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Update on my dad

Forums General Melanoma Community Update on my dad

  • Post
    deardad
    Participant

      So that was a downer again! The Temador for two months has done nothing. The WBR also has done nothing. One lesion is causing weakness in his foot and they're not offering anything other than cortisone for it. What's been offered? Well Carbo/Taxol or Fortismusine, both he did not recommend and personally would not take vs quality of life. So we don't know if there are any new lesions but I'm going to get the MRI disk to see whether gamma knife is an option, he said it wasn't. He also said that we need to get palliative care involved for down the track.

      So that was a downer again! The Temador for two months has done nothing. The WBR also has done nothing. One lesion is causing weakness in his foot and they're not offering anything other than cortisone for it. What's been offered? Well Carbo/Taxol or Fortismusine, both he did not recommend and personally would not take vs quality of life. So we don't know if there are any new lesions but I'm going to get the MRI disk to see whether gamma knife is an option, he said it wasn't. He also said that we need to get palliative care involved for down the track.

      What do we do now, just sit and wait for the bomb to go off? The onc said we can go out fighting with chemo or have quality? 

      Its all too much, please what do you think warriors, I need some info quick.

      Nahmi from Melbourne

    Viewing 8 reply threads
    • Replies
        FormerCaregiver
        Participant

          Nahmi, I am really sorry to read this. I don't have any medical info for you, but would like to say that I have some idea of how you might be feeling at the moment.

          I remember being in a similar situation in 2009 when my late wife was struggling with liver mets. Unfortunately, she passed away a few months later while participating in a clinical trial of P276-00 (a cyclin-dependent inhibitor). Although this experimental drug did little to prolong her life, I still feel that she made the right choice in fighting melanoma until the very end.

          Take care

          Frank from Australia

          FormerCaregiver
          Participant

            Nahmi, I am really sorry to read this. I don't have any medical info for you, but would like to say that I have some idea of how you might be feeling at the moment.

            I remember being in a similar situation in 2009 when my late wife was struggling with liver mets. Unfortunately, she passed away a few months later while participating in a clinical trial of P276-00 (a cyclin-dependent inhibitor). Although this experimental drug did little to prolong her life, I still feel that she made the right choice in fighting melanoma until the very end.

            Take care

            Frank from Australia

              deardad
              Participant

                Im sorry Frank, you have been through so much, I can't imagine loosing my husband let alone to such a nasty cancer. I wish there was a clinical trial available to my dad but they're only offering chemo. I don't think he wants to spend the time left knowing that only 10% respond to chemo. If it were me I think I would fight, but that's not my decision at the end of the day. The oncologist did not give us scan results other than telling us WBR and temador did not work, my dad did not ask anymore questions and wasn't game to ask in front of them. I am going to investigate gamma knife and for the moment and do a bit more research on carbo/taxol.

                Thanks for your thoughts.

                Nahmi from Melbourne

                 

                deardad
                Participant

                  Im sorry Frank, you have been through so much, I can't imagine loosing my husband let alone to such a nasty cancer. I wish there was a clinical trial available to my dad but they're only offering chemo. I don't think he wants to spend the time left knowing that only 10% respond to chemo. If it were me I think I would fight, but that's not my decision at the end of the day. The oncologist did not give us scan results other than telling us WBR and temador did not work, my dad did not ask anymore questions and wasn't game to ask in front of them. I am going to investigate gamma knife and for the moment and do a bit more research on carbo/taxol.

                  Thanks for your thoughts.

                  Nahmi from Melbourne

                   

                  deardad
                  Participant

                    Im sorry Frank, you have been through so much, I can't imagine loosing my husband let alone to such a nasty cancer. I wish there was a clinical trial available to my dad but they're only offering chemo. I don't think he wants to spend the time left knowing that only 10% respond to chemo. If it were me I think I would fight, but that's not my decision at the end of the day. The oncologist did not give us scan results other than telling us WBR and temador did not work, my dad did not ask anymore questions and wasn't game to ask in front of them. I am going to investigate gamma knife and for the moment and do a bit more research on carbo/taxol.

                    Thanks for your thoughts.

                    Nahmi from Melbourne

                     

                  FormerCaregiver
                  Participant

                    Nahmi, I am really sorry to read this. I don't have any medical info for you, but would like to say that I have some idea of how you might be feeling at the moment.

                    I remember being in a similar situation in 2009 when my late wife was struggling with liver mets. Unfortunately, she passed away a few months later while participating in a clinical trial of P276-00 (a cyclin-dependent inhibitor). Although this experimental drug did little to prolong her life, I still feel that she made the right choice in fighting melanoma until the very end.

                    Take care

                    Frank from Australia

                    MeNDave
                    Participant

                      Hi Nahmi,

                      I'm so sorry that you are at these crossroads.  I can give you some input on the Carbo/Taxol – Dave received his first dose in April.  He did 3 rounds before we found out (last Thursday) that it was no longer working.  I can tell you that his quality of life while on the Chemo has been good (where prior to treatment, it wasn't).  We went camping, he stood up as best man in a wedding, life as usual.  When he started not feeling well, we knew it was due to the cancer, and not the chemo.  Dave is still fighting – he starts IPI on Thursday. 

                      I would strongly suggest that you get the pain/palliative people in place now.  I think anybody fighting a stage IV diagnosis would benefit from it.  We got in touch with them back in April, and they have been wonderful.  They can help with the pain/quality of life issues, and from a caregiver aspect, a lot of support for you. 

                      It's not an easy decision, and in the end, it really has to be his.  And please remember to take time for yourself.  I know it's easier said than done, but so important.

                      I'll be keeping you in my thoughts and prayers,

                      Maria

                      MeNDave
                      Participant

                        Hi Nahmi,

                        I'm so sorry that you are at these crossroads.  I can give you some input on the Carbo/Taxol – Dave received his first dose in April.  He did 3 rounds before we found out (last Thursday) that it was no longer working.  I can tell you that his quality of life while on the Chemo has been good (where prior to treatment, it wasn't).  We went camping, he stood up as best man in a wedding, life as usual.  When he started not feeling well, we knew it was due to the cancer, and not the chemo.  Dave is still fighting – he starts IPI on Thursday. 

                        I would strongly suggest that you get the pain/palliative people in place now.  I think anybody fighting a stage IV diagnosis would benefit from it.  We got in touch with them back in April, and they have been wonderful.  They can help with the pain/quality of life issues, and from a caregiver aspect, a lot of support for you. 

                        It's not an easy decision, and in the end, it really has to be his.  And please remember to take time for yourself.  I know it's easier said than done, but so important.

                        I'll be keeping you in my thoughts and prayers,

                        Maria

                          deardad
                          Participant

                            Maria I'm sorry to hear that the chemo has stopped working on Dave. My dad fortunately has had a good quality of life in this journey so far. Really the only thing that really knocked him around was the WBR and temador (for a week). I know that my dad has already made the decision not to go with chemo. He still feels ok, he can walk and he has no pain.

                            I can't help wondering if gamma knife is something we could consider? 

                            I'm sad for everyone on this road. My dad is very special to me and part of me doesn't want to give up, but I know that I have to be realistic too at this point. I think my mum also needs the support of palliative care, as a couple they have only spent 6 nights away from each other in 40 years together and there is some fear that she will take her own life. 

                            I have a young family and although I am only around the corner, I cannot watch someone 24/7.

                            My heart goes out to you all.

                            Nahmi from Melbourne

                            deardad
                            Participant

                              Maria I'm sorry to hear that the chemo has stopped working on Dave. My dad fortunately has had a good quality of life in this journey so far. Really the only thing that really knocked him around was the WBR and temador (for a week). I know that my dad has already made the decision not to go with chemo. He still feels ok, he can walk and he has no pain.

                              I can't help wondering if gamma knife is something we could consider? 

                              I'm sad for everyone on this road. My dad is very special to me and part of me doesn't want to give up, but I know that I have to be realistic too at this point. I think my mum also needs the support of palliative care, as a couple they have only spent 6 nights away from each other in 40 years together and there is some fear that she will take her own life. 

                              I have a young family and although I am only around the corner, I cannot watch someone 24/7.

                              My heart goes out to you all.

                              Nahmi from Melbourne

                              deardad
                              Participant

                                Maria I'm sorry to hear that the chemo has stopped working on Dave. My dad fortunately has had a good quality of life in this journey so far. Really the only thing that really knocked him around was the WBR and temador (for a week). I know that my dad has already made the decision not to go with chemo. He still feels ok, he can walk and he has no pain.

                                I can't help wondering if gamma knife is something we could consider? 

                                I'm sad for everyone on this road. My dad is very special to me and part of me doesn't want to give up, but I know that I have to be realistic too at this point. I think my mum also needs the support of palliative care, as a couple they have only spent 6 nights away from each other in 40 years together and there is some fear that she will take her own life. 

                                I have a young family and although I am only around the corner, I cannot watch someone 24/7.

                                My heart goes out to you all.

                                Nahmi from Melbourne

                              MeNDave
                              Participant

                                Hi Nahmi,

                                I'm so sorry that you are at these crossroads.  I can give you some input on the Carbo/Taxol – Dave received his first dose in April.  He did 3 rounds before we found out (last Thursday) that it was no longer working.  I can tell you that his quality of life while on the Chemo has been good (where prior to treatment, it wasn't).  We went camping, he stood up as best man in a wedding, life as usual.  When he started not feeling well, we knew it was due to the cancer, and not the chemo.  Dave is still fighting – he starts IPI on Thursday. 

                                I would strongly suggest that you get the pain/palliative people in place now.  I think anybody fighting a stage IV diagnosis would benefit from it.  We got in touch with them back in April, and they have been wonderful.  They can help with the pain/quality of life issues, and from a caregiver aspect, a lot of support for you. 

                                It's not an easy decision, and in the end, it really has to be his.  And please remember to take time for yourself.  I know it's easier said than done, but so important.

                                I'll be keeping you in my thoughts and prayers,

                                Maria

                                cwu
                                Participant

                                  Hi Nahmi,

                                  I am very sorry to hear about your father's condition and I can certainly relate as our family went through the same thing a few months ago. My dad's last treatment was Yervoy (IPI) and he had alot of complications when he got his last dose in November 2011. He was hospitalized for about 10 days and he was very confused and delirious, wasnt able to speak and didnt recognize us. Yervoy caused some swelling in his brain which caused all these symptoms. Fortunately he recovered and we decided as a family to stop treatment after that.  He has a mixed response to Yervoy and his lesions are still progressing but as fast.  He has many lesions on his leg some which are bleeding continuously. and his leg has to be wrapped. So he is certainly suffering alot and definitely does not have the quality of life that he had before he got sick. It is very hard for me to accept that there is nothing out there that can help him but we also dont want to put him through another drug/ treatment that would make him weaker or cause other problems especially since these drugs are so new and their side effects vary from person to person.

                                  I am sorry I couldnt be much help, I just wanted to let you know that I know what you are going through and there is no right or wrong answer.

                                  Chau 

                                  cwu
                                  Participant

                                    Hi Nahmi,

                                    I am very sorry to hear about your father's condition and I can certainly relate as our family went through the same thing a few months ago. My dad's last treatment was Yervoy (IPI) and he had alot of complications when he got his last dose in November 2011. He was hospitalized for about 10 days and he was very confused and delirious, wasnt able to speak and didnt recognize us. Yervoy caused some swelling in his brain which caused all these symptoms. Fortunately he recovered and we decided as a family to stop treatment after that.  He has a mixed response to Yervoy and his lesions are still progressing but as fast.  He has many lesions on his leg some which are bleeding continuously. and his leg has to be wrapped. So he is certainly suffering alot and definitely does not have the quality of life that he had before he got sick. It is very hard for me to accept that there is nothing out there that can help him but we also dont want to put him through another drug/ treatment that would make him weaker or cause other problems especially since these drugs are so new and their side effects vary from person to person.

                                    I am sorry I couldnt be much help, I just wanted to let you know that I know what you are going through and there is no right or wrong answer.

                                    Chau 

                                      mcreynolds
                                      Participant

                                        Chau,

                                        My father finished his yervoy treatments in December.  We just put him in the hospital.  He is almost non-responsive, delirious, and very confused.  Babbles and doesn't seem to be able to track us or know who we are.  All his scans, vitals are normal.  This is the 1st response that I have seen that is similar to him.  Bristol Meyers(drug company) did tell us that there have been reports of mind alterations but it was not in the literature.  Can you give me any more info on your father.  How long did it last, what did they treat him with. 

                                        Thank you,

                                        Lisa 

                                        mcreynolds
                                        Participant

                                          Chau,

                                          My father finished his yervoy treatments in December.  We just put him in the hospital.  He is almost non-responsive, delirious, and very confused.  Babbles and doesn't seem to be able to track us or know who we are.  All his scans, vitals are normal.  This is the 1st response that I have seen that is similar to him.  Bristol Meyers(drug company) did tell us that there have been reports of mind alterations but it was not in the literature.  Can you give me any more info on your father.  How long did it last, what did they treat him with. 

                                          Thank you,

                                          Lisa 

                                          mcreynolds
                                          Participant

                                            Chau,

                                            My father finished his yervoy treatments in December.  We just put him in the hospital.  He is almost non-responsive, delirious, and very confused.  Babbles and doesn't seem to be able to track us or know who we are.  All his scans, vitals are normal.  This is the 1st response that I have seen that is similar to him.  Bristol Meyers(drug company) did tell us that there have been reports of mind alterations but it was not in the literature.  Can you give me any more info on your father.  How long did it last, what did they treat him with. 

                                            Thank you,

                                            Lisa 

                                          cwu
                                          Participant

                                            Hi Nahmi,

                                            I am very sorry to hear about your father's condition and I can certainly relate as our family went through the same thing a few months ago. My dad's last treatment was Yervoy (IPI) and he had alot of complications when he got his last dose in November 2011. He was hospitalized for about 10 days and he was very confused and delirious, wasnt able to speak and didnt recognize us. Yervoy caused some swelling in his brain which caused all these symptoms. Fortunately he recovered and we decided as a family to stop treatment after that.  He has a mixed response to Yervoy and his lesions are still progressing but as fast.  He has many lesions on his leg some which are bleeding continuously. and his leg has to be wrapped. So he is certainly suffering alot and definitely does not have the quality of life that he had before he got sick. It is very hard for me to accept that there is nothing out there that can help him but we also dont want to put him through another drug/ treatment that would make him weaker or cause other problems especially since these drugs are so new and their side effects vary from person to person.

                                            I am sorry I couldnt be much help, I just wanted to let you know that I know what you are going through and there is no right or wrong answer.

                                            Chau 

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