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Keytruda/Peg Interferon Trial

Forums General Melanoma Community Keytruda/Peg Interferon Trial

  • Post
    pookerpb
    Participant

      I am new to this forum and am the wife of a stage IV melanoma cancer patient. Husband was first in 2008 when husband was 37. He had a nodule (>4mm) removed from calf. lymph nodes tested negative. Was on interpheron for one year.

      in 2014 it came back in small intestine. Had resectioni done and on IPI/Interpheron trial for 8 mos until some of the lymph node markers progressed.

      Jan 2015 started the Keytruda/Peg Interpheron trial. Showed shrinkage with first 12 week scan, and then last week scans showed some stability with very minimal growth in others.

      Had to come off treatment due to Pneumonitis. On very hight dose prednisone for a few weeks and hopefully back into study in 6 weeks (will have missed 2 doses).

      We live in Northwestern PA and see Dr. Kirkwood in Pittsburgh who is a melanoma specialist. we have 2 daughters age 13 and 15.

      The unfortunate thing is that my husband has a concerete business which is very labor intensive. I dont know how he goes to work each day and I hate seeing him suffering from his job (very physical).

      Just wanted to say hello….

       

    Viewing 5 reply threads
    • Replies
        jamieth29
        Participant
          Just wanted to say I give your husband a lot of credit…I am a carpenter but my company has concrete crews that I help on sometimes also. It has to be physically exhausting. I am hoping I can get back at it soon. I’ve been off for 2.5 months from 3 different surgeries. In my mind people that do hard physical labor every day are a different breed and some of the mentally strongest and most stubborn people…in a good way

          Good luck with everything.

          jamieth29
          Participant
            Just wanted to say I give your husband a lot of credit…I am a carpenter but my company has concrete crews that I help on sometimes also. It has to be physically exhausting. I am hoping I can get back at it soon. I’ve been off for 2.5 months from 3 different surgeries. In my mind people that do hard physical labor every day are a different breed and some of the mentally strongest and most stubborn people…in a good way

            Good luck with everything.

              pookerpb
              Participant

                Yes…I agree. I work full time and always have, but unfortuneatly I carry the benefits and dont earn enough to support us all. I wish every day he felt like could stay at home and not feel like he has to try. Its hard when you look at what SSDI actually gives families to live on. I thank God for him every day and hope that he/we get throught this time as best we can. At least he doesnt have to work in the winters here so that has been his surgery, etc, recoup time.

                Good luck to you as well.

                 

                pookerpb
                Participant

                  I so wish that was the case with my husband. He would like to not work but feels like he has to. Although I work FT and have benefits,his income has always been the bread winner and without his income we would sturggle greatly. We have young teen girls and a house payment and will have to really change our lifestle, maybe sell our house or whatever we need to do. I have told him I could get a second job in the evening and weekeds but he wont consider it. I am the one who runs our children everywhere (they are both active in sports) and he feels I would be taking too much away from them and wants them to continue on with their lives as normal as we can make it for them.

                  pookerpb
                  Participant

                    I so wish that was the case with my husband. He would like to not work but feels like he has to. Although I work FT and have benefits,his income has always been the bread winner and without his income we would sturggle greatly. We have young teen girls and a house payment and will have to really change our lifestle, maybe sell our house or whatever we need to do. I have told him I could get a second job in the evening and weekeds but he wont consider it. I am the one who runs our children everywhere (they are both active in sports) and he feels I would be taking too much away from them and wants them to continue on with their lives as normal as we can make it for them.

                    pookerpb
                    Participant

                      I so wish that was the case with my husband. He would like to not work but feels like he has to. Although I work FT and have benefits,his income has always been the bread winner and without his income we would sturggle greatly. We have young teen girls and a house payment and will have to really change our lifestle, maybe sell our house or whatever we need to do. I have told him I could get a second job in the evening and weekeds but he wont consider it. I am the one who runs our children everywhere (they are both active in sports) and he feels I would be taking too much away from them and wants them to continue on with their lives as normal as we can make it for them.

                      pookerpb
                      Participant

                        Yes…I agree. I work full time and always have, but unfortuneatly I carry the benefits and dont earn enough to support us all. I wish every day he felt like could stay at home and not feel like he has to try. Its hard when you look at what SSDI actually gives families to live on. I thank God for him every day and hope that he/we get throught this time as best we can. At least he doesnt have to work in the winters here so that has been his surgery, etc, recoup time.

                        Good luck to you as well.

                         

                        pookerpb
                        Participant

                          Yes…I agree. I work full time and always have, but unfortuneatly I carry the benefits and dont earn enough to support us all. I wish every day he felt like could stay at home and not feel like he has to try. Its hard when you look at what SSDI actually gives families to live on. I thank God for him every day and hope that he/we get throught this time as best we can. At least he doesnt have to work in the winters here so that has been his surgery, etc, recoup time.

                          Good luck to you as well.

                           

                        jamieth29
                        Participant
                          Just wanted to say I give your husband a lot of credit…I am a carpenter but my company has concrete crews that I help on sometimes also. It has to be physically exhausting. I am hoping I can get back at it soon. I’ve been off for 2.5 months from 3 different surgeries. In my mind people that do hard physical labor every day are a different breed and some of the mentally strongest and most stubborn people…in a good way

                          Good luck with everything.

                          Mom2Addy
                          Participant

                            My husband is stage iv and owns his own home improvement business. He often does his own labor and I felt very much like you do. What I found out (after finally talking to him about it) is that this is his way of feeling 'normal'. We are fortunate and he doesn't have to work, he wants to. This may be true for your husband as well. Just something to consider. Sending your family prayers and all the best. 

                              jpg
                              Participant

                                the peg interferon is the toxic thing and if he wants to regain his strength, he should opt out of the trial and just be on the Keytruda.  Interferon which is always been promoted by Kirkwood is not being prescribed at the big melanoma centers at all.  It isn't proven to increase overall survival but is very toxic.  You can leave a trial anytime and he should.  But he can be on the Keytruda still which is great new therapy.

                                pookerpb
                                Participant

                                  I soooo agree. We have gone round and round with the peg. He was on the highest gose in the beginning of the trial and told them to reduce to next level down or he was done with trial. They dose reduced and wanted him to give it a try. At this point we dont know what is giving him the worst symptoms…the keytruda or the peg. His biggest complaint is the arthritis like pain in join t he feels and I think that is a keytruda symptom. Never had that on the interpheron the last time. And you are right. Kirkwood promotes the peg in all the trials with both the ipi and keytruda. We are going to see how nextt scans look and may get out of the trial. We spend the most terrible winter in PA traveling 3 hours to pitt every other week and we felt like we risked our lives for treatment each time we went. If he got out of the trial, he could have the keytruda her in our hometown at the cancer center. Tougth decisions.

                                  pookerpb
                                  Participant

                                    I soooo agree. We have gone round and round with the peg. He was on the highest gose in the beginning of the trial and told them to reduce to next level down or he was done with trial. They dose reduced and wanted him to give it a try. At this point we dont know what is giving him the worst symptoms…the keytruda or the peg. His biggest complaint is the arthritis like pain in join t he feels and I think that is a keytruda symptom. Never had that on the interpheron the last time. And you are right. Kirkwood promotes the peg in all the trials with both the ipi and keytruda. We are going to see how nextt scans look and may get out of the trial. We spend the most terrible winter in PA traveling 3 hours to pitt every other week and we felt like we risked our lives for treatment each time we went. If he got out of the trial, he could have the keytruda her in our hometown at the cancer center. Tougth decisions.

                                    pookerpb
                                    Participant

                                      I soooo agree. We have gone round and round with the peg. He was on the highest gose in the beginning of the trial and told them to reduce to next level down or he was done with trial. They dose reduced and wanted him to give it a try. At this point we dont know what is giving him the worst symptoms…the keytruda or the peg. His biggest complaint is the arthritis like pain in join t he feels and I think that is a keytruda symptom. Never had that on the interpheron the last time. And you are right. Kirkwood promotes the peg in all the trials with both the ipi and keytruda. We are going to see how nextt scans look and may get out of the trial. We spend the most terrible winter in PA traveling 3 hours to pitt every other week and we felt like we risked our lives for treatment each time we went. If he got out of the trial, he could have the keytruda her in our hometown at the cancer center. Tougth decisions.

                                      pookerpb
                                      Participant

                                        Can you tell more about what you may know that some of the larger melanoma centers are promoting for combo treatments? I hate the interpheron, but my husband fees the keytruda is not enough and there is some kind of combo treatment out there that is the ticket.

                                        pookerpb
                                        Participant

                                          Can you tell more about what you may know that some of the larger melanoma centers are promoting for combo treatments? I hate the interpheron, but my husband fees the keytruda is not enough and there is some kind of combo treatment out there that is the ticket.

                                          jpg
                                          Participant

                                            Keytruda works better alone than a bunch of other drugs. some are mixing it with the BRAF drug.  Look on Clinicaltrials.gov  but interferon does not work.

                                            jpg
                                            Participant

                                              Keytruda works better alone than a bunch of other drugs. some are mixing it with the BRAF drug.  Look on Clinicaltrials.gov  but interferon does not work.

                                              jpg
                                              Participant

                                                Keytruda works better alone than a bunch of other drugs. some are mixing it with the BRAF drug.  Look on Clinicaltrials.gov  but interferon does not work.

                                                pookerpb
                                                Participant

                                                  Can you tell more about what you may know that some of the larger melanoma centers are promoting for combo treatments? I hate the interpheron, but my husband fees the keytruda is not enough and there is some kind of combo treatment out there that is the ticket.

                                                  jpg
                                                  Participant

                                                    the peg interferon is the toxic thing and if he wants to regain his strength, he should opt out of the trial and just be on the Keytruda.  Interferon which is always been promoted by Kirkwood is not being prescribed at the big melanoma centers at all.  It isn't proven to increase overall survival but is very toxic.  You can leave a trial anytime and he should.  But he can be on the Keytruda still which is great new therapy.

                                                    jpg
                                                    Participant

                                                      the peg interferon is the toxic thing and if he wants to regain his strength, he should opt out of the trial and just be on the Keytruda.  Interferon which is always been promoted by Kirkwood is not being prescribed at the big melanoma centers at all.  It isn't proven to increase overall survival but is very toxic.  You can leave a trial anytime and he should.  But he can be on the Keytruda still which is great new therapy.

                                                    Mom2Addy
                                                    Participant

                                                      My husband is stage iv and owns his own home improvement business. He often does his own labor and I felt very much like you do. What I found out (after finally talking to him about it) is that this is his way of feeling 'normal'. We are fortunate and he doesn't have to work, he wants to. This may be true for your husband as well. Just something to consider. Sending your family prayers and all the best. 

                                                      Mom2Addy
                                                      Participant

                                                        My husband is stage iv and owns his own home improvement business. He often does his own labor and I felt very much like you do. What I found out (after finally talking to him about it) is that this is his way of feeling 'normal'. We are fortunate and he doesn't have to work, he wants to. This may be true for your husband as well. Just something to consider. Sending your family prayers and all the best. 

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