Stage 4 Survival

Here's a post I did in August — I've got another scan scheduled for tomorrow, but, so far, thnigs are looking good without recurrence.

I started the double-blind ipi/nivo combination January 2014. The known drug was ipi at 3mg/kg, the unknown was a placebo or nivo at 1mg/kg. My tumor load was significant with mets on scalp, in neck & jaw, multiple lung lesions, vertebrae and lower leg (both soft tissue and bone). I completed the series of four combo infusions over three months when PET/CT showed NED. Although blinded, my oncologist is convinced I had the nivo rather than placebo because he had never seen such a complete and rapid response. Before starting the "maintenance" phase of the trial with bi-weekly infusions of nivo or placebo, my liver enzymes spiked (although I was without symptoms) to >10X normal so I was disqualified for continuation of infusions in the trial. A course of steroids brought my liver enzymes back to normal within about 6 weeks. My most recent CT scan follow up last week continues NED and the oncologist is requesting the trial allow me to stretch out the CT interval from every 6 weeks to every 3 months. During the course of treatment I had minimal side effects, limited to itching and a couple of weeks of fatigue.

Here's a post I did in August — I've got another scan scheduled for tomorrow, but, so far, thnigs are looking good without recurrence.

I started the double-blind ipi/nivo combination January 2014. The known drug was ipi at 3mg/kg, the unknown was a placebo or nivo at 1mg/kg. My tumor load was significant with mets on scalp, in neck & jaw, multiple lung lesions, vertebrae and lower leg (both soft tissue and bone). I completed the series of four combo infusions over three months when PET/CT showed NED. Although blinded, my oncologist is convinced I had the nivo rather than placebo because he had never seen such a complete and rapid response. Before starting the "maintenance" phase of the trial with bi-weekly infusions of nivo or placebo, my liver enzymes spiked (although I was without symptoms) to >10X normal so I was disqualified for continuation of infusions in the trial. A course of steroids brought my liver enzymes back to normal within about 6 weeks. My most recent CT scan follow up last week continues NED and the oncologist is requesting the trial allow me to stretch out the CT interval from every 6 weeks to every 3 months. During the course of treatment I had minimal side effects, limited to itching and a couple of weeks of fatigue.

Here's a post I did in August — I've got another scan scheduled for tomorrow, but, so far, thnigs are looking good without recurrence.

I started the double-blind ipi/nivo combination January 2014. The known drug was ipi at 3mg/kg, the unknown was a placebo or nivo at 1mg/kg. My tumor load was significant with mets on scalp, in neck & jaw, multiple lung lesions, vertebrae and lower leg (both soft tissue and bone). I completed the series of four combo infusions over three months when PET/CT showed NED. Although blinded, my oncologist is convinced I had the nivo rather than placebo because he had never seen such a complete and rapid response. Before starting the "maintenance" phase of the trial with bi-weekly infusions of nivo or placebo, my liver enzymes spiked (although I was without symptoms) to >10X normal so I was disqualified for continuation of infusions in the trial. A course of steroids brought my liver enzymes back to normal within about 6 weeks. My most recent CT scan follow up last week continues NED and the oncologist is requesting the trial allow me to stretch out the CT interval from every 6 weeks to every 3 months. During the course of treatment I had minimal side effects, limited to itching and a couple of weeks of fatigue.

I'm sorry to hear about your friend- we all know it's never easy. I was diagnosed as stage IIIb in 2011 and given a 50% chance of still being alive in 5 years. I know you know that published stats are not particularly up to date, espeically these days with all new advances so I won't say any more about them. I ended up as a stage IV in 2012, with an initially rather light, mostly subcutaneous burden. I chose at that time to proceed with IL-2, which I do not regret and that seemed to actually work on what I had at the time, but shortly after finishing the IL-2 new masses (again, mostly subcutaneous) began to appear. Within a month I had over 30 subcutaneous masses, with additional (not sure how many) in my abdomen and thorax. Many of these were lymph nodes, not in organs, but I did have one around my aorta, a few in the lungs, and several around my kidneys which were causing very significant pain. In addition to that, the MRI showed that I had developed brain mets. I had been hoping to join one of the pd-1/ipi combo trials that were going on at the time but the brain mets disqualified me. Instead I was pushed onto Ipi as a monotherapy with self injections of GM-CSF for 14 days after each infusion, all running alongside WBR. This was not fun. The WBR was successful, the rest not at all. Given the often delayed response from Ipi I had to wait a while before being able to be declared a failure, which meant my tumor burden had increased dramatically. At that point I tried to get onto a different pd-1 trial, but again was denied because of the appearance of new brain mets. As a BRAF+ patient I was placed on the BRAF/MEK combo and the brain mets treated with gamma knife. The combo failed after 5 months, and I again had new brain mets (again treated with gamma knife) but this time was able to get into the Merk PD-1 EAP, where I have been until now. The PD-1 has done absolute wonders for my body (again very high burden, though not necessarily in organs or bones), but unfortunately I just had to have a craniotomy last week for a new brain met that had grown very rapidly. Happily (and thankfully) I did not and do not have any side effects from any of the brain tumors I've had, or the therapies to treat them (including the surgery). 

Long story short- I've been stage IV for over 2 years, much of that time with brain mets. I've never been lucky enough to get to NED, but feel that I certainy have been lucky to get this far and plan to keep going! It sometimes seems that I burn through therapies left and right, but there always seems to be something else to try, and I am greatful for that. I consider myself a sucess story at the moment- I may not always be one, but for now, I think I am- there have definitely been tough times and it seems like every time things are starting to go well I get knocked back down, but I'm still here, still going, and in general doing pretty well despite everything. 

Best of luck to you and your friend

I'm sorry to hear about your friend- we all know it's never easy. I was diagnosed as stage IIIb in 2011 and given a 50% chance of still being alive in 5 years. I know you know that published stats are not particularly up to date, espeically these days with all new advances so I won't say any more about them. I ended up as a stage IV in 2012, with an initially rather light, mostly subcutaneous burden. I chose at that time to proceed with IL-2, which I do not regret and that seemed to actually work on what I had at the time, but shortly after finishing the IL-2 new masses (again, mostly subcutaneous) began to appear. Within a month I had over 30 subcutaneous masses, with additional (not sure how many) in my abdomen and thorax. Many of these were lymph nodes, not in organs, but I did have one around my aorta, a few in the lungs, and several around my kidneys which were causing very significant pain. In addition to that, the MRI showed that I had developed brain mets. I had been hoping to join one of the pd-1/ipi combo trials that were going on at the time but the brain mets disqualified me. Instead I was pushed onto Ipi as a monotherapy with self injections of GM-CSF for 14 days after each infusion, all running alongside WBR. This was not fun. The WBR was successful, the rest not at all. Given the often delayed response from Ipi I had to wait a while before being able to be declared a failure, which meant my tumor burden had increased dramatically. At that point I tried to get onto a different pd-1 trial, but again was denied because of the appearance of new brain mets. As a BRAF+ patient I was placed on the BRAF/MEK combo and the brain mets treated with gamma knife. The combo failed after 5 months, and I again had new brain mets (again treated with gamma knife) but this time was able to get into the Merk PD-1 EAP, where I have been until now. The PD-1 has done absolute wonders for my body (again very high burden, though not necessarily in organs or bones), but unfortunately I just had to have a craniotomy last week for a new brain met that had grown very rapidly. Happily (and thankfully) I did not and do not have any side effects from any of the brain tumors I've had, or the therapies to treat them (including the surgery). 

Long story short- I've been stage IV for over 2 years, much of that time with brain mets. I've never been lucky enough to get to NED, but feel that I certainy have been lucky to get this far and plan to keep going! It sometimes seems that I burn through therapies left and right, but there always seems to be something else to try, and I am greatful for that. I consider myself a sucess story at the moment- I may not always be one, but for now, I think I am- there have definitely been tough times and it seems like every time things are starting to go well I get knocked back down, but I'm still here, still going, and in general doing pretty well despite everything. 

Best of luck to you and your friend

I'm sorry to hear about your friend- we all know it's never easy. I was diagnosed as stage IIIb in 2011 and given a 50% chance of still being alive in 5 years. I know you know that published stats are not particularly up to date, espeically these days with all new advances so I won't say any more about them. I ended up as a stage IV in 2012, with an initially rather light, mostly subcutaneous burden. I chose at that time to proceed with IL-2, which I do not regret and that seemed to actually work on what I had at the time, but shortly after finishing the IL-2 new masses (again, mostly subcutaneous) began to appear. Within a month I had over 30 subcutaneous masses, with additional (not sure how many) in my abdomen and thorax. Many of these were lymph nodes, not in organs, but I did have one around my aorta, a few in the lungs, and several around my kidneys which were causing very significant pain. In addition to that, the MRI showed that I had developed brain mets. I had been hoping to join one of the pd-1/ipi combo trials that were going on at the time but the brain mets disqualified me. Instead I was pushed onto Ipi as a monotherapy with self injections of GM-CSF for 14 days after each infusion, all running alongside WBR. This was not fun. The WBR was successful, the rest not at all. Given the often delayed response from Ipi I had to wait a while before being able to be declared a failure, which meant my tumor burden had increased dramatically. At that point I tried to get onto a different pd-1 trial, but again was denied because of the appearance of new brain mets. As a BRAF+ patient I was placed on the BRAF/MEK combo and the brain mets treated with gamma knife. The combo failed after 5 months, and I again had new brain mets (again treated with gamma knife) but this time was able to get into the Merk PD-1 EAP, where I have been until now. The PD-1 has done absolute wonders for my body (again very high burden, though not necessarily in organs or bones), but unfortunately I just had to have a craniotomy last week for a new brain met that had grown very rapidly. Happily (and thankfully) I did not and do not have any side effects from any of the brain tumors I've had, or the therapies to treat them (including the surgery). 

Long story short- I've been stage IV for over 2 years, much of that time with brain mets. I've never been lucky enough to get to NED, but feel that I certainy have been lucky to get this far and plan to keep going! It sometimes seems that I burn through therapies left and right, but there always seems to be something else to try, and I am greatful for that. I consider myself a sucess story at the moment- I may not always be one, but for now, I think I am- there have definitely been tough times and it seems like every time things are starting to go well I get knocked back down, but I'm still here, still going, and in general doing pretty well despite everything. 

Best of luck to you and your friend

Josh, I had a heavy tumor burden at the time of my diagnosis.  An NIH doctor speculated that I had weeks to live had my disease been left untreated.  I am BRAF positive and I started on Tafinlar and Mekinist (BRAF and MEK inhibitors).  Theses drugs reduced my burden by approx 80 percent, giving me a shot at ipi and, at some point in the future, PD-1.  I'm coming up on my 14th month of treatment and my scans remain stable with continuing minor reduction.  If your friend has a heavy tumor burden and is BRAF positive, then I think the prevailing protocol is to start with Tafinlar and Mekinist as an initial treatment.

Josh, I had a heavy tumor burden at the time of my diagnosis.  An NIH doctor speculated that I had weeks to live had my disease been left untreated.  I am BRAF positive and I started on Tafinlar and Mekinist (BRAF and MEK inhibitors).  Theses drugs reduced my burden by approx 80 percent, giving me a shot at ipi and, at some point in the future, PD-1.  I'm coming up on my 14th month of treatment and my scans remain stable with continuing minor reduction.  If your friend has a heavy tumor burden and is BRAF positive, then I think the prevailing protocol is to start with Tafinlar and Mekinist as an initial treatment.

Josh, I had a heavy tumor burden at the time of my diagnosis.  An NIH doctor speculated that I had weeks to live had my disease been left untreated.  I am BRAF positive and I started on Tafinlar and Mekinist (BRAF and MEK inhibitors).  Theses drugs reduced my burden by approx 80 percent, giving me a shot at ipi and, at some point in the future, PD-1.  I'm coming up on my 14th month of treatment and my scans remain stable with continuing minor reduction.  If your friend has a heavy tumor burden and is BRAF positive, then I think the prevailing protocol is to start with Tafinlar and Mekinist as an initial treatment.