to Dr. Wolchok was that we are at the “end of the beginning of immunotherapy treatment.” I think what he means by this is we’ve just kinda finished the introduction of this Immunotherapy book and now you can expect things to really start happening.
Dr. Pardol talked about immunotherapy and the ability to create an immune system memory but stopped short of saying that’s what’s happening with any of the inhibitor blockers available now. He said combination therapy is the future. One thing Dr. Wolchok said that I thought was interesting is he never imagined that the Anti-PD1 drugs would be effective as they are. I think this is a reflection of how complicated and dynamic the immune system is and how surprising it was to him that only blocking one inhibitor would have such a profound influence not only with melanoma but a variety of cancers.
Dr. Hellmann gave a good presentation on the history of immunotherapy. During the presentation he mentioned a mouse study combining IPI and Tvec that’s had amazing results. Not sure if human trials have started but I think you can expect to see some in the future if not already. I learned during his presentation why all these drug names end with “mab”. “Mab” describes a monoclonal antibody (i.e. Ipilimumab , nivolumab, pembroluzimab)
During question and answer session the panel was asked if there was still a role for Interferon and IL-2. Panel seemed to agree there still was a role but leaning more toward combination with an inhibitor and more so if we can narrow which subset of patients will respond.
Panel talked about PD-1 and PD-L1 which I think they said are getting similar responses. I thought PD-1 was getting a little better response. Maybe Celeste can verify. One thing Dr. Wolchok said is we may see PD-1 and PD-L1 combination in the future. Sounded redundant to me but he said the ratio of PD-1 and PD-1 ligand is not a 1 to 1 ratio so some type of cocktail of anti-PD-1 and anti-PD-L1 at the appropriate ratio may have better results.
That’s all for now. All and all a great experience. It’s very uplifting to see the optimism in person of some of these great minds in the field of immunotherapy. The forum was first rate all the way from the colored printed binders of all the presentations they gave to all the attendees, the thumb drive they gave all the attendees which contained all presentations, and the amazing food they continued to put out all day. And all this for just a $25 registration fee. Amazing.
- Replies
-
-
- October 29, 2014 at 9:13 pm
Wow, Brian! What a great recap! I look forward to seeing the presentations when they become available. Thanks for going and keeping us informed.
Maggie
-
- October 30, 2014 at 2:09 am
I definitely like those long posts! And I'm also encouraged by what Dr. Wolchok said — I've heard similar things from my own doctors and others. Yes, frustrating to not know how long it will last, but I try to remind myself that it's better than what used to be considered the likely alternative.
Thanks for the report Brian, great information. Is this an annual event for MRA and is it always held in Chicago?
Joe
-
- October 30, 2014 at 2:09 am
I definitely like those long posts! And I'm also encouraged by what Dr. Wolchok said — I've heard similar things from my own doctors and others. Yes, frustrating to not know how long it will last, but I try to remind myself that it's better than what used to be considered the likely alternative.
Thanks for the report Brian, great information. Is this an annual event for MRA and is it always held in Chicago?
Joe
-
- October 30, 2014 at 3:23 am
Thanis for your well written and informative post. You're the best!
-
- October 30, 2014 at 3:23 am
Thanis for your well written and informative post. You're the best!
-
- October 30, 2014 at 3:23 am
Thanis for your well written and informative post. You're the best!
-
- October 31, 2014 at 12:38 am
Joe,
The folks from GRACE and MRA said this was the first forum they've done with a focus on the patient. The presentations were supposed to be tailored more toward a patient knowledge level although I have to admit I found them somewhat technical even after being in the game for a few years now. I think most newly diagnosed patients would have been overwhelmed. All the organizers mentioned they would like to do more in the future. I hope they do. I estimate there was only about 50 patients in attendence and at the melanoma breakout session there was maybe about 20. Not sure why Chicago was the location. I think GRACE is out of Seattle and MRA is out of DC. Maybe they decided to split the difference and go with Chicago.
Brian
-
- October 31, 2014 at 12:38 am
Joe,
The folks from GRACE and MRA said this was the first forum they've done with a focus on the patient. The presentations were supposed to be tailored more toward a patient knowledge level although I have to admit I found them somewhat technical even after being in the game for a few years now. I think most newly diagnosed patients would have been overwhelmed. All the organizers mentioned they would like to do more in the future. I hope they do. I estimate there was only about 50 patients in attendence and at the melanoma breakout session there was maybe about 20. Not sure why Chicago was the location. I think GRACE is out of Seattle and MRA is out of DC. Maybe they decided to split the difference and go with Chicago.
Brian
-
- October 31, 2014 at 12:38 am
Joe,
The folks from GRACE and MRA said this was the first forum they've done with a focus on the patient. The presentations were supposed to be tailored more toward a patient knowledge level although I have to admit I found them somewhat technical even after being in the game for a few years now. I think most newly diagnosed patients would have been overwhelmed. All the organizers mentioned they would like to do more in the future. I hope they do. I estimate there was only about 50 patients in attendence and at the melanoma breakout session there was maybe about 20. Not sure why Chicago was the location. I think GRACE is out of Seattle and MRA is out of DC. Maybe they decided to split the difference and go with Chicago.
Brian
-
- October 30, 2014 at 2:09 am
I definitely like those long posts! And I'm also encouraged by what Dr. Wolchok said — I've heard similar things from my own doctors and others. Yes, frustrating to not know how long it will last, but I try to remind myself that it's better than what used to be considered the likely alternative.
Thanks for the report Brian, great information. Is this an annual event for MRA and is it always held in Chicago?
Joe
-
- October 30, 2014 at 7:38 am
Very interesting — thanks so much for sharing. I'll definitely sign up next year if they include airfare in that $25 fee! 😉
-
- October 30, 2014 at 7:38 am
Very interesting — thanks so much for sharing. I'll definitely sign up next year if they include airfare in that $25 fee! 😉
-
- October 30, 2014 at 7:38 am
Very interesting — thanks so much for sharing. I'll definitely sign up next year if they include airfare in that $25 fee! 😉
-
- October 30, 2014 at 3:04 pm
Such a great report, Brian. Thanks so much for attending and getting the information back to the rest of us!!!
So far, in what I can find that is published, anti-Pd-L1 does not quite have the response rate that anti-PD1, both Nivo and Pembro, have demonstrated. BUT…it is early days for both, even more so for anti-PD-L1 and the folks speaking at the seminar certainly have much greater access to new data than I do!!! So, I'm all for that. I do think from my reading that combo's are going to be the treatment plan for the future. Combining anti-PD1 with ipi, LAG-3, anti-PD-L1 and others….so that no cracks or crannies of the immune pathways can be manipulated by melanoma!!!
The other points that you brought up from the discussions are things that have been bugging and intriguing me for some time. If we could find the answers to why some folks' melanoma is rather "indolent" (Like mine was from 2003 – 2010…where I managed just fine with no treatment other than surgery.) while at other times in the same patient, or in patients newly diagnosed….it spreads incredibly rapidly almost no matter what treatment is given! Why? Why? Why? Along the same line….Why is it some foks can go YEARS, not the norm for sure, but years with an incredible response to BRAF inhibitors, and then out of nowhere, develop a new lesion? As the experts were alluding to…I suspect that mutations play a huge role in all these scernarios. If we could get a real handle on that….and I think everyday does bring the science closer….melanoma would be a much less formidable enemy.
Lots to think about. Glad so many smart folks are working on it and glad folks like you will spread the word. Thanks, Brian. Celeste
-
- October 30, 2014 at 3:04 pm
Such a great report, Brian. Thanks so much for attending and getting the information back to the rest of us!!!
So far, in what I can find that is published, anti-Pd-L1 does not quite have the response rate that anti-PD1, both Nivo and Pembro, have demonstrated. BUT…it is early days for both, even more so for anti-PD-L1 and the folks speaking at the seminar certainly have much greater access to new data than I do!!! So, I'm all for that. I do think from my reading that combo's are going to be the treatment plan for the future. Combining anti-PD1 with ipi, LAG-3, anti-PD-L1 and others….so that no cracks or crannies of the immune pathways can be manipulated by melanoma!!!
The other points that you brought up from the discussions are things that have been bugging and intriguing me for some time. If we could find the answers to why some folks' melanoma is rather "indolent" (Like mine was from 2003 – 2010…where I managed just fine with no treatment other than surgery.) while at other times in the same patient, or in patients newly diagnosed….it spreads incredibly rapidly almost no matter what treatment is given! Why? Why? Why? Along the same line….Why is it some foks can go YEARS, not the norm for sure, but years with an incredible response to BRAF inhibitors, and then out of nowhere, develop a new lesion? As the experts were alluding to…I suspect that mutations play a huge role in all these scernarios. If we could get a real handle on that….and I think everyday does bring the science closer….melanoma would be a much less formidable enemy.
Lots to think about. Glad so many smart folks are working on it and glad folks like you will spread the word. Thanks, Brian. Celeste
-
- October 30, 2014 at 3:04 pm
Such a great report, Brian. Thanks so much for attending and getting the information back to the rest of us!!!
So far, in what I can find that is published, anti-Pd-L1 does not quite have the response rate that anti-PD1, both Nivo and Pembro, have demonstrated. BUT…it is early days for both, even more so for anti-PD-L1 and the folks speaking at the seminar certainly have much greater access to new data than I do!!! So, I'm all for that. I do think from my reading that combo's are going to be the treatment plan for the future. Combining anti-PD1 with ipi, LAG-3, anti-PD-L1 and others….so that no cracks or crannies of the immune pathways can be manipulated by melanoma!!!
The other points that you brought up from the discussions are things that have been bugging and intriguing me for some time. If we could find the answers to why some folks' melanoma is rather "indolent" (Like mine was from 2003 – 2010…where I managed just fine with no treatment other than surgery.) while at other times in the same patient, or in patients newly diagnosed….it spreads incredibly rapidly almost no matter what treatment is given! Why? Why? Why? Along the same line….Why is it some foks can go YEARS, not the norm for sure, but years with an incredible response to BRAF inhibitors, and then out of nowhere, develop a new lesion? As the experts were alluding to…I suspect that mutations play a huge role in all these scernarios. If we could get a real handle on that….and I think everyday does bring the science closer….melanoma would be a much less formidable enemy.
Lots to think about. Glad so many smart folks are working on it and glad folks like you will spread the word. Thanks, Brian. Celeste
-
- October 30, 2014 at 3:31 pm
Thanks Brian for collecting all that information and offer to everybody.
Jualonso
-
- October 30, 2014 at 3:40 pm
Great update Brian! I appreciate the time you took to help us all out.
I did have treatment yesterday and I asked my doctor if it was just a couple of us at Dana Farber, on this arm of the MK-3475 trial, that have been changed to "no end date" for the trial. They said that we were all changed to no end date. And I asked if I was one of their best responders….and they said that the vast majority of those in my arm of the trial are great responders. And my arm of the trial is treatment with MK-3475 without any prior drug treatment.
Thanks again and all my best, Laurie
-
- October 30, 2014 at 3:40 pm
Great update Brian! I appreciate the time you took to help us all out.
I did have treatment yesterday and I asked my doctor if it was just a couple of us at Dana Farber, on this arm of the MK-3475 trial, that have been changed to "no end date" for the trial. They said that we were all changed to no end date. And I asked if I was one of their best responders….and they said that the vast majority of those in my arm of the trial are great responders. And my arm of the trial is treatment with MK-3475 without any prior drug treatment.
Thanks again and all my best, Laurie
-
- October 30, 2014 at 3:40 pm
Great update Brian! I appreciate the time you took to help us all out.
I did have treatment yesterday and I asked my doctor if it was just a couple of us at Dana Farber, on this arm of the MK-3475 trial, that have been changed to "no end date" for the trial. They said that we were all changed to no end date. And I asked if I was one of their best responders….and they said that the vast majority of those in my arm of the trial are great responders. And my arm of the trial is treatment with MK-3475 without any prior drug treatment.
Thanks again and all my best, Laurie
-
- November 2, 2014 at 2:09 am
Brian – my husband & I attended and as you stated above, it was a great experience. Amazing speakers and very worthwhile event. I left with a feeling of hope and optimism for those fighting melanoma.
Julie.
-
- November 2, 2014 at 2:09 am
Brian – my husband & I attended and as you stated above, it was a great experience. Amazing speakers and very worthwhile event. I left with a feeling of hope and optimism for those fighting melanoma.
Julie.
-
- November 2, 2014 at 2:09 am
Brian – my husband & I attended and as you stated above, it was a great experience. Amazing speakers and very worthwhile event. I left with a feeling of hope and optimism for those fighting melanoma.
Julie.
-
- November 2, 2014 at 3:00 am
I think you were sitting behind us :). We were on the right side near the windows in the 3rd row. How did you get a black eye? I too wish we could have introduced ourselves. Amazed to see people fly in from all over the US for this event.
-
- November 2, 2014 at 1:22 pm
Hey, were you the one that knocked over my dad's glass (fortunately empty glass)?
The black eye was from a surfing wipeout the weekend prior. Board came up and smacked me in the face. Glad it happened a week prior to the conference. I looked like Rocky Balboa after a fight for a couple days right after it happened.
-
- November 2, 2014 at 10:11 pm
Too funny. After thinking about it last night, I almost said that I think I may have knocked your dad's glass over. Yep – that was me :). At least you hurt yourself doing something fun. Had to hurt!
-
- November 2, 2014 at 10:11 pm
Too funny. After thinking about it last night, I almost said that I think I may have knocked your dad's glass over. Yep – that was me :). At least you hurt yourself doing something fun. Had to hurt!
-
- November 2, 2014 at 10:11 pm
Too funny. After thinking about it last night, I almost said that I think I may have knocked your dad's glass over. Yep – that was me :). At least you hurt yourself doing something fun. Had to hurt!
-
- November 2, 2014 at 1:22 pm
Hey, were you the one that knocked over my dad's glass (fortunately empty glass)?
The black eye was from a surfing wipeout the weekend prior. Board came up and smacked me in the face. Glad it happened a week prior to the conference. I looked like Rocky Balboa after a fight for a couple days right after it happened.
-
- November 2, 2014 at 1:22 pm
Hey, were you the one that knocked over my dad's glass (fortunately empty glass)?
The black eye was from a surfing wipeout the weekend prior. Board came up and smacked me in the face. Glad it happened a week prior to the conference. I looked like Rocky Balboa after a fight for a couple days right after it happened.
-
- November 2, 2014 at 3:00 am
I think you were sitting behind us :). We were on the right side near the windows in the 3rd row. How did you get a black eye? I too wish we could have introduced ourselves. Amazed to see people fly in from all over the US for this event.
-
- November 2, 2014 at 3:00 am
I think you were sitting behind us :). We were on the right side near the windows in the 3rd row. How did you get a black eye? I too wish we could have introduced ourselves. Amazed to see people fly in from all over the US for this event.
-
- You must be logged in to reply to this topic.