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Horrible Situation, Possible PD1 trial

Forums General Melanoma Community Horrible Situation, Possible PD1 trial

  • Post
    sjl
    Participant

      Hi – it's been awhile since I posted.  My husband's situation has very rapidly deteriorated in the last 3 weeks.  The tumors on his neck are huge, his face is distorted, he can't talk or swallow, one eye will not close and initial scans show that the melanoma is most likely now in the liver and lungs.  Further testing has not been done because it doesn't matter with the neck the way it is.  The tumors are pressing on the corotid artery and the jugular vein.  He is on oxygen and a feeding tube.  He's got blood clots in one lung.  Ca

      Hi – it's been awhile since I posted.  My husband's situation has very rapidly deteriorated in the last 3 weeks.  The tumors on his neck are huge, his face is distorted, he can't talk or swallow, one eye will not close and initial scans show that the melanoma is most likely now in the liver and lungs.  Further testing has not been done because it doesn't matter with the neck the way it is.  The tumors are pressing on the corotid artery and the jugular vein.  He is on oxygen and a feeding tube.  He's got blood clots in one lung.  Carbo/Taxol quit working, Yervoy failed, a round of Dacarbazine didn't seem to help and he just completed 5 rounds of radiation that seem to have slightly shrunk what we can see.  His situation is so bad that our local doctor didn't want to complete the radiation that was begun while he was hospitalized and under the care of his melanoma specialist two hours away form home.  He was rehospitalized to get the feeding tube under control and they wanted to complete the radiation so it was done.  Now they want to talk to us about a clinical PD1 trial.  What are your thoughts on this?  And who pays for it?  It would be done at the Hillman Cancer Center in Pittsburgh. I'm not sure if I've tracked down the correct trial or not but if I did it's a phase 1 trial.  He's cKit and BRAF negative, NRAS positive.  I want to go to the appointment as fully prepared as I can be so I can ask the right questions and have some idea of what to expect.

    Viewing 8 reply threads
    • Replies
        awillett1991
        Participant
          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

          awillett1991
          Participant
            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

            awillett1991
            Participant
              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

              NYKaren
              Participant
                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
                NYKaren
                Participant
                  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
                  NYKaren
                  Participant
                    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
                      NYKaren
                      Participant
                        Actually what I was told this past week was that it would be starting “in about 2 weeks.” Maybe I missed it–did you say when your appointment is?
                        Karen
                        NYKaren
                        Participant
                          Actually what I was told this past week was that it would be starting “in about 2 weeks.” Maybe I missed it–did you say when your appointment is?
                          Karen
                          NYKaren
                          Participant
                            Actually what I was told this past week was that it would be starting “in about 2 weeks.” Maybe I missed it–did you say when your appointment is?
                            Karen
                          Tamils
                          Participant

                            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.  

                             

                            Tamils
                            Participant

                              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.  

                               

                              Tamils
                              Participant

                                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.  

                                 

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