palmspringswalt

I've had much the same experience as Laurie.

I've been on MK-3475 for slightly over 3 years at 10 mg/kg infused every 2 weeks.

I have NED but I have had side effects.  The most recent was autoimmune hepatitis which was reversed by stopping the infusions temporarily and doing high dose prednisone therapy.  I also have constant low grade fatigue.

My doctor has also suggested staying on MK-3475 till the durability picture is a bit clearer.  Also, if I drop out I would guess my insurance company would refuse to pay for Keytruda based on my experience with them.

For the present I've been able to stay in the trial and have decided to stay in the trial.  What happens in the future I don't know! 

I've had much the same experience as Laurie.

I've been on MK-3475 for slightly over 3 years at 10 mg/kg infused every 2 weeks.

I have NED but I have had side effects.  The most recent was autoimmune hepatitis which was reversed by stopping the infusions temporarily and doing high dose prednisone therapy.  I also have constant low grade fatigue.

My doctor has also suggested staying on MK-3475 till the durability picture is a bit clearer.  Also, if I drop out I would guess my insurance company would refuse to pay for Keytruda based on my experience with them.

For the present I've been able to stay in the trial and have decided to stay in the trial.  What happens in the future I don't know! 

I've had much the same experience as Laurie.

I've been on MK-3475 for slightly over 3 years at 10 mg/kg infused every 2 weeks.

I have NED but I have had side effects.  The most recent was autoimmune hepatitis which was reversed by stopping the infusions temporarily and doing high dose prednisone therapy.  I also have constant low grade fatigue.

My doctor has also suggested staying on MK-3475 till the durability picture is a bit clearer.  Also, if I drop out I would guess my insurance company would refuse to pay for Keytruda based on my experience with them.

For the present I've been able to stay in the trial and have decided to stay in the trial.  What happens in the future I don't know! 

I've been in the clinical trial for Keytruda for almost 3 years now and have never had any side effects following an infusion which I get every 2 weeks at 10 mg/kg of body weight (highest dose).  I've actually gone on 8 mile hikes immediately following an infusion.  I have had reactions but those took several days or  so to appear and may not have been related to the actual infusion.  Everyone is different.

I've been in the clinical trial for Keytruda for almost 3 years now and have never had any side effects following an infusion which I get every 2 weeks at 10 mg/kg of body weight (highest dose).  I've actually gone on 8 mile hikes immediately following an infusion.  I have had reactions but those took several days or  so to appear and may not have been related to the actual infusion.  Everyone is different.

I've been in the clinical trial for Keytruda for almost 3 years now and have never had any side effects following an infusion which I get every 2 weeks at 10 mg/kg of body weight (highest dose).  I've actually gone on 8 mile hikes immediately following an infusion.  I have had reactions but those took several days or  so to appear and may not have been related to the actual infusion.  Everyone is different.

I've been in the clinical trial for Keytruda for almost 3 years now and have never had any side effects following an infusion which I get every 2 weeks at 10 mg/kg of body weight (highest dose).  I've actually gone on 8 mile hikes immediately following an infusion.  I have had reactions but those took several days or to appear and may not have been related to the actual infusion.  Everyone is different.

I've been in the clinical trial for Keytruda for almost 3 years now and have never had any side effects following an infusion which I get every 2 weeks at 10 mg/kg of body weight (highest dose).  I've actually gone on 8 mile hikes immediately following an infusion.  I have had reactions but those took several days or to appear and may not have been related to the actual infusion.  Everyone is different.

I've been in the clinical trial for Keytruda for almost 3 years now and have never had any side effects following an infusion which I get every 2 weeks at 10 mg/kg of body weight (highest dose).  I've actually gone on 8 mile hikes immediately following an infusion.  I have had reactions but those took several days or to appear and may not have been related to the actual infusion.  Everyone is different.

Unfortunately, you may well spend considerable time fighting with your insurance company.  My insurance company has been useless even when I asked for their help.  I've had to pay for scans myself then file appeals.  Since I'm on Medicare the denied appeals are automatically reviewed by Maximus which has always found in my favor.  I'm sure your insurance situation is different than mine but I would urge you to fight and ask your doctor or his staff for help.  Once you are in a clinical trial certain laws apply to what insurance companies must cover.

You have learned a lot in a short time.  I think you have a great plan!!

Unfortunately, you may well spend considerable time fighting with your insurance company.  My insurance company has been useless even when I asked for their help.  I've had to pay for scans myself then file appeals.  Since I'm on Medicare the denied appeals are automatically reviewed by Maximus which has always found in my favor.  I'm sure your insurance situation is different than mine but I would urge you to fight and ask your doctor or his staff for help.  Once you are in a clinical trial certain laws apply to what insurance companies must cover.

You have learned a lot in a short time.  I think you have a great plan!!

Unfortunately, you may well spend considerable time fighting with your insurance company.  My insurance company has been useless even when I asked for their help.  I've had to pay for scans myself then file appeals.  Since I'm on Medicare the denied appeals are automatically reviewed by Maximus which has always found in my favor.  I'm sure your insurance situation is different than mine but I would urge you to fight and ask your doctor or his staff for help.  Once you are in a clinical trial certain laws apply to what insurance companies must cover.

You have learned a lot in a short time.  I think you have a great plan!!

You are asking all the right questions.

Dr. Steven O'Day has loads of experience so you need to discuss with him the subject of systemic treatment versus surgery for your specific case.  I'm not a patient of Dr. O'Day (I go to The Angeles Cliniic and am seeing Dr. Boasberg.)  In my case Dr. Boasberg talked with my surgical oncologist and both recommended no surgery but immediately start systemic treatment with PD1.  I believe in my case that was the correct decision.  Again it's an important discussion you need to have with Dr. O'Day.

You also need to discuss your concern about your deafness and immune system with Dr. O'Day.  Certainly ipi or PD1 will put your immune system in high gear if you are a responder.

It's not clear to me why Dr. O'Day wants to start you on ipi and then PD1 if you fail ipi.  It could be because that is what he has available right now with PD1.  You might want to ask him why not start immediately on PD1 since the side effects are less and the outcomes better (for more people) than with ipi.  Ask him if he knows where there are PD1 seats open.

From experience I understand what you are going through right now.  You need to continue discussion with your docs until you are comfortable with your treatment decision!

You are asking all the right questions.

Dr. Steven O'Day has loads of experience so you need to discuss with him the subject of systemic treatment versus surgery for your specific case.  I'm not a patient of Dr. O'Day (I go to The Angeles Cliniic and am seeing Dr. Boasberg.)  In my case Dr. Boasberg talked with my surgical oncologist and both recommended no surgery but immediately start systemic treatment with PD1.  I believe in my case that was the correct decision.  Again it's an important discussion you need to have with Dr. O'Day.

You also need to discuss your concern about your deafness and immune system with Dr. O'Day.  Certainly ipi or PD1 will put your immune system in high gear if you are a responder.

It's not clear to me why Dr. O'Day wants to start you on ipi and then PD1 if you fail ipi.  It could be because that is what he has available right now with PD1.  You might want to ask him why not start immediately on PD1 since the side effects are less and the outcomes better (for more people) than with ipi.  Ask him if he knows where there are PD1 seats open.

From experience I understand what you are going through right now.  You need to continue discussion with your docs until you are comfortable with your treatment decision!

You are asking all the right questions.

Dr. Steven O'Day has loads of experience so you need to discuss with him the subject of systemic treatment versus surgery for your specific case.  I'm not a patient of Dr. O'Day (I go to The Angeles Cliniic and am seeing Dr. Boasberg.)  In my case Dr. Boasberg talked with my surgical oncologist and both recommended no surgery but immediately start systemic treatment with PD1.  I believe in my case that was the correct decision.  Again it's an important discussion you need to have with Dr. O'Day.

You also need to discuss your concern about your deafness and immune system with Dr. O'Day.  Certainly ipi or PD1 will put your immune system in high gear if you are a responder.

It's not clear to me why Dr. O'Day wants to start you on ipi and then PD1 if you fail ipi.  It could be because that is what he has available right now with PD1.  You might want to ask him why not start immediately on PD1 since the side effects are less and the outcomes better (for more people) than with ipi.  Ask him if he knows where there are PD1 seats open.

From experience I understand what you are going through right now.  You need to continue discussion with your docs until you are comfortable with your treatment decision!