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So hard to remain hopeful-Yervoy
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So hard to remain hopeful-Yervoy

› Forums › General Melanoma Community › So hard to remain hopeful-Yervoy

  • Post
    • October 27, 2011 at 7:20 pm
    cwu
    Participant

      My father is going to get his third dose of Yervoy next Monday and so far it is so hard to remain hopeful this will work for him.  He has had side effects, some diarrhea, rash, chills, and major itchiness.  One of the reasons that it is so hard to maintain hope is because his lesions are cuteaneous, they are on his skin and we can see them.  Since starting Yervoy, he had a couple of lesions have dried up and fallen off but so far, they seem to multiply and get bigger every day.  They are also starting to move up his upper thigh area.  His leg is imfla

      My father is going to get his third dose of Yervoy next Monday and so far it is so hard to remain hopeful this will work for him.  He has had side effects, some diarrhea, rash, chills, and major itchiness.  One of the reasons that it is so hard to maintain hope is because his lesions are cuteaneous, they are on his skin and we can see them.  Since starting Yervoy, he had a couple of lesions have dried up and fallen off but so far, they seem to multiply and get bigger every day.  They are also starting to move up his upper thigh area.  His leg is imflammed and swollen.  His oncologist warned us that while on the med, his lesions could get worse before they get better but it is so hard to have hope when all we see are lesions getting worse. My father gets depressed because he sees them getting worse.  Sometimes, I wish they were internal instead so we dont see them until the scans.  I try to focus on his ALC #s to keep my hopes up since they have gone from 1.58 to 1.98 after his first dose. I also read and re-read Vermont Donna's postings when I am down since she had cuteaneous lesions and is a complete responder.   

      Chau

    Viewing 8 reply threads
    • Replies
        • October 27, 2011 at 8:12 pm
        jim Breitfeller
        Participant

          Chau,

          Your father may be a responder. The cuteaneous tumors may look bigger because of the CD8+ T-cells (TILs) infiltrating the tumors. Be hopeful and wait for the scans. The Inflammation of the leg is a good sign that an Immune response is in progress.

           

          Third dose on Monday = day 42

          http://2.bp.blogspot.com/-YDR0RJlQYxQ/Tqm4hADeHOI/AAAAAAAAAkI/AYxLWkfoZAQ/s1600/Yervoy%2B2011.jpg

           

          http://2.bp.blogspot.com/-ms06eeyU9l4/Tqm6rYpJbdI/AAAAAAAAAkU/F-bNlKOYe_4/s1600/ALC%2B2011.jpg

           

          http://4.bp.blogspot.com/-lNP7L1zmnzA/Tqm7d2DNHtI/AAAAAAAAAkg/JMSo7ASqZGg/s1600/T-cell%2Bactivation%2Bby%2BIpi%2B2011.jpg

          I wish you father all the best

           

          Jimmy B

            • October 27, 2011 at 9:25 pm
            Vermont_Donna
            Participant

              Hi Chau,

               DONT GIVE UP HOPE! I was in a clinical trial and my oncologist said that new lesions were "acceptable" til the 12th week and that was the 4th dose…and I did get new lesions for a while but then I did see that one flaked off and the others reabsorbed…and rather quickly…..so you are just going into the 3rd dose……I would say DONT DESPAIR! Give the medication time…like Jimmy B pointed out too……I am NED almost 9 months later!

              Vermont_Donna, stage 3a, NED…due to IPI

              • October 27, 2011 at 10:34 pm
              cwu
              Participant

                Hi Donna,

                Thank you for responding.  It is so good to hear from you and your story gives me alot of hope for him.  Logically, I know it takes time for Yervoy to work but it is so hard to reconcile that to the reality that his leg is covered with lesions and they seem to grow more and bigger each day. He also had some problems with some of them breaking and bleeding because they get very dry but his doctor said it is expected and is too not concerned.  I hope that he will have a complete respond like you. Thanks again and I hope you are NED for many years to come.

                Chau

                • October 27, 2011 at 10:34 pm
                cwu
                Participant

                  Hi Donna,

                  Thank you for responding.  It is so good to hear from you and your story gives me alot of hope for him.  Logically, I know it takes time for Yervoy to work but it is so hard to reconcile that to the reality that his leg is covered with lesions and they seem to grow more and bigger each day. He also had some problems with some of them breaking and bleeding because they get very dry but his doctor said it is expected and is too not concerned.  I hope that he will have a complete respond like you. Thanks again and I hope you are NED for many years to come.

                  Chau

                  • October 27, 2011 at 10:34 pm
                  cwu
                  Participant

                    Hi Donna,

                    Thank you for responding.  It is so good to hear from you and your story gives me alot of hope for him.  Logically, I know it takes time for Yervoy to work but it is so hard to reconcile that to the reality that his leg is covered with lesions and they seem to grow more and bigger each day. He also had some problems with some of them breaking and bleeding because they get very dry but his doctor said it is expected and is too not concerned.  I hope that he will have a complete respond like you. Thanks again and I hope you are NED for many years to come.

                    Chau

                    • October 27, 2011 at 9:25 pm
                    Vermont_Donna
                    Participant

                      Hi Chau,

                       DONT GIVE UP HOPE! I was in a clinical trial and my oncologist said that new lesions were "acceptable" til the 12th week and that was the 4th dose…and I did get new lesions for a while but then I did see that one flaked off and the others reabsorbed…and rather quickly…..so you are just going into the 3rd dose……I would say DONT DESPAIR! Give the medication time…like Jimmy B pointed out too……I am NED almost 9 months later!

                      Vermont_Donna, stage 3a, NED…due to IPI

                      • October 27, 2011 at 9:25 pm
                      Vermont_Donna
                      Participant

                        Hi Chau,

                         DONT GIVE UP HOPE! I was in a clinical trial and my oncologist said that new lesions were "acceptable" til the 12th week and that was the 4th dose…and I did get new lesions for a while but then I did see that one flaked off and the others reabsorbed…and rather quickly…..so you are just going into the 3rd dose……I would say DONT DESPAIR! Give the medication time…like Jimmy B pointed out too……I am NED almost 9 months later!

                        Vermont_Donna, stage 3a, NED…due to IPI

                        • October 27, 2011 at 10:09 pm
                        cwu
                        Participant

                          Hi Jimmy B,

                          Thank you for responding.  I hope my dad will respond like the man in the pictures you included, that would be wonderful. In your ALC graph, it appears that some of the ALC #s are very low, below 1.0. It seems like my father is starting with good ALC # at 1.58 prior to starting Yervoy, does it mean that his immune system is fairly good to start?

                          Chau

                          • October 28, 2011 at 11:09 am
                          jim Breitfeller
                          Participant

                            Chau,

                            Since we don't know what your Father's ALC was before melanoma, there is no way of telling if his immune system was trying to fight the melanoma before Yervoy therapy. The positive is that it is increasing, which means ther are more T-cells in circulation which can be activated. The more the better is the thought.

                             

                            Please keep us informed

                            Best regards,

                            Jimmy B

                            • October 29, 2011 at 1:59 pm
                            cwu
                            Participant
                              Jimmy B,
                              I don’t have his ALC number prior to treatment. He will get blood work done on Monday before the infusion so hopefully it goes up again. BTW, thanks for all your info., especially the picture of Yervoy beating mm, where do you get all this info.? My dad doesn’t speak or read English so sometimes it is hard to explain treatment plans, how Yervoy works and its potential. I showed him that picture and it really made him feel better and less depressed. So a big thank you for that.

                              Chau

                              • October 29, 2011 at 1:59 pm
                              cwu
                              Participant
                                Jimmy B,
                                I don’t have his ALC number prior to treatment. He will get blood work done on Monday before the infusion so hopefully it goes up again. BTW, thanks for all your info., especially the picture of Yervoy beating mm, where do you get all this info.? My dad doesn’t speak or read English so sometimes it is hard to explain treatment plans, how Yervoy works and its potential. I showed him that picture and it really made him feel better and less depressed. So a big thank you for that.

                                Chau

                                • October 29, 2011 at 1:59 pm
                                cwu
                                Participant
                                  Jimmy B,
                                  I don’t have his ALC number prior to treatment. He will get blood work done on Monday before the infusion so hopefully it goes up again. BTW, thanks for all your info., especially the picture of Yervoy beating mm, where do you get all this info.? My dad doesn’t speak or read English so sometimes it is hard to explain treatment plans, how Yervoy works and its potential. I showed him that picture and it really made him feel better and less depressed. So a big thank you for that.

                                  Chau

                                  • October 29, 2011 at 3:24 pm
                                  jim Breitfeller
                                  Participant

                                    Chau,

                                    The picture came from Bristol Myer website a couple of years back from their confrence calls to investors.

                                    I do have a website called Melanoma Missionary that is translatable in different languages. It had been googled from a 141 different countries and at least a thousand different universites, colleges, Biotechs and Big Pharma. Just go to the " VIEW MY STATS"  3/4 of the way down the right side of the Blog.

                                    I wish you and your father well

                                     

                                    Jimmy  B

                                    • November 1, 2011 at 12:02 am
                                    cwu
                                    Participant
                                      Thanks Jimmy B. I will check out your website.
                                      • November 1, 2011 at 12:02 am
                                      cwu
                                      Participant
                                        Thanks Jimmy B. I will check out your website.
                                        • November 1, 2011 at 12:02 am
                                        cwu
                                        Participant
                                          Thanks Jimmy B. I will check out your website.
                                          • October 29, 2011 at 3:24 pm
                                          jim Breitfeller
                                          Participant

                                            Chau,

                                            The picture came from Bristol Myer website a couple of years back from their confrence calls to investors.

                                            I do have a website called Melanoma Missionary that is translatable in different languages. It had been googled from a 141 different countries and at least a thousand different universites, colleges, Biotechs and Big Pharma. Just go to the " VIEW MY STATS"  3/4 of the way down the right side of the Blog.

                                            I wish you and your father well

                                             

                                            Jimmy  B

                                            • October 29, 2011 at 3:24 pm
                                            jim Breitfeller
                                            Participant

                                              Chau,

                                              The picture came from Bristol Myer website a couple of years back from their confrence calls to investors.

                                              I do have a website called Melanoma Missionary that is translatable in different languages. It had been googled from a 141 different countries and at least a thousand different universites, colleges, Biotechs and Big Pharma. Just go to the " VIEW MY STATS"  3/4 of the way down the right side of the Blog.

                                              I wish you and your father well

                                               

                                              Jimmy  B

                                              • October 28, 2011 at 11:09 am
                                              jim Breitfeller
                                              Participant

                                                Chau,

                                                Since we don't know what your Father's ALC was before melanoma, there is no way of telling if his immune system was trying to fight the melanoma before Yervoy therapy. The positive is that it is increasing, which means ther are more T-cells in circulation which can be activated. The more the better is the thought.

                                                 

                                                Please keep us informed

                                                Best regards,

                                                Jimmy B

                                                • October 28, 2011 at 11:09 am
                                                jim Breitfeller
                                                Participant

                                                  Chau,

                                                  Since we don't know what your Father's ALC was before melanoma, there is no way of telling if his immune system was trying to fight the melanoma before Yervoy therapy. The positive is that it is increasing, which means ther are more T-cells in circulation which can be activated. The more the better is the thought.

                                                   

                                                  Please keep us informed

                                                  Best regards,

                                                  Jimmy B

                                                  • October 27, 2011 at 10:09 pm
                                                  cwu
                                                  Participant

                                                    Hi Jimmy B,

                                                    Thank you for responding.  I hope my dad will respond like the man in the pictures you included, that would be wonderful. In your ALC graph, it appears that some of the ALC #s are very low, below 1.0. It seems like my father is starting with good ALC # at 1.58 prior to starting Yervoy, does it mean that his immune system is fairly good to start?

                                                    Chau

                                                    • October 27, 2011 at 10:09 pm
                                                    cwu
                                                    Participant

                                                      Hi Jimmy B,

                                                      Thank you for responding.  I hope my dad will respond like the man in the pictures you included, that would be wonderful. In your ALC graph, it appears that some of the ALC #s are very low, below 1.0. It seems like my father is starting with good ALC # at 1.58 prior to starting Yervoy, does it mean that his immune system is fairly good to start?

                                                      Chau

                                                    • October 27, 2011 at 8:12 pm
                                                    jim Breitfeller
                                                    Participant

                                                      Chau,

                                                      Your father may be a responder. The cuteaneous tumors may look bigger because of the CD8+ T-cells (TILs) infiltrating the tumors. Be hopeful and wait for the scans. The Inflammation of the leg is a good sign that an Immune response is in progress.

                                                       

                                                      Third dose on Monday = day 42

                                                      http://2.bp.blogspot.com/-YDR0RJlQYxQ/Tqm4hADeHOI/AAAAAAAAAkI/AYxLWkfoZAQ/s1600/Yervoy%2B2011.jpg

                                                       

                                                      http://2.bp.blogspot.com/-ms06eeyU9l4/Tqm6rYpJbdI/AAAAAAAAAkU/F-bNlKOYe_4/s1600/ALC%2B2011.jpg

                                                       

                                                      http://4.bp.blogspot.com/-lNP7L1zmnzA/Tqm7d2DNHtI/AAAAAAAAAkg/JMSo7ASqZGg/s1600/T-cell%2Bactivation%2Bby%2BIpi%2B2011.jpg

                                                      I wish you father all the best

                                                       

                                                      Jimmy B

                                                      • October 27, 2011 at 8:12 pm
                                                      jim Breitfeller
                                                      Participant

                                                        Chau,

                                                        Your father may be a responder. The cuteaneous tumors may look bigger because of the CD8+ T-cells (TILs) infiltrating the tumors. Be hopeful and wait for the scans. The Inflammation of the leg is a good sign that an Immune response is in progress.

                                                         

                                                        Third dose on Monday = day 42

                                                        http://2.bp.blogspot.com/-YDR0RJlQYxQ/Tqm4hADeHOI/AAAAAAAAAkI/AYxLWkfoZAQ/s1600/Yervoy%2B2011.jpg

                                                         

                                                        http://2.bp.blogspot.com/-ms06eeyU9l4/Tqm6rYpJbdI/AAAAAAAAAkU/F-bNlKOYe_4/s1600/ALC%2B2011.jpg

                                                         

                                                        http://4.bp.blogspot.com/-lNP7L1zmnzA/Tqm7d2DNHtI/AAAAAAAAAkg/JMSo7ASqZGg/s1600/T-cell%2Bactivation%2Bby%2BIpi%2B2011.jpg

                                                        I wish you father all the best

                                                         

                                                        Jimmy B

                                                        • October 28, 2011 at 3:15 am
                                                        Gene_S
                                                        Participant

                                                          Hello Chau,

                                                          Since your father's melanoma is external, I would suggest that a proper food diet may help him!!!

                                                          In the movie "Dirt" they actually show that external melanoma can be cured by eating wisely!

                                                          See if you can obtain a copy of the movie or send me your address and I will mail you my copy

                                                          of the movie.  Send me an email at [email protected]  for some other thoughts, please

                                                          put melanoma in the subject.

                                                          Best Wishes,

                                                          Gene

                                                           

                                                           

                                                           

                                                           

                                                           

                                                           

                                                           

                                                           

                                                           

                                                           

                                                           

                                                           

                                                           

                                                           

                                                           

                                                           

                                                           

                                                           

                                                            • November 1, 2011 at 12:08 am
                                                            cwu
                                                            Participant
                                                              Gene,

                                                              Thanks, I have Netflix so I will see if they have it and check it out. I think dad has a fairly good diet, he eats lots of veggies and fruits and is cutting down on his red meat.
                                                              Thanks, Chau

                                                              • November 1, 2011 at 12:08 am
                                                              cwu
                                                              Participant
                                                                Gene,

                                                                Thanks, I have Netflix so I will see if they have it and check it out. I think dad has a fairly good diet, he eats lots of veggies and fruits and is cutting down on his red meat.
                                                                Thanks, Chau

                                                                • November 1, 2011 at 12:08 am
                                                                cwu
                                                                Participant
                                                                  Gene,

                                                                  Thanks, I have Netflix so I will see if they have it and check it out. I think dad has a fairly good diet, he eats lots of veggies and fruits and is cutting down on his red meat.
                                                                  Thanks, Chau

                                                                • October 28, 2011 at 3:15 am
                                                                Gene_S
                                                                Participant

                                                                  Hello Chau,

                                                                  Since your father's melanoma is external, I would suggest that a proper food diet may help him!!!

                                                                  In the movie "Dirt" they actually show that external melanoma can be cured by eating wisely!

                                                                  See if you can obtain a copy of the movie or send me your address and I will mail you my copy

                                                                  of the movie.  Send me an email at [email protected]  for some other thoughts, please

                                                                  put melanoma in the subject.

                                                                  Best Wishes,

                                                                  Gene

                                                                   

                                                                   

                                                                   

                                                                   

                                                                   

                                                                   

                                                                   

                                                                   

                                                                   

                                                                   

                                                                   

                                                                   

                                                                   

                                                                   

                                                                   

                                                                   

                                                                   

                                                                   

                                                                  • October 28, 2011 at 3:15 am
                                                                  Gene_S
                                                                  Participant

                                                                    Hello Chau,

                                                                    Since your father's melanoma is external, I would suggest that a proper food diet may help him!!!

                                                                    In the movie "Dirt" they actually show that external melanoma can be cured by eating wisely!

                                                                    See if you can obtain a copy of the movie or send me your address and I will mail you my copy

                                                                    of the movie.  Send me an email at [email protected]  for some other thoughts, please

                                                                    put melanoma in the subject.

                                                                    Best Wishes,

                                                                    Gene

                                                                     

                                                                     

                                                                     

                                                                     

                                                                     

                                                                     

                                                                     

                                                                     

                                                                     

                                                                     

                                                                     

                                                                     

                                                                     

                                                                     

                                                                     

                                                                     

                                                                     

                                                                     

                                                                    • October 30, 2011 at 2:57 am
                                                                    BethA
                                                                    Participant

                                                                      There is still reason to remain hopeful.  He could get better soon and this will just be a really bad memory.  I pray that his response is good and that he will soon be NED.   It does happen.  Good luck and know you are not alone.  Prayers to you and your dad.  Beth 3/B  

                                                                        • November 1, 2011 at 12:05 am
                                                                        cwu
                                                                        Participant
                                                                          Thanks Beth. I hope you will continue to be NED for a long long time.
                                                                          • November 1, 2011 at 12:05 am
                                                                          cwu
                                                                          Participant
                                                                            Thanks Beth. I hope you will continue to be NED for a long long time.
                                                                            • November 1, 2011 at 12:05 am
                                                                            cwu
                                                                            Participant
                                                                              Thanks Beth. I hope you will continue to be NED for a long long time.
                                                                            • October 30, 2011 at 2:57 am
                                                                            BethA
                                                                            Participant

                                                                              There is still reason to remain hopeful.  He could get better soon and this will just be a really bad memory.  I pray that his response is good and that he will soon be NED.   It does happen.  Good luck and know you are not alone.  Prayers to you and your dad.  Beth 3/B  

                                                                              • October 30, 2011 at 2:57 am
                                                                              BethA
                                                                              Participant

                                                                                There is still reason to remain hopeful.  He could get better soon and this will just be a really bad memory.  I pray that his response is good and that he will soon be NED.   It does happen.  Good luck and know you are not alone.  Prayers to you and your dad.  Beth 3/B  

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