› Forums › Mucosal Melanoma Community › Need infos on PD1
- This topic has 15 replies, 4 voices, and was last updated 10 years, 2 months ago by
Annalive.
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- September 20, 2014 at 5:52 pm
HI All,
I have Mucosal Melanoma in LaryngoPharynx + stable tiny nodules in Lungs area and Summary of my treatment are as below:
– Undergone removal of larynx surgery
-3 cycles of DTIC+Cisplatin+vinblastine – Not a good response
-2 Doses of Yervoy and failed to respond
-Radiation to reduce the pain
-8 cycles of IL-2 and it gave some positive response but it did not last for long. After stopping the medicine for 1 month, the disease reappeared again now.
Now looking at PD-1 as the option to go, as my Dr suggests this new medicine. We have few questions about PD-1
– What is the normal dose to be given. Is it 2 mg/Kg?
– Any idea about the price. As i live in India, i may need to import it
– What is the normal treatment period. For how many months we need to use that.
– Is it effective for Mucosal melanoma
– I am BRAF negative, Will that be a concern to take PD-1
Please help to provide the answers. It should be of great help.
Thanks,
Murugesan
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- September 20, 2014 at 8:31 pm
The pd1 I believe you are referring to is recently known as keytruda in the USA since the FDA approval. Formerly it was pembroluminab. This is Merck's PD1. Yes it is 2mg per kg of body weight per dose. I believe the price was set at $12,500 per dose. It is administered every 3 weeks. Before the 5th dose you would want to scan to see hopefully some awesome results. There is no concern being BRAF negative. If you get awesome results then stay on it of course as long as it keeps working or up to 2 years. I'm not aware they have compiled data with it on mucosal compared to the other melanomas.
There is also Nivolumab PD1 which is by Bristol-Myers. The same company that made Yervoy. It is available in Japan and approved by that government. I'm not aware of much more about it.
Also the people on the international forum might be able to help better with how to get it in India. They are at this website: http://forum.melanomainternational.org/mif/viewforum.php?f=54&sid=0a3f138f75fe749471552efdc3902d81
Hope that helps.
Artie
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- September 20, 2014 at 8:31 pm
The pd1 I believe you are referring to is recently known as keytruda in the USA since the FDA approval. Formerly it was pembroluminab. This is Merck's PD1. Yes it is 2mg per kg of body weight per dose. I believe the price was set at $12,500 per dose. It is administered every 3 weeks. Before the 5th dose you would want to scan to see hopefully some awesome results. There is no concern being BRAF negative. If you get awesome results then stay on it of course as long as it keeps working or up to 2 years. I'm not aware they have compiled data with it on mucosal compared to the other melanomas.
There is also Nivolumab PD1 which is by Bristol-Myers. The same company that made Yervoy. It is available in Japan and approved by that government. I'm not aware of much more about it.
Also the people on the international forum might be able to help better with how to get it in India. They are at this website: http://forum.melanomainternational.org/mif/viewforum.php?f=54&sid=0a3f138f75fe749471552efdc3902d81
Hope that helps.
Artie
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- September 20, 2014 at 8:31 pm
The pd1 I believe you are referring to is recently known as keytruda in the USA since the FDA approval. Formerly it was pembroluminab. This is Merck's PD1. Yes it is 2mg per kg of body weight per dose. I believe the price was set at $12,500 per dose. It is administered every 3 weeks. Before the 5th dose you would want to scan to see hopefully some awesome results. There is no concern being BRAF negative. If you get awesome results then stay on it of course as long as it keeps working or up to 2 years. I'm not aware they have compiled data with it on mucosal compared to the other melanomas.
There is also Nivolumab PD1 which is by Bristol-Myers. The same company that made Yervoy. It is available in Japan and approved by that government. I'm not aware of much more about it.
Also the people on the international forum might be able to help better with how to get it in India. They are at this website: http://forum.melanomainternational.org/mif/viewforum.php?f=54&sid=0a3f138f75fe749471552efdc3902d81
Hope that helps.
Artie
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- September 20, 2014 at 11:26 pm
Murugesan,
I also have mucosal melanoma and will be glad to talk with you.
AS Artie mentioned, there are no statistics regarding anti-PO-1 immunotherapies and mucosal melanoma. BRAF mutations are a minority in the mucosal melanomas. We are more likely to have either C-kit or NRAS.
PD-1 as a ageneral purpose immunotherapy may well have a positive effect agaiinst any of the mucosal melanoma DNA mutatiopns. It should show if it is working fairly fast and take the extreme length of time that Yervoy (Ipi) can take of up to one year to show if it is working.
I have the c-kit oncoprotein over-expression. The over-expression test can be run in two days at any decent local laboratory. If you are positive for the c-kit over expression, then you should also obtain the test for the c-kit DNA mutations. They were unable to determine my DNA mutation since my melanoma's are so black. My Oncologist went ahead and prescribed Gleevec (Glivec) (Imatinib Mesylate) for my extremely aggressive melanoma. My melanoma wa stabilized within 30 days! 5 1/2 years later it is still stable. Imatinib mesylate is a cytostatic which may not iduce apoptoses of the cancer cells but is quite likely to stop the C-kit mutaion sell from multiplying. See http://www.medindia.net/doctors/drug_information/imatinib.htm
The price in the USA for my 800 mg/day is $13,500 a month. i understand that since India has generics for it, that the price over there is under $600 a year! It is likely that the Imatinb mesylate will turn c-kit melanoma intop a chronic disease that is controlled. I would suggest to get the c-kit over-expression test iommediately..
f you go the PD-1 rout, I would appreciate it if you keep me informed of what is goingon with the treatment.
Sincerely
JerryfromFAuq
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- September 22, 2014 at 8:16 am
HI JERRY, wow! Thanks for the informative post. I am curious about the oncogene protein test. I have a BRAF-pos St 3? Met/Mel… Is there a broad range panel test for onco genes? How does one know what to test for? I have Onco and Naturopathic Onco. I have used hyperthermia, nutritional protocols, surgery and most recently Tomotherapy. I have never used the "designer drugs," (I say that because of their price,) they have for us. Wishing you the BEST…. we are each a clinical trial of one. I had Mel 22 years ago. It went dormant for 20 years then re-emerged. Go figure? Aloha, Ann
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- September 22, 2014 at 8:16 am
HI JERRY, wow! Thanks for the informative post. I am curious about the oncogene protein test. I have a BRAF-pos St 3? Met/Mel… Is there a broad range panel test for onco genes? How does one know what to test for? I have Onco and Naturopathic Onco. I have used hyperthermia, nutritional protocols, surgery and most recently Tomotherapy. I have never used the "designer drugs," (I say that because of their price,) they have for us. Wishing you the BEST…. we are each a clinical trial of one. I had Mel 22 years ago. It went dormant for 20 years then re-emerged. Go figure? Aloha, Ann
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- September 22, 2014 at 8:16 am
HI JERRY, wow! Thanks for the informative post. I am curious about the oncogene protein test. I have a BRAF-pos St 3? Met/Mel… Is there a broad range panel test for onco genes? How does one know what to test for? I have Onco and Naturopathic Onco. I have used hyperthermia, nutritional protocols, surgery and most recently Tomotherapy. I have never used the "designer drugs," (I say that because of their price,) they have for us. Wishing you the BEST…. we are each a clinical trial of one. I had Mel 22 years ago. It went dormant for 20 years then re-emerged. Go figure? Aloha, Ann
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- September 20, 2014 at 11:26 pm
Murugesan,
I also have mucosal melanoma and will be glad to talk with you.
AS Artie mentioned, there are no statistics regarding anti-PO-1 immunotherapies and mucosal melanoma. BRAF mutations are a minority in the mucosal melanomas. We are more likely to have either C-kit or NRAS.
PD-1 as a ageneral purpose immunotherapy may well have a positive effect agaiinst any of the mucosal melanoma DNA mutatiopns. It should show if it is working fairly fast and take the extreme length of time that Yervoy (Ipi) can take of up to one year to show if it is working.
I have the c-kit oncoprotein over-expression. The over-expression test can be run in two days at any decent local laboratory. If you are positive for the c-kit over expression, then you should also obtain the test for the c-kit DNA mutations. They were unable to determine my DNA mutation since my melanoma's are so black. My Oncologist went ahead and prescribed Gleevec (Glivec) (Imatinib Mesylate) for my extremely aggressive melanoma. My melanoma wa stabilized within 30 days! 5 1/2 years later it is still stable. Imatinib mesylate is a cytostatic which may not iduce apoptoses of the cancer cells but is quite likely to stop the C-kit mutaion sell from multiplying. See http://www.medindia.net/doctors/drug_information/imatinib.htm
The price in the USA for my 800 mg/day is $13,500 a month. i understand that since India has generics for it, that the price over there is under $600 a year! It is likely that the Imatinb mesylate will turn c-kit melanoma intop a chronic disease that is controlled. I would suggest to get the c-kit over-expression test iommediately..
f you go the PD-1 rout, I would appreciate it if you keep me informed of what is goingon with the treatment.
Sincerely
JerryfromFAuq
-
- September 20, 2014 at 11:26 pm
Murugesan,
I also have mucosal melanoma and will be glad to talk with you.
AS Artie mentioned, there are no statistics regarding anti-PO-1 immunotherapies and mucosal melanoma. BRAF mutations are a minority in the mucosal melanomas. We are more likely to have either C-kit or NRAS.
PD-1 as a ageneral purpose immunotherapy may well have a positive effect agaiinst any of the mucosal melanoma DNA mutatiopns. It should show if it is working fairly fast and take the extreme length of time that Yervoy (Ipi) can take of up to one year to show if it is working.
I have the c-kit oncoprotein over-expression. The over-expression test can be run in two days at any decent local laboratory. If you are positive for the c-kit over expression, then you should also obtain the test for the c-kit DNA mutations. They were unable to determine my DNA mutation since my melanoma's are so black. My Oncologist went ahead and prescribed Gleevec (Glivec) (Imatinib Mesylate) for my extremely aggressive melanoma. My melanoma wa stabilized within 30 days! 5 1/2 years later it is still stable. Imatinib mesylate is a cytostatic which may not iduce apoptoses of the cancer cells but is quite likely to stop the C-kit mutaion sell from multiplying. See http://www.medindia.net/doctors/drug_information/imatinib.htm
The price in the USA for my 800 mg/day is $13,500 a month. i understand that since India has generics for it, that the price over there is under $600 a year! It is likely that the Imatinb mesylate will turn c-kit melanoma intop a chronic disease that is controlled. I would suggest to get the c-kit over-expression test iommediately..
f you go the PD-1 rout, I would appreciate it if you keep me informed of what is goingon with the treatment.
Sincerely
JerryfromFAuq
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Tagged: mucosal melanoma
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