› Forums › General Melanoma Community › Immunotherapy / silver bullet / questions
- This topic has 27 replies, 4 voices, and was last updated 10 years ago by
Gene_S.
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- May 4, 2014 at 10:02 am
Hi all,
thanks to Brian for posting this link. Watched the discussion yesterday night together with my wife and we both found it very informative.
There are some questions, however, that I would hope the community could help me get answers to
– in the clip they mention dendritic cell therapy for glioblastoma: i have spoken to one expert here in Austria who suggested that method: As far as I understand the draw some blood, isolate the dendritic cell which are kind of baby immune cells, prime them with your own or generic tumor mateial to give them a picture of their future enemy. They create a vaccine that is then reinjected under you skin over a certain period once a week or so. In my country this is known as experimental method with no evidence, thus not covered by public insurance. The cost as far as I know is about 20 000$.
Q: what is the situation in the US for melanoma? Does any center offer this treatment method? Would this be covered? Does anybody know any evidence on that?
– i heard that TIL has been done successfully by dr. rosenberg at the NIH with rates of 40% full remission in a very small sample of patients. The risks are high as part of the treatment is a chemo that shuts down your immune system.
Q What is the status there? Has this become more widely used? Is this pursued by some research group and improved? If the rate of 40% is correct, why don't we hear more about that?
– dr. Wolchok mentions that the combination of Nivo and Ipi has up to 65% of people treated respond. Where does this number come from? in the same context I had read that the reponse rate to the combination is not higher than the 41% reponse rate to Anti PD1 without Ipi.
– this brings me to the last question: is the definition of full vs. Partial vs. Non responders standardized over all trials but defined in each trial? I think either dr. Wolchok or de. Hodi in a different presentation i saw on youtube said that 20% of pateint who received Ipi had a survival of 3 years? Is this then the same for the 41% or a bit more in PD1?
Thanks in asvance for all the controbutions!
Chris
- Replies
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- May 4, 2014 at 4:17 pm
Hi T
i can give you feedback on one of these. I participated in a dendritic cell clinical trial. It is considered experimental. The trial cost was paid for by Memorial Sloan Kettering. If you're interested, the trial number is 10-229. Last time I checked they were still recruiting patients. In my case, I self injected Neupogen to stimulate cell production which was harvested through apheresis. The cells were modified through MRNA (Description is on the test protocol if you google) and a vaccine was developed. I received 12 injections every three weeks over a 15 week period. Very easy other than some itchiness and welts at the injection site.
although the apheresis, harvesting and vaccine costs are covered, the travel is not.
hope that helps.
SA
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- May 4, 2014 at 4:17 pm
Hi T
i can give you feedback on one of these. I participated in a dendritic cell clinical trial. It is considered experimental. The trial cost was paid for by Memorial Sloan Kettering. If you're interested, the trial number is 10-229. Last time I checked they were still recruiting patients. In my case, I self injected Neupogen to stimulate cell production which was harvested through apheresis. The cells were modified through MRNA (Description is on the test protocol if you google) and a vaccine was developed. I received 12 injections every three weeks over a 15 week period. Very easy other than some itchiness and welts at the injection site.
although the apheresis, harvesting and vaccine costs are covered, the travel is not.
hope that helps.
SA
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- May 4, 2014 at 4:17 pm
Hi T
i can give you feedback on one of these. I participated in a dendritic cell clinical trial. It is considered experimental. The trial cost was paid for by Memorial Sloan Kettering. If you're interested, the trial number is 10-229. Last time I checked they were still recruiting patients. In my case, I self injected Neupogen to stimulate cell production which was harvested through apheresis. The cells were modified through MRNA (Description is on the test protocol if you google) and a vaccine was developed. I received 12 injections every three weeks over a 15 week period. Very easy other than some itchiness and welts at the injection site.
although the apheresis, harvesting and vaccine costs are covered, the travel is not.
hope that helps.
SA
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- May 4, 2014 at 7:19 pm
Chris,The following info may be of some interest, this is from the Moss Report that you asked about in a prior posting.Germany and its neighboring countries are world leaders in non-conventional cancer treatment. There are at least 60 CAM-oriented clinics, which treat cancer, in whole or in part, using the methods of complementary and alternative medicine (CAM). Many of them are located in attractive spa towns. (A spa town is indicated by the German word "Bad" (spa) in the name.)This report shall focus on clinics that are clearly "open for business" for English-speaking patients. This leaves ten in Germany, four in Switzerland, two in Austria, and one in Denmark (not technically a German-speaking country, but strongly influenced by German practices).Here are the two Austrian clinics if you are so inclined to contact them:Kostler, Wolfgang, MD1120 Wien,Hetzendorferstr. 100/6/3AustriaTel.: +43-1-808-3582Novipharm, GmbHA-9210 PortschachKlagenfurter Str 164AustriaTel: +4272-2751-0As far as TIL treatment, I can recall two instances of people that have gone through it, both were female, both have said it was a very rough treatment. One is doing fairly well and one is deceased.Best Wishes,Gene -
- May 4, 2014 at 8:14 pm
Hi Gene,
thanks very mich for your response. Pretty impressive what you can find in this report. I am still thinking about getting a copy of it as well as contacting Mr. Moss himself.
thanks as well for the information on TIL. I thought that ita was reough when I read the part about shutting down the immune system completely.
Take care,
c
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- May 4, 2014 at 8:14 pm
Hi Gene,
thanks very mich for your response. Pretty impressive what you can find in this report. I am still thinking about getting a copy of it as well as contacting Mr. Moss himself.
thanks as well for the information on TIL. I thought that ita was reough when I read the part about shutting down the immune system completely.
Take care,
c
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- May 4, 2014 at 8:14 pm
Hi Gene,
thanks very mich for your response. Pretty impressive what you can find in this report. I am still thinking about getting a copy of it as well as contacting Mr. Moss himself.
thanks as well for the information on TIL. I thought that ita was reough when I read the part about shutting down the immune system completely.
Take care,
c
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- May 4, 2014 at 7:19 pm
Chris,The following info may be of some interest, this is from the Moss Report that you asked about in a prior posting.Germany and its neighboring countries are world leaders in non-conventional cancer treatment. There are at least 60 CAM-oriented clinics, which treat cancer, in whole or in part, using the methods of complementary and alternative medicine (CAM). Many of them are located in attractive spa towns. (A spa town is indicated by the German word "Bad" (spa) in the name.)This report shall focus on clinics that are clearly "open for business" for English-speaking patients. This leaves ten in Germany, four in Switzerland, two in Austria, and one in Denmark (not technically a German-speaking country, but strongly influenced by German practices).Here are the two Austrian clinics if you are so inclined to contact them:Kostler, Wolfgang, MD1120 Wien,Hetzendorferstr. 100/6/3AustriaTel.: +43-1-808-3582Novipharm, GmbHA-9210 PortschachKlagenfurter Str 164AustriaTel: +4272-2751-0As far as TIL treatment, I can recall two instances of people that have gone through it, both were female, both have said it was a very rough treatment. One is doing fairly well and one is deceased.Best Wishes,Gene -
- May 4, 2014 at 7:19 pm
Chris,The following info may be of some interest, this is from the Moss Report that you asked about in a prior posting.Germany and its neighboring countries are world leaders in non-conventional cancer treatment. There are at least 60 CAM-oriented clinics, which treat cancer, in whole or in part, using the methods of complementary and alternative medicine (CAM). Many of them are located in attractive spa towns. (A spa town is indicated by the German word "Bad" (spa) in the name.)This report shall focus on clinics that are clearly "open for business" for English-speaking patients. This leaves ten in Germany, four in Switzerland, two in Austria, and one in Denmark (not technically a German-speaking country, but strongly influenced by German practices).Here are the two Austrian clinics if you are so inclined to contact them:Kostler, Wolfgang, MD1120 Wien,Hetzendorferstr. 100/6/3AustriaTel.: +43-1-808-3582Novipharm, GmbHA-9210 PortschachKlagenfurter Str 164AustriaTel: +4272-2751-0As far as TIL treatment, I can recall two instances of people that have gone through it, both were female, both have said it was a very rough treatment. One is doing fairly well and one is deceased.Best Wishes,Gene -
- May 4, 2014 at 11:14 pm
HI T,
i was 3a when I had the treatment. As far as positive effect, I really couldn't say. I know I have been NED since my Sentinal Node Biopsy which may have nothing to do with the vaccine. The results of the trial are not available as the study has not yet concluded. Dr. James Young of Memorial Sloan Kettering is the lead investigator.
regards
stan
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- May 4, 2014 at 11:14 pm
HI T,
i was 3a when I had the treatment. As far as positive effect, I really couldn't say. I know I have been NED since my Sentinal Node Biopsy which may have nothing to do with the vaccine. The results of the trial are not available as the study has not yet concluded. Dr. James Young of Memorial Sloan Kettering is the lead investigator.
regards
stan
-
- May 4, 2014 at 11:14 pm
HI T,
i was 3a when I had the treatment. As far as positive effect, I really couldn't say. I know I have been NED since my Sentinal Node Biopsy which may have nothing to do with the vaccine. The results of the trial are not available as the study has not yet concluded. Dr. James Young of Memorial Sloan Kettering is the lead investigator.
regards
stan
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- May 7, 2014 at 4:14 am
Chris,
I’ve been out of town for a couple days but wanted to try and respond to your question about Dr. Rosenberg’s TIL therapy as best I can. Dr. Rosenberg for reasons I don’t fully understand seems to be a polarizing figure in some medical circles. Like the man, his TIL treatment also seems to cause polarization. There are many threads on this site where you can see the polarization but the below thread is one of the better ones for all the differing opinions as well as good info presented:
One simple reason TIL hasn’t been more widely tried is it is very expensive treatment and may be very difficult to make money off of. Unfortunately, for better or worse, cancer research is motivated by the ability to make money and even if TIL because successful it may be hard to make money off of it. That is why the majority if not all of the TIL research has taken place at NCI where US taxpayers flip the bill for the research.
As far as Dr. Rosenberg’s published results. Some claim that NCI hand picks the patients so the results are therefore skewed. They also claim other facilities conducting the same trials are not getting as good of results so in their mind that also brings into questions Dr. Rosenberg’s practices. I personally don’t prescribe to these theories. Another issue people have with his posted results is that the results only include the patients in which they could successfully harvest TIL cells for. There is a percentage of patients which are unable to have their TIL cells harvested which is not factored in to the results. The one thing I remember from one of Dr. Rosenberg’s talks I thought was really impressive is the results he quotes are the overall results from all patients in the first trial but in actuality the rates were much better for the patients in the later stages of the trial as the pre cocktail treatment was tweaked.
Below is a link to the most recent talk by Dr. Rosenberg at AACR 2014. Very technical and hard to fully understand but I post it to show the complexity and even brilliance of Dr. Rosenberg’s work. The interesting thing about the talk is the idea of being able to develop personalized targeted TIL therapy for each patient.
http://webcast.aacr.org/console/player/23029?mediaType=audio&
In the US I really only know of three sites that are doing TIL procedures but I think there are others that are getting ready to start or may have already started. Those sites are at MD Anderson and Moffitt. Both site leads studied/worked under Dr. Rosenberg. I know Moffitt just got a grant for their program and I think they are looking at combining their TIL treatment with some other immunotherapy treatments.
Outside of the US the only other place I know of is Dr. Shimon Slavin in Israel. A fellow patient and friend of mine emailed me the following about Dr. Shimon:
"Here's a link for Dr. Shimon Slavin in Israel:
http://www.ctcicenter.com/our-novel-technologies.htm
He's a real pioneer of cell therapy – his work really follows a parallel path with Rosenberg's from the 80s to today. The main difference in the approach (and I don't entirely understand this really) is whether the procedure is myeloablative vs. non-myeloablative : with Slavin's non-myeloablative approach it seems they don't have to take the immune system down with chemo because they are using a donor's expanded cells rather than your own expanded cells. Sometimes the donor is a close match like a sibling, but sometimes they actually want something more like a partial match. It can be a really beautiful thing between people, like a kidney transplant. More recently, Dr. Rosenberg has travelled over there and worked very closely with them to completely train Slavin's team in the NIH method as well."
Sorry a little long but I really think TIL is a great procedure. I would not be surprised one day if Dr. Rosenberg is to cancer as Jonas Salk was to polio. I think his work is amazing. I hope I don’t need it down the road but if I ever need it and can qualify I would jump at the opportunity to have TIL treatment.
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- May 7, 2014 at 4:14 am
Chris,
I’ve been out of town for a couple days but wanted to try and respond to your question about Dr. Rosenberg’s TIL therapy as best I can. Dr. Rosenberg for reasons I don’t fully understand seems to be a polarizing figure in some medical circles. Like the man, his TIL treatment also seems to cause polarization. There are many threads on this site where you can see the polarization but the below thread is one of the better ones for all the differing opinions as well as good info presented:
One simple reason TIL hasn’t been more widely tried is it is very expensive treatment and may be very difficult to make money off of. Unfortunately, for better or worse, cancer research is motivated by the ability to make money and even if TIL because successful it may be hard to make money off of it. That is why the majority if not all of the TIL research has taken place at NCI where US taxpayers flip the bill for the research.
As far as Dr. Rosenberg’s published results. Some claim that NCI hand picks the patients so the results are therefore skewed. They also claim other facilities conducting the same trials are not getting as good of results so in their mind that also brings into questions Dr. Rosenberg’s practices. I personally don’t prescribe to these theories. Another issue people have with his posted results is that the results only include the patients in which they could successfully harvest TIL cells for. There is a percentage of patients which are unable to have their TIL cells harvested which is not factored in to the results. The one thing I remember from one of Dr. Rosenberg’s talks I thought was really impressive is the results he quotes are the overall results from all patients in the first trial but in actuality the rates were much better for the patients in the later stages of the trial as the pre cocktail treatment was tweaked.
Below is a link to the most recent talk by Dr. Rosenberg at AACR 2014. Very technical and hard to fully understand but I post it to show the complexity and even brilliance of Dr. Rosenberg’s work. The interesting thing about the talk is the idea of being able to develop personalized targeted TIL therapy for each patient.
http://webcast.aacr.org/console/player/23029?mediaType=audio&
In the US I really only know of three sites that are doing TIL procedures but I think there are others that are getting ready to start or may have already started. Those sites are at MD Anderson and Moffitt. Both site leads studied/worked under Dr. Rosenberg. I know Moffitt just got a grant for their program and I think they are looking at combining their TIL treatment with some other immunotherapy treatments.
Outside of the US the only other place I know of is Dr. Shimon Slavin in Israel. A fellow patient and friend of mine emailed me the following about Dr. Shimon:
"Here's a link for Dr. Shimon Slavin in Israel:
http://www.ctcicenter.com/our-novel-technologies.htm
He's a real pioneer of cell therapy – his work really follows a parallel path with Rosenberg's from the 80s to today. The main difference in the approach (and I don't entirely understand this really) is whether the procedure is myeloablative vs. non-myeloablative : with Slavin's non-myeloablative approach it seems they don't have to take the immune system down with chemo because they are using a donor's expanded cells rather than your own expanded cells. Sometimes the donor is a close match like a sibling, but sometimes they actually want something more like a partial match. It can be a really beautiful thing between people, like a kidney transplant. More recently, Dr. Rosenberg has travelled over there and worked very closely with them to completely train Slavin's team in the NIH method as well."
Sorry a little long but I really think TIL is a great procedure. I would not be surprised one day if Dr. Rosenberg is to cancer as Jonas Salk was to polio. I think his work is amazing. I hope I don’t need it down the road but if I ever need it and can qualify I would jump at the opportunity to have TIL treatment.
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- May 7, 2014 at 7:57 am
Thanks, Brian, for that comprehensive answer. I also find the idea (from what I understand) quite intereseting. I hope that there will come a time when there is enough evidence for the use of this treatement that we can easily benefit from it if needed.
all the best,
Chris
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- May 7, 2014 at 7:57 am
Thanks, Brian, for that comprehensive answer. I also find the idea (from what I understand) quite intereseting. I hope that there will come a time when there is enough evidence for the use of this treatement that we can easily benefit from it if needed.
all the best,
Chris
-
- May 7, 2014 at 7:57 am
Thanks, Brian, for that comprehensive answer. I also find the idea (from what I understand) quite intereseting. I hope that there will come a time when there is enough evidence for the use of this treatement that we can easily benefit from it if needed.
all the best,
Chris
-
- May 7, 2014 at 4:14 am
Chris,
I’ve been out of town for a couple days but wanted to try and respond to your question about Dr. Rosenberg’s TIL therapy as best I can. Dr. Rosenberg for reasons I don’t fully understand seems to be a polarizing figure in some medical circles. Like the man, his TIL treatment also seems to cause polarization. There are many threads on this site where you can see the polarization but the below thread is one of the better ones for all the differing opinions as well as good info presented:
One simple reason TIL hasn’t been more widely tried is it is very expensive treatment and may be very difficult to make money off of. Unfortunately, for better or worse, cancer research is motivated by the ability to make money and even if TIL because successful it may be hard to make money off of it. That is why the majority if not all of the TIL research has taken place at NCI where US taxpayers flip the bill for the research.
As far as Dr. Rosenberg’s published results. Some claim that NCI hand picks the patients so the results are therefore skewed. They also claim other facilities conducting the same trials are not getting as good of results so in their mind that also brings into questions Dr. Rosenberg’s practices. I personally don’t prescribe to these theories. Another issue people have with his posted results is that the results only include the patients in which they could successfully harvest TIL cells for. There is a percentage of patients which are unable to have their TIL cells harvested which is not factored in to the results. The one thing I remember from one of Dr. Rosenberg’s talks I thought was really impressive is the results he quotes are the overall results from all patients in the first trial but in actuality the rates were much better for the patients in the later stages of the trial as the pre cocktail treatment was tweaked.
Below is a link to the most recent talk by Dr. Rosenberg at AACR 2014. Very technical and hard to fully understand but I post it to show the complexity and even brilliance of Dr. Rosenberg’s work. The interesting thing about the talk is the idea of being able to develop personalized targeted TIL therapy for each patient.
http://webcast.aacr.org/console/player/23029?mediaType=audio&
In the US I really only know of three sites that are doing TIL procedures but I think there are others that are getting ready to start or may have already started. Those sites are at MD Anderson and Moffitt. Both site leads studied/worked under Dr. Rosenberg. I know Moffitt just got a grant for their program and I think they are looking at combining their TIL treatment with some other immunotherapy treatments.
Outside of the US the only other place I know of is Dr. Shimon Slavin in Israel. A fellow patient and friend of mine emailed me the following about Dr. Shimon:
"Here's a link for Dr. Shimon Slavin in Israel:
http://www.ctcicenter.com/our-novel-technologies.htm
He's a real pioneer of cell therapy – his work really follows a parallel path with Rosenberg's from the 80s to today. The main difference in the approach (and I don't entirely understand this really) is whether the procedure is myeloablative vs. non-myeloablative : with Slavin's non-myeloablative approach it seems they don't have to take the immune system down with chemo because they are using a donor's expanded cells rather than your own expanded cells. Sometimes the donor is a close match like a sibling, but sometimes they actually want something more like a partial match. It can be a really beautiful thing between people, like a kidney transplant. More recently, Dr. Rosenberg has travelled over there and worked very closely with them to completely train Slavin's team in the NIH method as well."
Sorry a little long but I really think TIL is a great procedure. I would not be surprised one day if Dr. Rosenberg is to cancer as Jonas Salk was to polio. I think his work is amazing. I hope I don’t need it down the road but if I ever need it and can qualify I would jump at the opportunity to have TIL treatment.
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- May 7, 2014 at 7:55 pm
May be of interest ? http://www.germancancerbreakthrough.com/
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- May 7, 2014 at 7:55 pm
May be of interest ? http://www.germancancerbreakthrough.com/
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- May 7, 2014 at 7:55 pm
May be of interest ? http://www.germancancerbreakthrough.com/
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