2nd Pembro treatment down, how many to go?

Sorry you're having to face stage IV. At this point, oncologists (here in the U.S.) are still trying to determine the best stopping point for individual patients. Initially, the thought process was 18 months to 2 years. My former oncologist (he moved to take a position at MD Anderson, but we still keep in touch) said they are still learning now that more and more patients have been on the drug for a couple of years beyond FDA approval. However, he mentioned that at a recent (last week) conference on the east coast, new recommendations were swirling, due to the number of folks suffering autoimmune responses. Top oncologists are now using the new guidelines of 2 years… oooooor… 6 months beyond stabilization or elimination of measurable disease. Depending how rapidly and/or completely your body responds to the medication, that timeline might vary greatly. Their educated assumption is that if new lesions were to crop up post treatment, it could be brought back under control by starting infusions again, and even possibly continuing with "maintenance doses" spread further out than the typical 3 week regimen. Hope this helps. : )

Sorry you're having to face stage IV. At this point, oncologists (here in the U.S.) are still trying to determine the best stopping point for individual patients. Initially, the thought process was 18 months to 2 years. My former oncologist (he moved to take a position at MD Anderson, but we still keep in touch) said they are still learning now that more and more patients have been on the drug for a couple of years beyond FDA approval. However, he mentioned that at a recent (last week) conference on the east coast, new recommendations were swirling, due to the number of folks suffering autoimmune responses. Top oncologists are now using the new guidelines of 2 years… oooooor… 6 months beyond stabilization or elimination of measurable disease. Depending how rapidly and/or completely your body responds to the medication, that timeline might vary greatly. Their educated assumption is that if new lesions were to crop up post treatment, it could be brought back under control by starting infusions again, and even possibly continuing with "maintenance doses" spread further out than the typical 3 week regimen. Hope this helps. : )

Sorry you're having to face stage IV. At this point, oncologists (here in the U.S.) are still trying to determine the best stopping point for individual patients. Initially, the thought process was 18 months to 2 years. My former oncologist (he moved to take a position at MD Anderson, but we still keep in touch) said they are still learning now that more and more patients have been on the drug for a couple of years beyond FDA approval. However, he mentioned that at a recent (last week) conference on the east coast, new recommendations were swirling, due to the number of folks suffering autoimmune responses. Top oncologists are now using the new guidelines of 2 years… oooooor… 6 months beyond stabilization or elimination of measurable disease. Depending how rapidly and/or completely your body responds to the medication, that timeline might vary greatly. Their educated assumption is that if new lesions were to crop up post treatment, it could be brought back under control by starting infusions again, and even possibly continuing with "maintenance doses" spread further out than the typical 3 week regimen. Hope this helps. : )

Hi!

I became stage 4 in February with a small tumor to my liver.  I started on pembro right away, even before removing it because my dr is so optimistic about pembro.  My dr also said we would arbitrarily decide on a time to stop if it worked and that most studies have been done up to two years.  My liver tumor stayed stable for 6 months, which was good but not great results.  We decided it was time to have the tumor removed at that point and expected to continue pembro, but ultimately my oncologist suggested we stop.  When the tumor was removed the pathology did show that the pembro was doing its job.  I thought it would be a difficult decision to stop the pembro but honestly it wasn't.  I'm 34 and had a low tumor burden and zero side effects (thankfully)!  My dr is really looking at this as a manageable disease, he excitedly talks about the new drugs in the works.  He suggested that if we need to we can start on it again right away, but for the time being let's avoid some of the nasty side effects.  I've been off for two months and really feel great.  Of course I'll be freaking out next month when I have scans but I would've been anyway.

My son will be 6 next week.  I was diagnosed with stage 3a melanoma when he was 6 months old, then became 3c when he was 2, then stage 4 when he was 5.  I completely sympathize with your desire to have another child.  That for me has been so so difficult.  I just hope the pembro is all we ever need.  Take care.  Caitlin 

Hi!

I became stage 4 in February with a small tumor to my liver.  I started on pembro right away, even before removing it because my dr is so optimistic about pembro.  My dr also said we would arbitrarily decide on a time to stop if it worked and that most studies have been done up to two years.  My liver tumor stayed stable for 6 months, which was good but not great results.  We decided it was time to have the tumor removed at that point and expected to continue pembro, but ultimately my oncologist suggested we stop.  When the tumor was removed the pathology did show that the pembro was doing its job.  I thought it would be a difficult decision to stop the pembro but honestly it wasn't.  I'm 34 and had a low tumor burden and zero side effects (thankfully)!  My dr is really looking at this as a manageable disease, he excitedly talks about the new drugs in the works.  He suggested that if we need to we can start on it again right away, but for the time being let's avoid some of the nasty side effects.  I've been off for two months and really feel great.  Of course I'll be freaking out next month when I have scans but I would've been anyway.

My son will be 6 next week.  I was diagnosed with stage 3a melanoma when he was 6 months old, then became 3c when he was 2, then stage 4 when he was 5.  I completely sympathize with your desire to have another child.  That for me has been so so difficult.  I just hope the pembro is all we ever need.  Take care.  Caitlin 

Hi!

I became stage 4 in February with a small tumor to my liver.  I started on pembro right away, even before removing it because my dr is so optimistic about pembro.  My dr also said we would arbitrarily decide on a time to stop if it worked and that most studies have been done up to two years.  My liver tumor stayed stable for 6 months, which was good but not great results.  We decided it was time to have the tumor removed at that point and expected to continue pembro, but ultimately my oncologist suggested we stop.  When the tumor was removed the pathology did show that the pembro was doing its job.  I thought it would be a difficult decision to stop the pembro but honestly it wasn't.  I'm 34 and had a low tumor burden and zero side effects (thankfully)!  My dr is really looking at this as a manageable disease, he excitedly talks about the new drugs in the works.  He suggested that if we need to we can start on it again right away, but for the time being let's avoid some of the nasty side effects.  I've been off for two months and really feel great.  Of course I'll be freaking out next month when I have scans but I would've been anyway.

My son will be 6 next week.  I was diagnosed with stage 3a melanoma when he was 6 months old, then became 3c when he was 2, then stage 4 when he was 5.  I completely sympathize with your desire to have another child.  That for me has been so so difficult.  I just hope the pembro is all we ever need.  Take care.  Caitlin 

I started pembro in August 2014 and in 3 months, all but the largest (8cm lung) Mets were gone. By march I started having serious autoimmune problems ( whole body inflamed could not move much). I persevered with pembro trying to make the 1year mark but I had to stop in June, even though I was on high dose serious for the side effects. 

My big tumour shrunk down to 11 mm and now I've had it resected as it started to grow again. But I've always wondered if my very quick response meant I did not need to take it for so long and may not have had all those side effects. 

Of course I don't care either way. It is all worth it. 

How wonderful that you have your beautiful daughter. Makes us want to live life to the full doesnt it? I think you are young enough to have more children if you want so I  hope this all gets settled and you can do that. My children are 8 years apart and it was twice the fun!

Anne-Louise 

I started pembro in August 2014 and in 3 months, all but the largest (8cm lung) Mets were gone. By march I started having serious autoimmune problems ( whole body inflamed could not move much). I persevered with pembro trying to make the 1year mark but I had to stop in June, even though I was on high dose serious for the side effects. 

My big tumour shrunk down to 11 mm and now I've had it resected as it started to grow again. But I've always wondered if my very quick response meant I did not need to take it for so long and may not have had all those side effects. 

Of course I don't care either way. It is all worth it. 

How wonderful that you have your beautiful daughter. Makes us want to live life to the full doesnt it? I think you are young enough to have more children if you want so I  hope this all gets settled and you can do that. My children are 8 years apart and it was twice the fun!

Anne-Louise 

I started pembro in August 2014 and in 3 months, all but the largest (8cm lung) Mets were gone. By march I started having serious autoimmune problems ( whole body inflamed could not move much). I persevered with pembro trying to make the 1year mark but I had to stop in June, even though I was on high dose serious for the side effects. 

My big tumour shrunk down to 11 mm and now I've had it resected as it started to grow again. But I've always wondered if my very quick response meant I did not need to take it for so long and may not have had all those side effects. 

Of course I don't care either way. It is all worth it. 

How wonderful that you have your beautiful daughter. Makes us want to live life to the full doesnt it? I think you are young enough to have more children if you want so I  hope this all gets settled and you can do that. My children are 8 years apart and it was twice the fun!

Anne-Louise