NED/NERD Status and Scans/Appointments/Treatment

Ashley, glad to hear about your great scan results and continuing success on the combo!

Ashley, glad to hear about your great scan results and continuing success on the combo!

Ashley, glad to hear about your great scan results and continuing success on the combo!

Ashley,

I did the combo under the BMS protocol, starting in January 2014. After the 4th combo dose my ALT/AST (liver enzymes) became elevated enought to make me ineligible to continue on the trial. At the start I had advanced Stage 4 with aggressive mets on scalp, in TMJ, neck, lungs, vertebrae, leg muscles and leg bones. After the 4 combo doses, tumors were either gone or minimal activity on PET. I have had no other treatment since that time and q 3 month PET scans showed clearing of all lesions, even the bone thinning from the bone mets. I have PET scans q 6 months now (2 years out) and at 3 years will probably stretch them out to once a year if there is no recurrence or symptoms.

We're treading new ground here and there does not seem to be a clear consensus for post immuno treatment monitorring. Naturally, every little ache, tingle or hiccup is enough to get me thinking recurrence, but a few deep breaths (and maybe a glass of wine or two) help me get trhough those periods and the confidence of negative PET scans help also.

dvd

Ashley,

I did the combo under the BMS protocol, starting in January 2014. After the 4th combo dose my ALT/AST (liver enzymes) became elevated enought to make me ineligible to continue on the trial. At the start I had advanced Stage 4 with aggressive mets on scalp, in TMJ, neck, lungs, vertebrae, leg muscles and leg bones. After the 4 combo doses, tumors were either gone or minimal activity on PET. I have had no other treatment since that time and q 3 month PET scans showed clearing of all lesions, even the bone thinning from the bone mets. I have PET scans q 6 months now (2 years out) and at 3 years will probably stretch them out to once a year if there is no recurrence or symptoms.

We're treading new ground here and there does not seem to be a clear consensus for post immuno treatment monitorring. Naturally, every little ache, tingle or hiccup is enough to get me thinking recurrence, but a few deep breaths (and maybe a glass of wine or two) help me get trhough those periods and the confidence of negative PET scans help also.

dvd

Ashley,

I did the combo under the BMS protocol, starting in January 2014. After the 4th combo dose my ALT/AST (liver enzymes) became elevated enought to make me ineligible to continue on the trial. At the start I had advanced Stage 4 with aggressive mets on scalp, in TMJ, neck, lungs, vertebrae, leg muscles and leg bones. After the 4 combo doses, tumors were either gone or minimal activity on PET. I have had no other treatment since that time and q 3 month PET scans showed clearing of all lesions, even the bone thinning from the bone mets. I have PET scans q 6 months now (2 years out) and at 3 years will probably stretch them out to once a year if there is no recurrence or symptoms.

We're treading new ground here and there does not seem to be a clear consensus for post immuno treatment monitorring. Naturally, every little ache, tingle or hiccup is enough to get me thinking recurrence, but a few deep breaths (and maybe a glass of wine or two) help me get trhough those periods and the confidence of negative PET scans help also.

dvd

Hi Ashley,

This is a great question and a curiosity of mine as well. I started the combo in October 2015, but due to 2 major episodes of severe side effects and prolonged steroid treatment (one involving my eyes / retina detachment, and the other involving inflammation in my lungs), I haven't started the Opdivo maintenance protocol yet. But I've been wondering how necessary it is (the maintenance) and how long it will go on.

Is anyone aware of any studies that prove the mono maintenance is necessary to keep the melanoma at bay? Or would such a study not be beneficial to the pharmaceutical companies that finance the trials, so maybe none have been done? 

Anecdotally, has anyone here just stopped treatment after the combo and still obtained NED status, and if so, for how long?

I have lots of questions – so grateful that we have this forum to compare notes!!!

All best,

Maria

Hi Ashley,

This is a great question and a curiosity of mine as well. I started the combo in October 2015, but due to 2 major episodes of severe side effects and prolonged steroid treatment (one involving my eyes / retina detachment, and the other involving inflammation in my lungs), I haven't started the Opdivo maintenance protocol yet. But I've been wondering how necessary it is (the maintenance) and how long it will go on.

Is anyone aware of any studies that prove the mono maintenance is necessary to keep the melanoma at bay? Or would such a study not be beneficial to the pharmaceutical companies that finance the trials, so maybe none have been done? 

Anecdotally, has anyone here just stopped treatment after the combo and still obtained NED status, and if so, for how long?

I have lots of questions – so grateful that we have this forum to compare notes!!!

All best,

Maria

Hi Ashley,

This is a great question and a curiosity of mine as well. I started the combo in October 2015, but due to 2 major episodes of severe side effects and prolonged steroid treatment (one involving my eyes / retina detachment, and the other involving inflammation in my lungs), I haven't started the Opdivo maintenance protocol yet. But I've been wondering how necessary it is (the maintenance) and how long it will go on.

Is anyone aware of any studies that prove the mono maintenance is necessary to keep the melanoma at bay? Or would such a study not be beneficial to the pharmaceutical companies that finance the trials, so maybe none have been done? 

Anecdotally, has anyone here just stopped treatment after the combo and still obtained NED status, and if so, for how long?

I have lots of questions – so grateful that we have this forum to compare notes!!!

All best,

Maria

Hey Ashley,

Congrats on the great scans.

I was on a sequential trial of Opdivo and Yervoy from Aug 13 to Aug 15.  I had the option to continue on Opdivo at the end of the 2 year trial but after consulting several specialist I decided to come off treatment.  It's my impression that most of the experts are advising that 2 years is more than enough time on treatment.  Many are going to max benefit (NED or stable disease) and then treating anywhere from 3 to 1 year after that.  As I was trying to make my decision on whether to stop treatment I was hoping to find some data that showed how patients responded after stopping treatment.  I could not find any.  I asked Dr. Wolchok that question just 3 months ago and he said the data doesn't exist yet.  Maybe we'll see some data on this subject at ASCO in a couple months.  One thing that really influenced my decision to stop treatment was my consult with Dr. Jeff Weber.  He told me his first phase I anti-PD1 trial had 15 responders and none of those 15 have recurred since stopping treatment.  Some of those are probably 2 to 3 years post treatment now.  It's a very small sample but still pretty impressive none the less.  That's not to say you can't recur after stopping treatment because there are patients that have.  The good news is it seems that people who do recur quickly respond once treatment is restarted.  There are a few pretty smart docs out there recommending their patients stay on the treatment longterm.  Dr. Hodi is one of those.  Laura (Sweetaugust) is one of those patients who may respond to this thread.  I think she's been on pembro for about 3 years now. 

If you have virtually no side effects I can definitely see your doctors point of view to be aggressive and kind of go with the "if it's not broke" approach.  Here's just a couple counter points to that approach.  I've heard on this site of a doctor telling one of our members that there were patients who were doing fine on treatment and decided to continue only to get hit hard with an adverse side effect later.  Those patients later regretted their decision to continue treamtment.  I think there are cases where the side effects are cummulative over time. 

Another thought is what the treatment does to our immune system over time.  It was either Dr. Weber or Dr Wolchok that made the comment to me that they are starting to look at that very thing.  Essentially we are putting our immune system in overdrive and we don't know yet what that does over a long time.  Can our immune system reach a point of exhaustion or be degraded. 

As far as scan schedule I've worked out with my oncologist for scans every 3 months for the first year post trial with a MRI every 6 months.  I'll probably move to every 4 months the second year or reevaluate based on more data hopefully available.  

Sorry if reply makes the decison harder rather than easier.  It's definitely not a easy decision without the numbers to back it up.  I struggled for months over my decision but in the end it's like most melanoma treatment decisions.  It's a very personal decision and whatever you choose has to be the right choice for you and you have to feel good about it.

Brian

Hey Ashley,

Congrats on the great scans.

I was on a sequential trial of Opdivo and Yervoy from Aug 13 to Aug 15.  I had the option to continue on Opdivo at the end of the 2 year trial but after consulting several specialist I decided to come off treatment.  It's my impression that most of the experts are advising that 2 years is more than enough time on treatment.  Many are going to max benefit (NED or stable disease) and then treating anywhere from 3 to 1 year after that.  As I was trying to make my decision on whether to stop treatment I was hoping to find some data that showed how patients responded after stopping treatment.  I could not find any.  I asked Dr. Wolchok that question just 3 months ago and he said the data doesn't exist yet.  Maybe we'll see some data on this subject at ASCO in a couple months.  One thing that really influenced my decision to stop treatment was my consult with Dr. Jeff Weber.  He told me his first phase I anti-PD1 trial had 15 responders and none of those 15 have recurred since stopping treatment.  Some of those are probably 2 to 3 years post treatment now.  It's a very small sample but still pretty impressive none the less.  That's not to say you can't recur after stopping treatment because there are patients that have.  The good news is it seems that people who do recur quickly respond once treatment is restarted.  There are a few pretty smart docs out there recommending their patients stay on the treatment longterm.  Dr. Hodi is one of those.  Laura (Sweetaugust) is one of those patients who may respond to this thread.  I think she's been on pembro for about 3 years now. 

If you have virtually no side effects I can definitely see your doctors point of view to be aggressive and kind of go with the "if it's not broke" approach.  Here's just a couple counter points to that approach.  I've heard on this site of a doctor telling one of our members that there were patients who were doing fine on treatment and decided to continue only to get hit hard with an adverse side effect later.  Those patients later regretted their decision to continue treamtment.  I think there are cases where the side effects are cummulative over time. 

Another thought is what the treatment does to our immune system over time.  It was either Dr. Weber or Dr Wolchok that made the comment to me that they are starting to look at that very thing.  Essentially we are putting our immune system in overdrive and we don't know yet what that does over a long time.  Can our immune system reach a point of exhaustion or be degraded. 

As far as scan schedule I've worked out with my oncologist for scans every 3 months for the first year post trial with a MRI every 6 months.  I'll probably move to every 4 months the second year or reevaluate based on more data hopefully available.  

Sorry if reply makes the decison harder rather than easier.  It's definitely not a easy decision without the numbers to back it up.  I struggled for months over my decision but in the end it's like most melanoma treatment decisions.  It's a very personal decision and whatever you choose has to be the right choice for you and you have to feel good about it.

Brian

Hey Ashley,

Congrats on the great scans.

I was on a sequential trial of Opdivo and Yervoy from Aug 13 to Aug 15.  I had the option to continue on Opdivo at the end of the 2 year trial but after consulting several specialist I decided to come off treatment.  It's my impression that most of the experts are advising that 2 years is more than enough time on treatment.  Many are going to max benefit (NED or stable disease) and then treating anywhere from 3 to 1 year after that.  As I was trying to make my decision on whether to stop treatment I was hoping to find some data that showed how patients responded after stopping treatment.  I could not find any.  I asked Dr. Wolchok that question just 3 months ago and he said the data doesn't exist yet.  Maybe we'll see some data on this subject at ASCO in a couple months.  One thing that really influenced my decision to stop treatment was my consult with Dr. Jeff Weber.  He told me his first phase I anti-PD1 trial had 15 responders and none of those 15 have recurred since stopping treatment.  Some of those are probably 2 to 3 years post treatment now.  It's a very small sample but still pretty impressive none the less.  That's not to say you can't recur after stopping treatment because there are patients that have.  The good news is it seems that people who do recur quickly respond once treatment is restarted.  There are a few pretty smart docs out there recommending their patients stay on the treatment longterm.  Dr. Hodi is one of those.  Laura (Sweetaugust) is one of those patients who may respond to this thread.  I think she's been on pembro for about 3 years now. 

If you have virtually no side effects I can definitely see your doctors point of view to be aggressive and kind of go with the "if it's not broke" approach.  Here's just a couple counter points to that approach.  I've heard on this site of a doctor telling one of our members that there were patients who were doing fine on treatment and decided to continue only to get hit hard with an adverse side effect later.  Those patients later regretted their decision to continue treamtment.  I think there are cases where the side effects are cummulative over time. 

Another thought is what the treatment does to our immune system over time.  It was either Dr. Weber or Dr Wolchok that made the comment to me that they are starting to look at that very thing.  Essentially we are putting our immune system in overdrive and we don't know yet what that does over a long time.  Can our immune system reach a point of exhaustion or be degraded. 

As far as scan schedule I've worked out with my oncologist for scans every 3 months for the first year post trial with a MRI every 6 months.  I'll probably move to every 4 months the second year or reevaluate based on more data hopefully available.  

Sorry if reply makes the decison harder rather than easier.  It's definitely not a easy decision without the numbers to back it up.  I struggled for months over my decision but in the end it's like most melanoma treatment decisions.  It's a very personal decision and whatever you choose has to be the right choice for you and you have to feel good about it.

Brian

Hi Ashley,

I think that more and more researchers are comming round to the opinion that one need not continue immunotherapy forever.  Dr. Weber has certainly made it clear that he thinks a certain amount of the meds will provide all the benefit that they can and continued administration is unnecessary.  In other words, to continue to administer anti-PD1 (for instance) will not provide any additional benefit…as the body's immune response will be maxed out at some point….and cannot be made perform any better….though you can set the patient up for difficult side effects.  I participated in the Nivo (Opdivo) trial he ran at Moffitt form 2010 to 2013 (First dose was December 2010…last was in June of 2013).  We were given infusions every 2 weeks for 6 months, then every 3 months for 2 additional years.  The trial was limited to that time frame.  Weber has told me directly that he doubts we should have been given the meds for even that long.  However, there are plenty of other researchers who do not share that view….and….the zillion dollar question is:  How long IS the needed amount of meds exactly??????

As far as follow-up….during the active part of the trial I was scanned (CT's of neck, chest and pelvis with an MRI of the head) every 3 months.  Once infusions were complete I was scanned every three months for one more year, every 6 months for another year….and now I am YEARLY!!!!  I will be having those scans in August or September.  And…..I have been NED since 2010.

I wish you my best.  Celeste

Hi Ashley,

I think that more and more researchers are comming round to the opinion that one need not continue immunotherapy forever.  Dr. Weber has certainly made it clear that he thinks a certain amount of the meds will provide all the benefit that they can and continued administration is unnecessary.  In other words, to continue to administer anti-PD1 (for instance) will not provide any additional benefit…as the body's immune response will be maxed out at some point….and cannot be made perform any better….though you can set the patient up for difficult side effects.  I participated in the Nivo (Opdivo) trial he ran at Moffitt form 2010 to 2013 (First dose was December 2010…last was in June of 2013).  We were given infusions every 2 weeks for 6 months, then every 3 months for 2 additional years.  The trial was limited to that time frame.  Weber has told me directly that he doubts we should have been given the meds for even that long.  However, there are plenty of other researchers who do not share that view….and….the zillion dollar question is:  How long IS the needed amount of meds exactly??????

As far as follow-up….during the active part of the trial I was scanned (CT's of neck, chest and pelvis with an MRI of the head) every 3 months.  Once infusions were complete I was scanned every three months for one more year, every 6 months for another year….and now I am YEARLY!!!!  I will be having those scans in August or September.  And…..I have been NED since 2010.

I wish you my best.  Celeste

Hi Ashley,

I think that more and more researchers are comming round to the opinion that one need not continue immunotherapy forever.  Dr. Weber has certainly made it clear that he thinks a certain amount of the meds will provide all the benefit that they can and continued administration is unnecessary.  In other words, to continue to administer anti-PD1 (for instance) will not provide any additional benefit…as the body's immune response will be maxed out at some point….and cannot be made perform any better….though you can set the patient up for difficult side effects.  I participated in the Nivo (Opdivo) trial he ran at Moffitt form 2010 to 2013 (First dose was December 2010…last was in June of 2013).  We were given infusions every 2 weeks for 6 months, then every 3 months for 2 additional years.  The trial was limited to that time frame.  Weber has told me directly that he doubts we should have been given the meds for even that long.  However, there are plenty of other researchers who do not share that view….and….the zillion dollar question is:  How long IS the needed amount of meds exactly??????

As far as follow-up….during the active part of the trial I was scanned (CT's of neck, chest and pelvis with an MRI of the head) every 3 months.  Once infusions were complete I was scanned every three months for one more year, every 6 months for another year….and now I am YEARLY!!!!  I will be having those scans in August or September.  And…..I have been NED since 2010.

I wish you my best.  Celeste