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Anti pd1 working now seems the tumors are growing.
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Anti pd1 working now seems the tumors are growing.

› Forums › General Melanoma Community › Anti pd1 working now seems the tumors are growing.

  • Post
    • November 23, 2013 at 3:16 am
    Cgillett
    Participant

      Hi my name is Carol and my brother has stage IV metesatic melanoma with no skin lesion. The tumors have been very aggressive and are in the peritonium and lymph nods. He has been through bio chemo with il2 and then yervoy! Nothing was working . He is a nras not braf which has limited his treatment options.   He was blessed to be accepted into the Merck trial drug. The first 3 treatments were fantastic. Little side effects  and the aggressive tumor was shrinking rapidly.  He's voice was stronger every day his skin was back to normal no more flaking, he could sleep and eat.  Things looked so so promising. His fourth treatment was a week and a half ago and suddenly his voice was getting weak and he feeling bad again.  He's stomach is beginning to grow again and he is scared and very down.  It seemed so positive and now right before the holiday and 1 week from his scan we feel uncertain and slightly worried. Does anyone have any information or experience with the pd1 working so well then just seemingly stop working instantly? I would be gratful for any insight that I could share with  my brother and family.  For all of the warriors fighting this monster, you are my heros and my prayers are with you daily.  Your battle is not for the faint of heart and each day is a victory. 

      God Bless and In Jesus Name,

      Carol G.

      Sister Warrior

    Viewing 5 reply threads
    • Replies
        • November 23, 2013 at 3:13 pm
        POW
        Participant

          I, personallly, have not heard of anti-PD1 working one day and not working the next day. I suppose it could happen, but I have not heard of such a case. It is normal, however, for melanoma patients to have good spells and bad spells. It is common to feel poorly a few days after a treatment but then things start to get better again.

          I think that all you can do is try your best to maintain a positive mental attitude, enjoy spending time with your brother on the days he feels up to it, and wait for the next set of scans. I know how difficult this can be– we all just want to KNOW what is happening inside the body! But we can't.

          Please let us know how his next set of scans comes out. I will be praying for the both of you. 

          • November 23, 2013 at 3:13 pm
          POW
          Participant

            I, personallly, have not heard of anti-PD1 working one day and not working the next day. I suppose it could happen, but I have not heard of such a case. It is normal, however, for melanoma patients to have good spells and bad spells. It is common to feel poorly a few days after a treatment but then things start to get better again.

            I think that all you can do is try your best to maintain a positive mental attitude, enjoy spending time with your brother on the days he feels up to it, and wait for the next set of scans. I know how difficult this can be– we all just want to KNOW what is happening inside the body! But we can't.

            Please let us know how his next set of scans comes out. I will be praying for the both of you. 

            • November 23, 2013 at 3:13 pm
            POW
            Participant

              I, personallly, have not heard of anti-PD1 working one day and not working the next day. I suppose it could happen, but I have not heard of such a case. It is normal, however, for melanoma patients to have good spells and bad spells. It is common to feel poorly a few days after a treatment but then things start to get better again.

              I think that all you can do is try your best to maintain a positive mental attitude, enjoy spending time with your brother on the days he feels up to it, and wait for the next set of scans. I know how difficult this can be– we all just want to KNOW what is happening inside the body! But we can't.

              Please let us know how his next set of scans comes out. I will be praying for the both of you. 

              • November 24, 2013 at 1:38 am
              tasjacques
              Participant

                Hi Carol,

                I am sorry your brother is feeling down and not to good. My husband is in the PD1 trial and he has had good days and bad days. We knew the tumors were shrinking because he had one in the arm that was visible changing by the day. When scans time came around indeed they were a confirmation of the response.

                He gets fatigue quite easily, I guess is because they are battling a great battle that needs all their strength to win it. 

                I hope your brother is just having this down time because internally he is kikcking melanoma's buds!

                Nutrition is really important as you probably know by now.

                There was a time during the past couple of months that my husband got really weak and it was because his hematocrit levels were low 8.7, low enough for him to feel symptoms. 

                I pray that PD1 has not stop working for him. 

                Elenise

                  • November 25, 2013 at 4:23 am
                  Cgillett
                  Participant

                    Thank you for your response.  I pray this is still working.  Well know more after the scans. He's worried and praying with ceasing as are we.  Thank you again and the very best to you as well.  I will post any changes thanks again

                    In Faith,

                    Carol

                    sister warrior

                     

                    • November 25, 2013 at 4:23 am
                    Cgillett
                    Participant

                      Thank you for your response.  I pray this is still working.  Well know more after the scans. He's worried and praying with ceasing as are we.  Thank you again and the very best to you as well.  I will post any changes thanks again

                      In Faith,

                      Carol

                      sister warrior

                       

                      • November 25, 2013 at 4:23 am
                      Cgillett
                      Participant

                        Thank you for your response.  I pray this is still working.  Well know more after the scans. He's worried and praying with ceasing as are we.  Thank you again and the very best to you as well.  I will post any changes thanks again

                        In Faith,

                        Carol

                        sister warrior

                         

                      • November 24, 2013 at 1:38 am
                      tasjacques
                      Participant

                        Hi Carol,

                        I am sorry your brother is feeling down and not to good. My husband is in the PD1 trial and he has had good days and bad days. We knew the tumors were shrinking because he had one in the arm that was visible changing by the day. When scans time came around indeed they were a confirmation of the response.

                        He gets fatigue quite easily, I guess is because they are battling a great battle that needs all their strength to win it. 

                        I hope your brother is just having this down time because internally he is kikcking melanoma's buds!

                        Nutrition is really important as you probably know by now.

                        There was a time during the past couple of months that my husband got really weak and it was because his hematocrit levels were low 8.7, low enough for him to feel symptoms. 

                        I pray that PD1 has not stop working for him. 

                        Elenise

                        • November 24, 2013 at 1:38 am
                        tasjacques
                        Participant

                          Hi Carol,

                          I am sorry your brother is feeling down and not to good. My husband is in the PD1 trial and he has had good days and bad days. We knew the tumors were shrinking because he had one in the arm that was visible changing by the day. When scans time came around indeed they were a confirmation of the response.

                          He gets fatigue quite easily, I guess is because they are battling a great battle that needs all their strength to win it. 

                          I hope your brother is just having this down time because internally he is kikcking melanoma's buds!

                          Nutrition is really important as you probably know by now.

                          There was a time during the past couple of months that my husband got really weak and it was because his hematocrit levels were low 8.7, low enough for him to feel symptoms. 

                          I pray that PD1 has not stop working for him. 

                          Elenise

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