Anti pd 1

If you search this forum for the term "anti-PD1" you will find a lot of posts about it. Anti-PD1 is still in clinical trials in the US, are such clinical trials available in Australia? Is Yervoy (ipilumimab) available in Australia? There is a new webinar on the Melanoma International Foundation by Dr. Antoni Ribas about anti-PD1. You can view it here http://melanomainternational.org/events-webinar/#.UhSmxuDiowE

Good luck with your research!

If you search this forum for the term "anti-PD1" you will find a lot of posts about it. Anti-PD1 is still in clinical trials in the US, are such clinical trials available in Australia? Is Yervoy (ipilumimab) available in Australia? There is a new webinar on the Melanoma International Foundation by Dr. Antoni Ribas about anti-PD1. You can view it here http://melanomainternational.org/events-webinar/#.UhSmxuDiowE

Good luck with your research!

If you search this forum for the term "anti-PD1" you will find a lot of posts about it. Anti-PD1 is still in clinical trials in the US, are such clinical trials available in Australia? Is Yervoy (ipilumimab) available in Australia? There is a new webinar on the Melanoma International Foundation by Dr. Antoni Ribas about anti-PD1. You can view it here http://melanomainternational.org/events-webinar/#.UhSmxuDiowE

Good luck with your research!

Hi Lisa,

Sorry to hear about your husband. Have they done a fine needle aspiration on that lymph node to confirm their suspicions? Not all swollen nodes turn out to be melanoma, some are just reactive. But it's good that his oncologist is being aggressive and proactive since melanoma can figure out how to outsmart Zelboraf.

If you searched this site, you'll find that there are quite a number of positive stories about anti PD-1. Folks seem to do very well on it. Lynn Luckeroth has been on it for over 2 years, I believe, and is still NED. The side effects seem to be minimal. In my humble non-medical opinion, anti PD-1 sounds like a great option.

Hi Lisa,

Sorry to hear about your husband. Have they done a fine needle aspiration on that lymph node to confirm their suspicions? Not all swollen nodes turn out to be melanoma, some are just reactive. But it's good that his oncologist is being aggressive and proactive since melanoma can figure out how to outsmart Zelboraf.

If you searched this site, you'll find that there are quite a number of positive stories about anti PD-1. Folks seem to do very well on it. Lynn Luckeroth has been on it for over 2 years, I believe, and is still NED. The side effects seem to be minimal. In my humble non-medical opinion, anti PD-1 sounds like a great option.

Hi Lisa,

Sorry to hear about your husband. Have they done a fine needle aspiration on that lymph node to confirm their suspicions? Not all swollen nodes turn out to be melanoma, some are just reactive. But it's good that his oncologist is being aggressive and proactive since melanoma can figure out how to outsmart Zelboraf.

If you searched this site, you'll find that there are quite a number of positive stories about anti PD-1. Folks seem to do very well on it. Lynn Luckeroth has been on it for over 2 years, I believe, and is still NED. The side effects seem to be minimal. In my humble non-medical opinion, anti PD-1 sounds like a great option.

Hey Lisa,

Sorry you and your husband are having to look for more options.  I started the BMS anti-PD1 product (now named Nivolumab) in December of 2010, in an NED arm for Stage IV patients after SRS to a brain met and surgery to a lung met and a tonsilectomy that was also positive for melanoma.  I was given anti-Pd1 every 2 weeks for 6 months (along with peptide vaccines…which have been found to provide nothing) and then every 3 months for two more years.  I remain NED.  My story and experiences as well as data re other melanoma treatments can be found on my blog.  Just google:  "Chaotically Precise" and it will come up, if you are interested.  Wishing you both my best.  Celeste

Hey Lisa,

Sorry you and your husband are having to look for more options.  I started the BMS anti-PD1 product (now named Nivolumab) in December of 2010, in an NED arm for Stage IV patients after SRS to a brain met and surgery to a lung met and a tonsilectomy that was also positive for melanoma.  I was given anti-Pd1 every 2 weeks for 6 months (along with peptide vaccines…which have been found to provide nothing) and then every 3 months for two more years.  I remain NED.  My story and experiences as well as data re other melanoma treatments can be found on my blog.  Just google:  "Chaotically Precise" and it will come up, if you are interested.  Wishing you both my best.  Celeste

Hey Lisa,

Sorry you and your husband are having to look for more options.  I started the BMS anti-PD1 product (now named Nivolumab) in December of 2010, in an NED arm for Stage IV patients after SRS to a brain met and surgery to a lung met and a tonsilectomy that was also positive for melanoma.  I was given anti-Pd1 every 2 weeks for 6 months (along with peptide vaccines…which have been found to provide nothing) and then every 3 months for two more years.  I remain NED.  My story and experiences as well as data re other melanoma treatments can be found on my blog.  Just google:  "Chaotically Precise" and it will come up, if you are interested.  Wishing you both my best.  Celeste

My side effects have been manageable and probably less than what folks who do interferon have to deal with! I have had arthralgias off and on after infusions…they kind of come and go. I have also dealt with mucositis off and on that has caused lesions in my mouth….they have waxed and waned but seemed to become more persistent as I went through the trial. I also developed a lot of vitiligo….which is completely pain free of course….just an appearance thing. There have been pretty consistent rashes with itching….and a little tiredness. But, overall nothing compared to what many others have endured. I have missed only three days of work in the past 2 3/4 years and have been able to rebuild my stamina for running and other exercise after my infusions. I think a cross over clause is essential for trials comparing ipi or anti-PD1 to older chemo agents….but it seems that more and more trials are including them. I wish you the very best with the biopsy and decisions that follow. Keep us posted and let me know if there any other questions I might be able to answer. C

My side effects have been manageable and probably less than what folks who do interferon have to deal with! I have had arthralgias off and on after infusions…they kind of come and go. I have also dealt with mucositis off and on that has caused lesions in my mouth….they have waxed and waned but seemed to become more persistent as I went through the trial. I also developed a lot of vitiligo….which is completely pain free of course….just an appearance thing. There have been pretty consistent rashes with itching….and a little tiredness. But, overall nothing compared to what many others have endured. I have missed only three days of work in the past 2 3/4 years and have been able to rebuild my stamina for running and other exercise after my infusions. I think a cross over clause is essential for trials comparing ipi or anti-PD1 to older chemo agents….but it seems that more and more trials are including them. I wish you the very best with the biopsy and decisions that follow. Keep us posted and let me know if there any other questions I might be able to answer. C

My side effects have been manageable and probably less than what folks who do interferon have to deal with! I have had arthralgias off and on after infusions…they kind of come and go. I have also dealt with mucositis off and on that has caused lesions in my mouth….they have waxed and waned but seemed to become more persistent as I went through the trial. I also developed a lot of vitiligo….which is completely pain free of course….just an appearance thing. There have been pretty consistent rashes with itching….and a little tiredness. But, overall nothing compared to what many others have endured. I have missed only three days of work in the past 2 3/4 years and have been able to rebuild my stamina for running and other exercise after my infusions. I think a cross over clause is essential for trials comparing ipi or anti-PD1 to older chemo agents….but it seems that more and more trials are including them. I wish you the very best with the biopsy and decisions that follow. Keep us posted and let me know if there any other questions I might be able to answer. C

Sorry for the biopsy results!  But….I am certain you will come up with a workable plan!!!  Hang in there.  Keep us all posted and let me know if there is anything I can possibly answer.  Yours, celeste

Hi Lisa,

I have only had 2 doses so far, but having VERY minimal side effects. NOTHING like while on Zelboraf. Have had some days of fatigue, and some mild itching. One day with some flu-like symptoms. The Dr told me the side effects do not seem to be cumulative in nature, so they do not necessarily get worse as time goes on. Dr also said it tends to be well-tolerated. Of those who repsond, a large percentage have DURABLE response to it.

Tina

Hi Lisa,

I have only had 2 doses so far, but having VERY minimal side effects. NOTHING like while on Zelboraf. Have had some days of fatigue, and some mild itching. One day with some flu-like symptoms. The Dr told me the side effects do not seem to be cumulative in nature, so they do not necessarily get worse as time goes on. Dr also said it tends to be well-tolerated. Of those who repsond, a large percentage have DURABLE response to it.

Tina

Hi Lisa,

I have only had 2 doses so far, but having VERY minimal side effects. NOTHING like while on Zelboraf. Have had some days of fatigue, and some mild itching. One day with some flu-like symptoms. The Dr told me the side effects do not seem to be cumulative in nature, so they do not necessarily get worse as time goes on. Dr also said it tends to be well-tolerated. Of those who repsond, a large percentage have DURABLE response to it.

Tina

Lisa, I was on Z for just over 6 months. Initially, with tumors in pancreas,back muscle and many abdominal nodes, I had a complete response at the 8 week mark. It began to return, however, at abt the 6 month mark. I then took ipi and initially had some shrinkage, but 2nd set of scans showed growth once again. 

Tina

Sorry for the biopsy results!  But….I am certain you will come up with a workable plan!!!  Hang in there.  Keep us all posted and let me know if there is anything I can possibly answer.  Yours, celeste

Sorry for the biopsy results!  But….I am certain you will come up with a workable plan!!!  Hang in there.  Keep us all posted and let me know if there is anything I can possibly answer.  Yours, celeste

Lisa, I was on Z for just over 6 months. Initially, with tumors in pancreas,back muscle and many abdominal nodes, I had a complete response at the 8 week mark. It began to return, however, at abt the 6 month mark. I then took ipi and initially had some shrinkage, but 2nd set of scans showed growth once again. 

Tina

Lisa, I was on Z for just over 6 months. Initially, with tumors in pancreas,back muscle and many abdominal nodes, I had a complete response at the 8 week mark. It began to return, however, at abt the 6 month mark. I then took ipi and initially had some shrinkage, but 2nd set of scans showed growth once again. 

Tina