Horrible Situation, Possible PD1 trial

First let me say I am so very sorry to hear you are both going through this and he is suffering so much. I just started the Merck anti Pd1 trial, only had one infusion, but fatigue and a little cough is the worst of it so far. No idea if its working, but I didn’t feel like I had a lot of choices either and I was lucky to get in. Mine is a phase 2 trial.

You do have to check w insurance, they are billed anything that is a part of routine care, but the pharma company pays for the drug and any tests, etc specific only to the study. So it’s not free by any means.

Prayers for peace and healing.
Amy

First let me say I am so very sorry to hear you are both going through this and he is suffering so much. I just started the Merck anti Pd1 trial, only had one infusion, but fatigue and a little cough is the worst of it so far. No idea if its working, but I didn’t feel like I had a lot of choices either and I was lucky to get in. Mine is a phase 2 trial.

You do have to check w insurance, they are billed anything that is a part of routine care, but the pharma company pays for the drug and any tests, etc specific only to the study. So it’s not free by any means.

Prayers for peace and healing.
Amy

First let me say I am so very sorry to hear you are both going through this and he is suffering so much. I just started the Merck anti Pd1 trial, only had one infusion, but fatigue and a little cough is the worst of it so far. No idea if its working, but I didn’t feel like I had a lot of choices either and I was lucky to get in. Mine is a phase 2 trial.

You do have to check w insurance, they are billed anything that is a part of routine care, but the pharma company pays for the drug and any tests, etc specific only to the study. So it’s not free by any means.

Prayers for peace and healing.
Amy

I too am so sorry you’re both going through this. Do you know the name of the trial? If it’s the one I’m thinking of, (Merck) they’ve removed the chemo arm, so your husband would be guaranteed to get the drug, it’s just a matter of which strength. And I have heard that both strengths are effective.
This trial is of great interest to me… It should be starting (or I guess re- starting) in June at Sloan. Where would your husband go, and when could he start, if that’s what he decided to do.
I don’t know if this helps or not, but it’s good to have the info.
Karen

I too am so sorry you’re both going through this. Do you know the name of the trial? If it’s the one I’m thinking of, (Merck) they’ve removed the chemo arm, so your husband would be guaranteed to get the drug, it’s just a matter of which strength. And I have heard that both strengths are effective.
This trial is of great interest to me… It should be starting (or I guess re- starting) in June at Sloan. Where would your husband go, and when could he start, if that’s what he decided to do.
I don’t know if this helps or not, but it’s good to have the info.
Karen

I too am so sorry you’re both going through this. Do you know the name of the trial? If it’s the one I’m thinking of, (Merck) they’ve removed the chemo arm, so your husband would be guaranteed to get the drug, it’s just a matter of which strength. And I have heard that both strengths are effective.
This trial is of great interest to me… It should be starting (or I guess re- starting) in June at Sloan. Where would your husband go, and when could he start, if that’s what he decided to do.
I don’t know if this helps or not, but it’s good to have the info.
Karen

Merck just opened >1000 new slots in their Phase I trial of lambrolizumab, so maybe it's that one (NCT01295827)?  I see that it has a Pittsburgh location.  My father (c-KIT and BRAF negative) just signed the consent papers for this trial and we are hoping he passes the qualification tests (no brain mets, for example) and can get started.  It looks very promising, and the side effects are much more moderate than ipi.  For responders, anti-PD1 seems to start working within weeks, so if you can get your husband in quickly, it might relieve some of his tumor load.  For this particular trial, I do know that there is a 28 day waiting period between the last day of radiation and the first possible anti-PD1 infusion.

As far as who pays, once you sign the consent form, Merck will pay for the drug, its administration, study tests and necessary procedures associated with the study ("all screening procedures, ECGs, urine tests, and blood draws to monitor thyroid and immune function and for antibody, PK, and viral tests," as well as biopsy).  You pay for treating any side effects, all other cancer treatments, and so-called "standard of care."  My father is under the care of an HMO who is not the institution running the clinical trial.  The trial doctor warned us that procedures not covered by Merck, which include things as simple as the nurse weighing him and taking his temperature and blood pressure every visit, could really add up unless we get a referral from the HMO.  So we're working on that.  

My best wishes to you and your husband.  

 

Merck just opened >1000 new slots in their Phase I trial of lambrolizumab, so maybe it's that one (NCT01295827)?  I see that it has a Pittsburgh location.  My father (c-KIT and BRAF negative) just signed the consent papers for this trial and we are hoping he passes the qualification tests (no brain mets, for example) and can get started.  It looks very promising, and the side effects are much more moderate than ipi.  For responders, anti-PD1 seems to start working within weeks, so if you can get your husband in quickly, it might relieve some of his tumor load.  For this particular trial, I do know that there is a 28 day waiting period between the last day of radiation and the first possible anti-PD1 infusion.

As far as who pays, once you sign the consent form, Merck will pay for the drug, its administration, study tests and necessary procedures associated with the study ("all screening procedures, ECGs, urine tests, and blood draws to monitor thyroid and immune function and for antibody, PK, and viral tests," as well as biopsy).  You pay for treating any side effects, all other cancer treatments, and so-called "standard of care."  My father is under the care of an HMO who is not the institution running the clinical trial.  The trial doctor warned us that procedures not covered by Merck, which include things as simple as the nurse weighing him and taking his temperature and blood pressure every visit, could really add up unless we get a referral from the HMO.  So we're working on that.  

My best wishes to you and your husband.  

 

Merck just opened >1000 new slots in their Phase I trial of lambrolizumab, so maybe it's that one (NCT01295827)?  I see that it has a Pittsburgh location.  My father (c-KIT and BRAF negative) just signed the consent papers for this trial and we are hoping he passes the qualification tests (no brain mets, for example) and can get started.  It looks very promising, and the side effects are much more moderate than ipi.  For responders, anti-PD1 seems to start working within weeks, so if you can get your husband in quickly, it might relieve some of his tumor load.  For this particular trial, I do know that there is a 28 day waiting period between the last day of radiation and the first possible anti-PD1 infusion.

As far as who pays, once you sign the consent form, Merck will pay for the drug, its administration, study tests and necessary procedures associated with the study ("all screening procedures, ECGs, urine tests, and blood draws to monitor thyroid and immune function and for antibody, PK, and viral tests," as well as biopsy).  You pay for treating any side effects, all other cancer treatments, and so-called "standard of care."  My father is under the care of an HMO who is not the institution running the clinical trial.  The trial doctor warned us that procedures not covered by Merck, which include things as simple as the nurse weighing him and taking his temperature and blood pressure every visit, could really add up unless we get a referral from the HMO.  So we're working on that.  

My best wishes to you and your husband.