Best Clinical trials

In my opinion the ones down at Moffit in Tampa by Dr. Weber that involve combining a vaccine with pd1 and things. I believe they are only available to non treated patients. If I could start over that is what I would do. But that's just my opinion.

Artie

In my opinion the ones down at Moffit in Tampa by Dr. Weber that involve combining a vaccine with pd1 and things. I believe they are only available to non treated patients. If I could start over that is what I would do. But that's just my opinion.

Artie

In my opinion the ones down at Moffit in Tampa by Dr. Weber that involve combining a vaccine with pd1 and things. I believe they are only available to non treated patients. If I could start over that is what I would do. But that's just my opinion.

Artie

The best # so far reported at this years ASCO was the trial involving Ipi and Nivolumab together. The one year overal survival was in the 85% range and the 2 year survival was mid 79% range.  If you go back to post in June or early july there was some discussion of a trial that opened again in the states. You tube interview(25mins.) with Jedd Wolchok from Memorial Sloan Kettering. The video title is ASCO 2014: Melanoma     (subtitle is Imedex)Another big named is Mario Sznol of Yale school of medicine. He has video from this years ASCO reporting on the study of 53 patients of combined Ipi and Nivolumab trial. Antoni Ribas is another doctor to follow as he represents the  Merck Pd-1 study.  I would also suggest that you join medscape (free)  there is a video named ( Pretty darn impressive) it is all about recent ASCO reports. Dr Ribas is in the interview with Dr. Weber and talk about 2014 ASCO abstracts. I hope this will help you with you research. Ed

The best # so far reported at this years ASCO was the trial involving Ipi and Nivolumab together. The one year overal survival was in the 85% range and the 2 year survival was mid 79% range.  If you go back to post in June or early july there was some discussion of a trial that opened again in the states. You tube interview(25mins.) with Jedd Wolchok from Memorial Sloan Kettering. The video title is ASCO 2014: Melanoma     (subtitle is Imedex)Another big named is Mario Sznol of Yale school of medicine. He has video from this years ASCO reporting on the study of 53 patients of combined Ipi and Nivolumab trial. Antoni Ribas is another doctor to follow as he represents the  Merck Pd-1 study.  I would also suggest that you join medscape (free)  there is a video named ( Pretty darn impressive) it is all about recent ASCO reports. Dr Ribas is in the interview with Dr. Weber and talk about 2014 ASCO abstracts. I hope this will help you with you research. Ed

The best # so far reported at this years ASCO was the trial involving Ipi and Nivolumab together. The one year overal survival was in the 85% range and the 2 year survival was mid 79% range.  If you go back to post in June or early july there was some discussion of a trial that opened again in the states. You tube interview(25mins.) with Jedd Wolchok from Memorial Sloan Kettering. The video title is ASCO 2014: Melanoma     (subtitle is Imedex)Another big named is Mario Sznol of Yale school of medicine. He has video from this years ASCO reporting on the study of 53 patients of combined Ipi and Nivolumab trial. Antoni Ribas is another doctor to follow as he represents the  Merck Pd-1 study.  I would also suggest that you join medscape (free)  there is a video named ( Pretty darn impressive) it is all about recent ASCO reports. Dr Ribas is in the interview with Dr. Weber and talk about 2014 ASCO abstracts. I hope this will help you with you research. Ed

I'm in a similar boat with you. My father had a large amelanotic nodular melanoma (20 mm depth) near his knee. Long story, but it took a long time to diagnose, as Dad is prone to cysts, thought that's what it was, so when his doctor's appointments kept getting pushed back — turns out his doctor was in treatment for prostate cancer at the time — he wasn't too worried. When he finally saw the GP and then the surgeon, both were sure it was basal cell, so they didn't hurry things. By the time he saw his doctor, then the surgeon and then got it removed and biopsied, about five months had passed since he had first noticed it and it had grown and grown. This still breaks my heart!

At any rate, he had the first tumor removed last December and all looked good since his PET/CT was clear, except for the surgery site, which was to be expected because of the inflammation. We had been referred to UCSF, and they scheduled him for a return in six months (which would have been July.) By early May, a new tumor popped up near the original one. That was removed at the end of May. By mid-July, three more tumors had developed near the original site and an in-transit tumor was found in his thigh as well. A PET/CT showed several spots in his lungs and one suspicious spot on his hip bone. Brain MRI was clear.

We were given a couple choices at UCSF: one was to do one round of Ipi and then start the then-EAP for Pembro/Keytruda; the second choice was a clinical trial that was starting which had three arms: one with MEDI4736 in combination with Dabrafenib and Trametinib (for the BRAF positive) or with Trametinib alone (one at the same time as the MEDI, one arm with the Trametinib following the MEDI treatment.) Dad turned out to be BRAF-wild which meant Tramentinib alone, and that meant an increased risk of side effects. Dr. Daud (his doctor at UCSF) thought that the Ipi/Pembro route was the better choice. I was also hesitant to put Dad through a Phase I trial at the age of almost-83. Hence, we decided to go the Ipi/Pembro route.

Three days before his first infusion of Ipi, Pembro was approved by the FDA, which meant that he needed two infusions of Ipi (rather than one) before beginning Pembro/Keytruda. To date, he has done the two Ipi infusions and will get the first dose of Keytruda in about a week. He's had no real side effects with Ipi — perhaps some mild fatigue the first couple days, so I'm very thankful for that and hope that no side effects surface down the road! We think that his largest tumor near the knee has shrunk some, and just in the past three days or so, his pain has lessened considerably. However, he has also developed a couple more 'lumps' in the same area in the past few weeks, which I guess is not surprising.

We were told that UCSF will be starting a new clinical trial very soon involving talimogene laherparebvec and MK-3475 (Keytruda) in which the talimogene is injected directly into the tumors along with infusions of Keytruda. From what we were told, this trial is open to the untreated as well as those who have progressed on Keytruda, which obviously leaves it open to those who have used Ipi (since for most people that comes before Keytruda). I'm no expert on this one since the doctor just spoke with us about it at our last visit, so anyone who knows more can correct me!

In sum, I understand your confusion and your desire to find the best treatment for your dad. I had a hard enough time getting my dad to agree to drive to San Francisco (it's a couple hours away), so that definitely limited us in our treatment options. But anything was better than staying with his local doctors who wanted to amputate his leg!!! And UCSF is, by all accounts, top-notch in melanoma treatment, so I'm so incredibly grateful that it was an option for us. As I said, I took into account my dad's age — don't know how old your father is — when deciding what route to take because I didn't want to get him into a situation in which he did a brand new treatment and was the guinea pig who make scientists realize that it was a bad treatment. With his age — and with Keytruda such a good bet — it was kind of a no-brainer for me. 

Sorry for writing so much, but I think that you shouldn't worry too much about what clinical trials Ipi would eliminate him from, but rather consider the treatments which have already shown success so as to get him started right away. In my own father's case, waiting too long was not a good option since his melanoma seems to be moving pretty quickly.

I'm in a similar boat with you. My father had a large amelanotic nodular melanoma (20 mm depth) near his knee. Long story, but it took a long time to diagnose, as Dad is prone to cysts, thought that's what it was, so when his doctor's appointments kept getting pushed back — turns out his doctor was in treatment for prostate cancer at the time — he wasn't too worried. When he finally saw the GP and then the surgeon, both were sure it was basal cell, so they didn't hurry things. By the time he saw his doctor, then the surgeon and then got it removed and biopsied, about five months had passed since he had first noticed it and it had grown and grown. This still breaks my heart!

At any rate, he had the first tumor removed last December and all looked good since his PET/CT was clear, except for the surgery site, which was to be expected because of the inflammation. We had been referred to UCSF, and they scheduled him for a return in six months (which would have been July.) By early May, a new tumor popped up near the original one. That was removed at the end of May. By mid-July, three more tumors had developed near the original site and an in-transit tumor was found in his thigh as well. A PET/CT showed several spots in his lungs and one suspicious spot on his hip bone. Brain MRI was clear.

We were given a couple choices at UCSF: one was to do one round of Ipi and then start the then-EAP for Pembro/Keytruda; the second choice was a clinical trial that was starting which had three arms: one with MEDI4736 in combination with Dabrafenib and Trametinib (for the BRAF positive) or with Trametinib alone (one at the same time as the MEDI, one arm with the Trametinib following the MEDI treatment.) Dad turned out to be BRAF-wild which meant Tramentinib alone, and that meant an increased risk of side effects. Dr. Daud (his doctor at UCSF) thought that the Ipi/Pembro route was the better choice. I was also hesitant to put Dad through a Phase I trial at the age of almost-83. Hence, we decided to go the Ipi/Pembro route.

Three days before his first infusion of Ipi, Pembro was approved by the FDA, which meant that he needed two infusions of Ipi (rather than one) before beginning Pembro/Keytruda. To date, he has done the two Ipi infusions and will get the first dose of Keytruda in about a week. He's had no real side effects with Ipi — perhaps some mild fatigue the first couple days, so I'm very thankful for that and hope that no side effects surface down the road! We think that his largest tumor near the knee has shrunk some, and just in the past three days or so, his pain has lessened considerably. However, he has also developed a couple more 'lumps' in the same area in the past few weeks, which I guess is not surprising.

We were told that UCSF will be starting a new clinical trial very soon involving talimogene laherparebvec and MK-3475 (Keytruda) in which the talimogene is injected directly into the tumors along with infusions of Keytruda. From what we were told, this trial is open to the untreated as well as those who have progressed on Keytruda, which obviously leaves it open to those who have used Ipi (since for most people that comes before Keytruda). I'm no expert on this one since the doctor just spoke with us about it at our last visit, so anyone who knows more can correct me!

In sum, I understand your confusion and your desire to find the best treatment for your dad. I had a hard enough time getting my dad to agree to drive to San Francisco (it's a couple hours away), so that definitely limited us in our treatment options. But anything was better than staying with his local doctors who wanted to amputate his leg!!! And UCSF is, by all accounts, top-notch in melanoma treatment, so I'm so incredibly grateful that it was an option for us. As I said, I took into account my dad's age — don't know how old your father is — when deciding what route to take because I didn't want to get him into a situation in which he did a brand new treatment and was the guinea pig who make scientists realize that it was a bad treatment. With his age — and with Keytruda such a good bet — it was kind of a no-brainer for me. 

Sorry for writing so much, but I think that you shouldn't worry too much about what clinical trials Ipi would eliminate him from, but rather consider the treatments which have already shown success so as to get him started right away. In my own father's case, waiting too long was not a good option since his melanoma seems to be moving pretty quickly.

I'm in a similar boat with you. My father had a large amelanotic nodular melanoma (20 mm depth) near his knee. Long story, but it took a long time to diagnose, as Dad is prone to cysts, thought that's what it was, so when his doctor's appointments kept getting pushed back — turns out his doctor was in treatment for prostate cancer at the time — he wasn't too worried. When he finally saw the GP and then the surgeon, both were sure it was basal cell, so they didn't hurry things. By the time he saw his doctor, then the surgeon and then got it removed and biopsied, about five months had passed since he had first noticed it and it had grown and grown. This still breaks my heart!

At any rate, he had the first tumor removed last December and all looked good since his PET/CT was clear, except for the surgery site, which was to be expected because of the inflammation. We had been referred to UCSF, and they scheduled him for a return in six months (which would have been July.) By early May, a new tumor popped up near the original one. That was removed at the end of May. By mid-July, three more tumors had developed near the original site and an in-transit tumor was found in his thigh as well. A PET/CT showed several spots in his lungs and one suspicious spot on his hip bone. Brain MRI was clear.

We were given a couple choices at UCSF: one was to do one round of Ipi and then start the then-EAP for Pembro/Keytruda; the second choice was a clinical trial that was starting which had three arms: one with MEDI4736 in combination with Dabrafenib and Trametinib (for the BRAF positive) or with Trametinib alone (one at the same time as the MEDI, one arm with the Trametinib following the MEDI treatment.) Dad turned out to be BRAF-wild which meant Tramentinib alone, and that meant an increased risk of side effects. Dr. Daud (his doctor at UCSF) thought that the Ipi/Pembro route was the better choice. I was also hesitant to put Dad through a Phase I trial at the age of almost-83. Hence, we decided to go the Ipi/Pembro route.

Three days before his first infusion of Ipi, Pembro was approved by the FDA, which meant that he needed two infusions of Ipi (rather than one) before beginning Pembro/Keytruda. To date, he has done the two Ipi infusions and will get the first dose of Keytruda in about a week. He's had no real side effects with Ipi — perhaps some mild fatigue the first couple days, so I'm very thankful for that and hope that no side effects surface down the road! We think that his largest tumor near the knee has shrunk some, and just in the past three days or so, his pain has lessened considerably. However, he has also developed a couple more 'lumps' in the same area in the past few weeks, which I guess is not surprising.

We were told that UCSF will be starting a new clinical trial very soon involving talimogene laherparebvec and MK-3475 (Keytruda) in which the talimogene is injected directly into the tumors along with infusions of Keytruda. From what we were told, this trial is open to the untreated as well as those who have progressed on Keytruda, which obviously leaves it open to those who have used Ipi (since for most people that comes before Keytruda). I'm no expert on this one since the doctor just spoke with us about it at our last visit, so anyone who knows more can correct me!

In sum, I understand your confusion and your desire to find the best treatment for your dad. I had a hard enough time getting my dad to agree to drive to San Francisco (it's a couple hours away), so that definitely limited us in our treatment options. But anything was better than staying with his local doctors who wanted to amputate his leg!!! And UCSF is, by all accounts, top-notch in melanoma treatment, so I'm so incredibly grateful that it was an option for us. As I said, I took into account my dad's age — don't know how old your father is — when deciding what route to take because I didn't want to get him into a situation in which he did a brand new treatment and was the guinea pig who make scientists realize that it was a bad treatment. With his age — and with Keytruda such a good bet — it was kind of a no-brainer for me. 

Sorry for writing so much, but I think that you shouldn't worry too much about what clinical trials Ipi would eliminate him from, but rather consider the treatments which have already shown success so as to get him started right away. In my own father's case, waiting too long was not a good option since his melanoma seems to be moving pretty quickly.

Ed is right. The best numbers going are with the ipi/nivo combo. There is an expanded access "availability" of the combo. I'm not sure about exactly where and how….so you'd have to make some calls.  I know that there are offerings for this in New Haven, CT and Allentown, PA…but not sure about others. It is for folks with active disease. Prior ipi is an exclusion. For resected folks….the ipi/nivo trial at Moffitt is still recruiting. There are a variety of ipi/nivo sequential trials ongoing as well. They are performing well, though the data is not complete at this point as the sequential trials are pretty new.  I wish you and your dad my best. Celeste

Ed is right. The best numbers going are with the ipi/nivo combo. There is an expanded access "availability" of the combo. I'm not sure about exactly where and how….so you'd have to make some calls.  I know that there are offerings for this in New Haven, CT and Allentown, PA…but not sure about others. It is for folks with active disease. Prior ipi is an exclusion. For resected folks….the ipi/nivo trial at Moffitt is still recruiting. There are a variety of ipi/nivo sequential trials ongoing as well. They are performing well, though the data is not complete at this point as the sequential trials are pretty new.  I wish you and your dad my best. Celeste

Ed is right. The best numbers going are with the ipi/nivo combo. There is an expanded access "availability" of the combo. I'm not sure about exactly where and how….so you'd have to make some calls.  I know that there are offerings for this in New Haven, CT and Allentown, PA…but not sure about others. It is for folks with active disease. Prior ipi is an exclusion. For resected folks….the ipi/nivo trial at Moffitt is still recruiting. There are a variety of ipi/nivo sequential trials ongoing as well. They are performing well, though the data is not complete at this point as the sequential trials are pretty new.  I wish you and your dad my best. Celeste