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Failed TIL…Jim B and others need advice.

Forums General Melanoma Community Failed TIL…Jim B and others need advice.

  • Post
    ValinMtl
    Participant

      Unfortunately, NCI advised that the TIL is no longer work on the surface area of my skin.  It has improved lesions in my leg but the surface has increased too much and I need to find a new immunology.   I heard that Dartmouth might have an anti-PDI drug would that be worth looking at.  Any suggests would be appreciated.  NCI is an exceptional hospital and would highly recommend going there..I wasn't fortunate, but there are many that are, very caring.

      sob  Val

      failed inteferon/ipi/TIL

      Unfortunately, NCI advised that the TIL is no longer work on the surface area of my skin.  It has improved lesions in my leg but the surface has increased too much and I need to find a new immunology.   I heard that Dartmouth might have an anti-PDI drug would that be worth looking at.  Any suggests would be appreciated.  NCI is an exceptional hospital and would highly recommend going there..I wasn't fortunate, but there are many that are, very caring.

      sob  Val

      failed inteferon/ipi/TIL

    Viewing 20 reply threads
    • Replies
        LynnLuc
        Participant

          Look for trials that use CT 011

           

          http://www.curetechbio.com/?TemplateID=29&PageID=145&TemplateType=14

           

          CT-011 is a humanized monoclonal antibody (mAb) that modulates the immune response and inhibits tumor growth and the spread of metastases. CT-011 interacts with PD-1 (Programmed Death-1), an inhibitory receptor belonging to the B7-receptor family that is expressed on lymphocytes and myeloid cells. Mechanistically, CT-011 blocks the function of PD-1, resulting in the attenuation of apoptotic processed in lymphocytes, primarily effector/memory T cells. CT-011 also augments anti-tumor activities of NK cells. The enhanced activities of T and NK cells are translated into the intensification of anti-tumor immune response and the generation of tumor-specific memory cells. CT-011 is being developed as a treatment for hematological malignancies and solid tumors.

          PD-1 and its ligand, PD-L1, have been demonstrated to play a central role in tumor recurrence and progression . The presence of these molecules on different tumors including different kinds of lymphoma, colorectal carcinoma, renal cell carcinoma and others, has been associated with poor prognosis and their expression was correlated with immune suppression at tumor-involved sites. In a workshop held by the National Cancer Institute in 2007, anti PD-1 agents were placed second in-rank out of 124 agents, for their potential to provide efficient immunotherapy for cancer.

          The efficacy of CT-011 was studied in a variety of experimental tumor models for leukemia/lymphoma, melanoma, lung, colon, fibrosarcoma, breast cancer and more. In all these models, single or multiple antibody doses administered 10–14 days post tumor inoculation were able to inhibit tumor growth, to extend the survival of tumor-bearing mice, and to generate tumor-specific protection against tumor re-challenge.

           

          A Phase I, dose escalation, clinical study in 17 hematological malignancy patients has been completed. The study showed that a single administration of CT-011 (0.2 to 6.0mg/kg) was overall safe and well tolerated with no observed serious/unexpected treatment-related adverse events and no observed infusion-related responses or autoimmune reactions. No single dose MTD could be established in this study. Interestingly, apparent clinical responses were observed in six of the patients exhibited as extended survival as follows: one Complete Remission (NHL – follicular lymphoma), four Stable Disease (HD, 2 CLL, and MM), and one minimal response (AML). Amongst immune modulating molecules, CT-011 presents a safe alternative exhibiting no signs of autoimmunity which commonly occurs in the presence of other immune-modulating antibodies.

           

          A Phase II safety and efficacy study of CT-011 in patients with diffuse large B-cell lymphoma following autologous stem cell transplantation is underway in the US and Israel. Another clinical study will evaluate the safety and preliminary efficacy of CT-011 in patients suffering from a variety of metastatic cancer diseases will be initiated in the second half of 2008.

          How does CT-011 work? Watch The Movie >

            ValinMtl
            Participant

              Thanks, for this info Lynn.  Val

              ValinMtl
              Participant

                Thanks, for this info Lynn.  Val

                ValinMtl
                Participant

                  Thanks, for this info Lynn.  Val

                LynnLuc
                Participant

                  Look for trials that use CT 011

                   

                  http://www.curetechbio.com/?TemplateID=29&PageID=145&TemplateType=14

                   

                  CT-011 is a humanized monoclonal antibody (mAb) that modulates the immune response and inhibits tumor growth and the spread of metastases. CT-011 interacts with PD-1 (Programmed Death-1), an inhibitory receptor belonging to the B7-receptor family that is expressed on lymphocytes and myeloid cells. Mechanistically, CT-011 blocks the function of PD-1, resulting in the attenuation of apoptotic processed in lymphocytes, primarily effector/memory T cells. CT-011 also augments anti-tumor activities of NK cells. The enhanced activities of T and NK cells are translated into the intensification of anti-tumor immune response and the generation of tumor-specific memory cells. CT-011 is being developed as a treatment for hematological malignancies and solid tumors.

                  PD-1 and its ligand, PD-L1, have been demonstrated to play a central role in tumor recurrence and progression . The presence of these molecules on different tumors including different kinds of lymphoma, colorectal carcinoma, renal cell carcinoma and others, has been associated with poor prognosis and their expression was correlated with immune suppression at tumor-involved sites. In a workshop held by the National Cancer Institute in 2007, anti PD-1 agents were placed second in-rank out of 124 agents, for their potential to provide efficient immunotherapy for cancer.

                  The efficacy of CT-011 was studied in a variety of experimental tumor models for leukemia/lymphoma, melanoma, lung, colon, fibrosarcoma, breast cancer and more. In all these models, single or multiple antibody doses administered 10–14 days post tumor inoculation were able to inhibit tumor growth, to extend the survival of tumor-bearing mice, and to generate tumor-specific protection against tumor re-challenge.

                   

                  A Phase I, dose escalation, clinical study in 17 hematological malignancy patients has been completed. The study showed that a single administration of CT-011 (0.2 to 6.0mg/kg) was overall safe and well tolerated with no observed serious/unexpected treatment-related adverse events and no observed infusion-related responses or autoimmune reactions. No single dose MTD could be established in this study. Interestingly, apparent clinical responses were observed in six of the patients exhibited as extended survival as follows: one Complete Remission (NHL – follicular lymphoma), four Stable Disease (HD, 2 CLL, and MM), and one minimal response (AML). Amongst immune modulating molecules, CT-011 presents a safe alternative exhibiting no signs of autoimmunity which commonly occurs in the presence of other immune-modulating antibodies.

                   

                  A Phase II safety and efficacy study of CT-011 in patients with diffuse large B-cell lymphoma following autologous stem cell transplantation is underway in the US and Israel. Another clinical study will evaluate the safety and preliminary efficacy of CT-011 in patients suffering from a variety of metastatic cancer diseases will be initiated in the second half of 2008.

                  How does CT-011 work? Watch The Movie >

                  LynnLuc
                  Participant

                    Look for trials that use CT 011

                     

                    http://www.curetechbio.com/?TemplateID=29&PageID=145&TemplateType=14

                     

                    CT-011 is a humanized monoclonal antibody (mAb) that modulates the immune response and inhibits tumor growth and the spread of metastases. CT-011 interacts with PD-1 (Programmed Death-1), an inhibitory receptor belonging to the B7-receptor family that is expressed on lymphocytes and myeloid cells. Mechanistically, CT-011 blocks the function of PD-1, resulting in the attenuation of apoptotic processed in lymphocytes, primarily effector/memory T cells. CT-011 also augments anti-tumor activities of NK cells. The enhanced activities of T and NK cells are translated into the intensification of anti-tumor immune response and the generation of tumor-specific memory cells. CT-011 is being developed as a treatment for hematological malignancies and solid tumors.

                    PD-1 and its ligand, PD-L1, have been demonstrated to play a central role in tumor recurrence and progression . The presence of these molecules on different tumors including different kinds of lymphoma, colorectal carcinoma, renal cell carcinoma and others, has been associated with poor prognosis and their expression was correlated with immune suppression at tumor-involved sites. In a workshop held by the National Cancer Institute in 2007, anti PD-1 agents were placed second in-rank out of 124 agents, for their potential to provide efficient immunotherapy for cancer.

                    The efficacy of CT-011 was studied in a variety of experimental tumor models for leukemia/lymphoma, melanoma, lung, colon, fibrosarcoma, breast cancer and more. In all these models, single or multiple antibody doses administered 10–14 days post tumor inoculation were able to inhibit tumor growth, to extend the survival of tumor-bearing mice, and to generate tumor-specific protection against tumor re-challenge.

                     

                    A Phase I, dose escalation, clinical study in 17 hematological malignancy patients has been completed. The study showed that a single administration of CT-011 (0.2 to 6.0mg/kg) was overall safe and well tolerated with no observed serious/unexpected treatment-related adverse events and no observed infusion-related responses or autoimmune reactions. No single dose MTD could be established in this study. Interestingly, apparent clinical responses were observed in six of the patients exhibited as extended survival as follows: one Complete Remission (NHL – follicular lymphoma), four Stable Disease (HD, 2 CLL, and MM), and one minimal response (AML). Amongst immune modulating molecules, CT-011 presents a safe alternative exhibiting no signs of autoimmunity which commonly occurs in the presence of other immune-modulating antibodies.

                     

                    A Phase II safety and efficacy study of CT-011 in patients with diffuse large B-cell lymphoma following autologous stem cell transplantation is underway in the US and Israel. Another clinical study will evaluate the safety and preliminary efficacy of CT-011 in patients suffering from a variety of metastatic cancer diseases will be initiated in the second half of 2008.

                    How does CT-011 work? Watch The Movie >

                    killmel
                    Participant

                      Hi Val,

                       

                      How were your scans?

                      If you do not have any internal lesions & it is only surface based based melanoma, maybe you should be looking for a different kind of treatment to treat surface melanoma.

                      How are you feeling? Are you able to eat & keep the food down?

                      My prayers go out to you.

                      Mary

                        ValinMtl
                        Participant

                          Thanks Mary.  I've been taking a few extra drugs and they have been helping me eat but I sleep a tremendous amount, hence the late delays in response,  Val

                          ValinMtl
                          Participant

                            Thanks Mary.  I've been taking a few extra drugs and they have been helping me eat but I sleep a tremendous amount, hence the late delays in response,  Val

                            ValinMtl
                            Participant

                              Thanks Mary.  I've been taking a few extra drugs and they have been helping me eat but I sleep a tremendous amount, hence the late delays in response,  Val

                            killmel
                            Participant

                              Hi Val,

                               

                              How were your scans?

                              If you do not have any internal lesions & it is only surface based based melanoma, maybe you should be looking for a different kind of treatment to treat surface melanoma.

                              How are you feeling? Are you able to eat & keep the food down?

                              My prayers go out to you.

                              Mary

                              killmel
                              Participant

                                Hi Val,

                                 

                                How were your scans?

                                If you do not have any internal lesions & it is only surface based based melanoma, maybe you should be looking for a different kind of treatment to treat surface melanoma.

                                How are you feeling? Are you able to eat & keep the food down?

                                My prayers go out to you.

                                Mary

                                Theresa123
                                Participant

                                  Val,  I had the exact same thing happen to me a year ago.  I had my TIL treatment in November 2010, with IL2  and chemo.  For one straight year previous to this I went to NIH from California, a long flight, to qualify to get this treatment.  I was so hopeful.  Then in December, they put my in a room and told me it didn't work.  I cried.  A Doctor since told me it was probably because I had biochemo, and people that have had biochemo usually fail TIL.  I wish they had told me that.  I hope my experience helps someone else.  NIH is a great hospital.  I spent Thanksgiving there last year. 

                                  failed interferon, biochemo, and TIL.   On yervoy at this( 2nd) time.

                                  Good luck, Val. 
                                   

                                    ValinMtl
                                    Participant

                                      Hi Teresa, yep it cetainly is  set-back with things you think are working out but aren't. Egads, Califorinia is FAR!!!!   I've very tired, the radiation took a look out of me but I'm hoping I can slowly improve.  Now I'm tired, on drugs and looking fo another treatment…Dr. Yang recommended either yervoy or antiPD1…I have a small lead to antiPD1, let's hope it works, I'm so tired of search, search and search some more. Val

                                      ValinMtl
                                      Participant

                                        Hi Teresa, yep it cetainly is  set-back with things you think are working out but aren't. Egads, Califorinia is FAR!!!!   I've very tired, the radiation took a look out of me but I'm hoping I can slowly improve.  Now I'm tired, on drugs and looking fo another treatment…Dr. Yang recommended either yervoy or antiPD1…I have a small lead to antiPD1, let's hope it works, I'm so tired of search, search and search some more. Val

                                        ValinMtl
                                        Participant

                                          Hi Teresa, yep it cetainly is  set-back with things you think are working out but aren't. Egads, Califorinia is FAR!!!!   I've very tired, the radiation took a look out of me but I'm hoping I can slowly improve.  Now I'm tired, on drugs and looking fo another treatment…Dr. Yang recommended either yervoy or antiPD1…I have a small lead to antiPD1, let's hope it works, I'm so tired of search, search and search some more. Val

                                          ValinMtl
                                          Participant

                                            Hi Teresa, yep it cetainly is  set-back with things you think are working out but aren't. Egads, Califorinia is FAR!!!!   I've very tired, the radiation took a look out of me but I'm hoping I can slowly improve.  Now I'm tired, on drugs and looking fo another treatment…Dr. Yang recommended either yervoy or antiPD1…I have a small lead to antiPD1, let's hope it works, I'm so tired of search, search and search some more. Val

                                            ValinMtl
                                            Participant

                                              Hi Teresa, yep it cetainly is  set-back with things you think are working out but aren't. Egads, Califorinia is FAR!!!!   I've very tired, the radiation took a look out of me but I'm hoping I can slowly improve.  Now I'm tired, on drugs and looking fo another treatment…Dr. Yang recommended either yervoy or antiPD1…I have a small lead to antiPD1, let's hope it works, I'm so tired of search, search and search some more. Val

                                              ValinMtl
                                              Participant

                                                Hi Teresa, yep it cetainly is  set-back with things you think are working out but aren't. Egads, Califorinia is FAR!!!!   I've very tired, the radiation took a look out of me but I'm hoping I can slowly improve.  Now I'm tired, on drugs and looking fo another treatment…Dr. Yang recommended either yervoy or antiPD1…I have a small lead to antiPD1, let's hope it works, I'm so tired of search, search and search some more. Val

                                                ValinMtl
                                                Participant

                                                  Hi Teresa, yep it cetainly is  set-back with things you think are working out but aren't. Egads, Califorinia is FAR!!!!   I've very tired, the radiation took a look out of me but I'm hoping I can slowly improve.  Now I'm tired, on drugs and looking fo another treatment…Dr. Yang recommended either yervoy or antiPD1…I have a small lead to antiPD1, let's hope it works, I'm so tired of search, search and search some more. Val

                                                  ValinMtl
                                                  Participant

                                                    Hi Teresa, yep it cetainly is  set-back with things you think are working out but aren't. Egads, Califorinia is FAR!!!!   I've very tired, the radiation took a look out of me but I'm hoping I can slowly improve.  Now I'm tired, on drugs and looking fo another treatment…Dr. Yang recommended either yervoy or antiPD1…I have a small lead to antiPD1, let's hope it works, I'm so tired of search, search and search some more. Val

                                                    ValinMtl
                                                    Participant

                                                      Hi Teresa, yep it cetainly is  set-back with things you think are working out but aren't. Egads, Califorinia is FAR!!!!   I've very tired, the radiation took a look out of me but I'm hoping I can slowly improve.  Now I'm tired, on drugs and looking fo another treatment…Dr. Yang recommended either yervoy or antiPD1…I have a small lead to antiPD1, let's hope it works, I'm so tired of search, search and search some more. Val

                                                    Theresa123
                                                    Participant

                                                      Val,  I had the exact same thing happen to me a year ago.  I had my TIL treatment in November 2010, with IL2  and chemo.  For one straight year previous to this I went to NIH from California, a long flight, to qualify to get this treatment.  I was so hopeful.  Then in December, they put my in a room and told me it didn't work.  I cried.  A Doctor since told me it was probably because I had biochemo, and people that have had biochemo usually fail TIL.  I wish they had told me that.  I hope my experience helps someone else.  NIH is a great hospital.  I spent Thanksgiving there last year. 

                                                      failed interferon, biochemo, and TIL.   On yervoy at this( 2nd) time.

                                                      Good luck, Val. 
                                                       

                                                      Theresa123
                                                      Participant

                                                        Val,  I had the exact same thing happen to me a year ago.  I had my TIL treatment in November 2010, with IL2  and chemo.  For one straight year previous to this I went to NIH from California, a long flight, to qualify to get this treatment.  I was so hopeful.  Then in December, they put my in a room and told me it didn't work.  I cried.  A Doctor since told me it was probably because I had biochemo, and people that have had biochemo usually fail TIL.  I wish they had told me that.  I hope my experience helps someone else.  NIH is a great hospital.  I spent Thanksgiving there last year. 

                                                        failed interferon, biochemo, and TIL.   On yervoy at this( 2nd) time.

                                                        Good luck, Val. 
                                                         

                                                        FormerCaregiver
                                                        Participant

                                                          Val, I am sorry to read that TIL has been ineffective for you. I have just had a quick
                                                          read of your profile, and I now wonder if you have primary dermal melanoma? See:
                                                          http://www.ncbi.nlm.nih.gov/pubmed/18209168

                                                          If this is the case, then perhaps a different approach such as PV-10 would be worth
                                                          considering?

                                                          Here is some info on a PV-10 (Rose Bengal) trial:
                                                          http://www.clinicaltrials.gov/ct2/show/NCT01260779?term=PV-10+melanoma&rank=3

                                                          This is an old video about it:
                                                          http://www.youtube.com/watch?v=HSjoev_q9Nw

                                                          The company's website is at:
                                                          http://www.pvct.com/

                                                          Hope this helps.

                                                          Frank from Australia

                                                            ValinMtl
                                                            Participant

                                                              Thanks Frank,  I've always wondered what time of melanoma I had, even the resident said this time…"I wonder what type you have"….I'm taking this info with me and will try to get an answer,  Val

                                                              ValinMtl
                                                              Participant

                                                                Thanks Frank,  I've always wondered what time of melanoma I had, even the resident said this time…"I wonder what type you have"….I'm taking this info with me and will try to get an answer,  Val

                                                                ValinMtl
                                                                Participant

                                                                  Thanks Frank,  I've always wondered what time of melanoma I had, even the resident said this time…"I wonder what type you have"….I'm taking this info with me and will try to get an answer,  Val

                                                                FormerCaregiver
                                                                Participant

                                                                  Val, I am sorry to read that TIL has been ineffective for you. I have just had a quick
                                                                  read of your profile, and I now wonder if you have primary dermal melanoma? See:
                                                                  http://www.ncbi.nlm.nih.gov/pubmed/18209168

                                                                  If this is the case, then perhaps a different approach such as PV-10 would be worth
                                                                  considering?

                                                                  Here is some info on a PV-10 (Rose Bengal) trial:
                                                                  http://www.clinicaltrials.gov/ct2/show/NCT01260779?term=PV-10+melanoma&rank=3

                                                                  This is an old video about it:
                                                                  http://www.youtube.com/watch?v=HSjoev_q9Nw

                                                                  The company's website is at:
                                                                  http://www.pvct.com/

                                                                  Hope this helps.

                                                                  Frank from Australia

                                                                  FormerCaregiver
                                                                  Participant

                                                                    Val, I am sorry to read that TIL has been ineffective for you. I have just had a quick
                                                                    read of your profile, and I now wonder if you have primary dermal melanoma? See:
                                                                    http://www.ncbi.nlm.nih.gov/pubmed/18209168

                                                                    If this is the case, then perhaps a different approach such as PV-10 would be worth
                                                                    considering?

                                                                    Here is some info on a PV-10 (Rose Bengal) trial:
                                                                    http://www.clinicaltrials.gov/ct2/show/NCT01260779?term=PV-10+melanoma&rank=3

                                                                    This is an old video about it:
                                                                    http://www.youtube.com/watch?v=HSjoev_q9Nw

                                                                    The company's website is at:
                                                                    http://www.pvct.com/

                                                                    Hope this helps.

                                                                    Frank from Australia

                                                                    JerryfromFauq
                                                                    Participant

                                                                      Val, would any of the info about cremes that I posted in response to Shimian;s post =11/4/2011-2:40pm

                                                                      (http://www.melanoma.org/community/mpip-melanoma-patients-information-page/keep-getting-postive-margin-after-3-wide-excisions)

                                                                      at  

                                                                      Re: keep getting postive margin after 3 wide excisions last …

                                                                      JerryfromFauq

                                                                       Wishing youb success.

                                                                       

                                                                      JerryfromFauq
                                                                      Participant

                                                                        Val, would any of the info about cremes that I posted in response to Shimian;s post =11/4/2011-2:40pm

                                                                        (http://www.melanoma.org/community/mpip-melanoma-patients-information-page/keep-getting-postive-margin-after-3-wide-excisions)

                                                                        at  

                                                                        Re: keep getting postive margin after 3 wide excisions last …

                                                                        JerryfromFauq

                                                                         Wishing youb success.

                                                                         

                                                                        JerryfromFauq
                                                                        Participant

                                                                          Val, would any of the info about cremes that I posted in response to Shimian;s post =11/4/2011-2:40pm

                                                                          (http://www.melanoma.org/community/mpip-melanoma-patients-information-page/keep-getting-postive-margin-after-3-wide-excisions)

                                                                          at  

                                                                          Re: keep getting postive margin after 3 wide excisions last …

                                                                          JerryfromFauq

                                                                           Wishing youb success.

                                                                           

                                                                            FormerCaregiver
                                                                            Participant

                                                                              Jerry, it looks like more research needs to be done to more accurately identify the type of melanoma so that the best treatment can be used. From what I have read, primary dermal melanoma (PDM) behaves quiet differently from other types. With PDM it also seems possible to have a deep primary while still having a good prognosis.

                                                                              I have found that posting forum links is tricky and main topic links don't seem to work on my computer. However, responses to topic links work ok but one needs to copy and paste the link into the address bar of one's browser.

                                                                              Best wishes

                                                                              Frank from Australia

                                                                              FormerCaregiver
                                                                              Participant

                                                                                Jerry, it looks like more research needs to be done to more accurately identify the type of melanoma so that the best treatment can be used. From what I have read, primary dermal melanoma (PDM) behaves quiet differently from other types. With PDM it also seems possible to have a deep primary while still having a good prognosis.

                                                                                I have found that posting forum links is tricky and main topic links don't seem to work on my computer. However, responses to topic links work ok but one needs to copy and paste the link into the address bar of one's browser.

                                                                                Best wishes

                                                                                Frank from Australia

                                                                                FormerCaregiver
                                                                                Participant

                                                                                  Jerry, it looks like more research needs to be done to more accurately identify the type of melanoma so that the best treatment can be used. From what I have read, primary dermal melanoma (PDM) behaves quiet differently from other types. With PDM it also seems possible to have a deep primary while still having a good prognosis.

                                                                                  I have found that posting forum links is tricky and main topic links don't seem to work on my computer. However, responses to topic links work ok but one needs to copy and paste the link into the address bar of one's browser.

                                                                                  Best wishes

                                                                                  Frank from Australia

                                                                                  ValinMtl
                                                                                  Participant

                                                                                    Thanks Jerrry, I'm going to take a look….just I'm so drugged out but treatments had to get my head out of bed!!!

                                                                                    ValinMtl
                                                                                    Participant

                                                                                      Thanks Jerrry, I'm going to take a look….just I'm so drugged out but treatments had to get my head out of bed!!!

                                                                                      ValinMtl
                                                                                      Participant

                                                                                        Thanks Jerrry, I'm going to take a look….just I'm so drugged out but treatments had to get my head out of bed!!!

                                                                                      Charlie S
                                                                                      Participant

                                                                                        You did not fail anything.  You chose or were directed to a treatment that did not work.

                                                                                        YOU did not fail anything.

                                                                                        I realize to some this may seem a matter of semantics and petty, but after more than a half dozen recurrences. I can assure you, that  to mention "you failed" is not a term that does anything to enhance cancer diagnosis or treatment coping skills.

                                                                                        Failure, to me, as far as cancer is concerned, is defined as not accepting responsibility for the existing problem and refusing to act.

                                                                                        Yes, it is a mindset and no, mindset alone is not always enough to kick melanoma to the curb.

                                                                                        But to associate a treatment that did not work with failure is wrong headed and sets the mind in a rear view approach that serves no useful purpose other than a matter of exclusion;  as opposed to a mindset of forward thinking.

                                                                                         Use it as a tool that allows you to direct your care,  to free you and force others around you  to not only work the problem but find solutions.

                                                                                        It gets my hackles up (whatever hackles are) when patients mention failure..  A treatment did not work, the issue therefor is not one of failure, but a springboard towards the   search for success.

                                                                                        Try that attitude with your doctors , let it be known you are the Captain of the Ship and challenge them, as your crew to guide you through this storm.

                                                                                        That mindset will take you far inn dealing with and coping with melanoma.

                                                                                        It's about the only control one has in a seemingly uncontrollable situation.

                                                                                        Just a thought.

                                                                                        Cheers,

                                                                                        Charlie S

                                                                                        Charlie S
                                                                                        Participant

                                                                                          You did not fail anything.  You chose or were directed to a treatment that did not work.

                                                                                          YOU did not fail anything.

                                                                                          I realize to some this may seem a matter of semantics and petty, but after more than a half dozen recurrences. I can assure you, that  to mention "you failed" is not a term that does anything to enhance cancer diagnosis or treatment coping skills.

                                                                                          Failure, to me, as far as cancer is concerned, is defined as not accepting responsibility for the existing problem and refusing to act.

                                                                                          Yes, it is a mindset and no, mindset alone is not always enough to kick melanoma to the curb.

                                                                                          But to associate a treatment that did not work with failure is wrong headed and sets the mind in a rear view approach that serves no useful purpose other than a matter of exclusion;  as opposed to a mindset of forward thinking.

                                                                                           Use it as a tool that allows you to direct your care,  to free you and force others around you  to not only work the problem but find solutions.

                                                                                          It gets my hackles up (whatever hackles are) when patients mention failure..  A treatment did not work, the issue therefor is not one of failure, but a springboard towards the   search for success.

                                                                                          Try that attitude with your doctors , let it be known you are the Captain of the Ship and challenge them, as your crew to guide you through this storm.

                                                                                          That mindset will take you far inn dealing with and coping with melanoma.

                                                                                          It's about the only control one has in a seemingly uncontrollable situation.

                                                                                          Just a thought.

                                                                                          Cheers,

                                                                                          Charlie S

                                                                                          Charlie S
                                                                                          Participant

                                                                                            You did not fail anything.  You chose or were directed to a treatment that did not work.

                                                                                            YOU did not fail anything.

                                                                                            I realize to some this may seem a matter of semantics and petty, but after more than a half dozen recurrences. I can assure you, that  to mention "you failed" is not a term that does anything to enhance cancer diagnosis or treatment coping skills.

                                                                                            Failure, to me, as far as cancer is concerned, is defined as not accepting responsibility for the existing problem and refusing to act.

                                                                                            Yes, it is a mindset and no, mindset alone is not always enough to kick melanoma to the curb.

                                                                                            But to associate a treatment that did not work with failure is wrong headed and sets the mind in a rear view approach that serves no useful purpose other than a matter of exclusion;  as opposed to a mindset of forward thinking.

                                                                                             Use it as a tool that allows you to direct your care,  to free you and force others around you  to not only work the problem but find solutions.

                                                                                            It gets my hackles up (whatever hackles are) when patients mention failure..  A treatment did not work, the issue therefor is not one of failure, but a springboard towards the   search for success.

                                                                                            Try that attitude with your doctors , let it be known you are the Captain of the Ship and challenge them, as your crew to guide you through this storm.

                                                                                            That mindset will take you far inn dealing with and coping with melanoma.

                                                                                            It's about the only control one has in a seemingly uncontrollable situation.

                                                                                            Just a thought.

                                                                                            Cheers,

                                                                                            Charlie S

                                                                                            boot2aboot
                                                                                            Participant

                                                                                              Val,

                                                                                              plan a visit to Jeff Weber at Moffitt in Tampa, Fl…he is very accessible,smart and helpful and has certainly helped me and others on this site…i feel he would know what to do and he would talk and coordinate with your onc if you go and see him…he also has some very effective drug trials going and can tell you if you qualify or not…

                                                                                              boots

                                                                                              boot2aboot
                                                                                              Participant

                                                                                                Val,

                                                                                                plan a visit to Jeff Weber at Moffitt in Tampa, Fl…he is very accessible,smart and helpful and has certainly helped me and others on this site…i feel he would know what to do and he would talk and coordinate with your onc if you go and see him…he also has some very effective drug trials going and can tell you if you qualify or not…

                                                                                                boots

                                                                                                boot2aboot
                                                                                                Participant

                                                                                                  Val,

                                                                                                  plan a visit to Jeff Weber at Moffitt in Tampa, Fl…he is very accessible,smart and helpful and has certainly helped me and others on this site…i feel he would know what to do and he would talk and coordinate with your onc if you go and see him…he also has some very effective drug trials going and can tell you if you qualify or not…

                                                                                                  boots

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                                                                                              The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

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