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ETF111

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      ETF111
      Participant

         

        If you would like, I will share with you my knowledge.

         

        I am a 55-year-old Caucasian male who was diagnosed with Stage IV Metastatic Melanoma at the end of last July. Like everyone else, I was given the "doom and gloom" prognosis of 6 to 9 months.

         

        Here it is seven months later, and I am showing no signs of the disease and my treatment is going well.

         

        I am being treated at Moffitt Cancer Center in Tampa, Florida with Yervoy. I had four doses approximately 3 weeks apart when the last one being New Years Eve 2012. I had no side effects of any significance.

         

        Like one of the other replies before me, I was told that Yervoy must fail before they can start you on the Anti-PD 1. The reason I had explained to me is that both of these drugs are owned by the same company and I guess it has something to do with allowing them to recover their R & D costs. I have based on what I have read and have been told I would prefer your Option B.

         

        Why? My main physician said the Anti-PD 1 drug is much better and has a higher success rate with longer longevity. He even went on to tell me the story of one of his professors in school telling him that if he had one drug to combat cancer, he would prefer the Anti-PD1 over all others.

         

        I hope it helps. Please make sure you do what you can, and more importantly, your husband does what he can, to maintain a positive outlook and take a refusal position to allow this disease to overcome him. I would be the first to admit that there are no known studies that even remotely suggest that one's outlook has anything to do with the outcome. On the other hand, and to be fair, they have not performed any such studies because the money and time is consumed by cures.

        ETF111
        Participant

           

          If you would like, I will share with you my knowledge.

           

          I am a 55-year-old Caucasian male who was diagnosed with Stage IV Metastatic Melanoma at the end of last July. Like everyone else, I was given the "doom and gloom" prognosis of 6 to 9 months.

           

          Here it is seven months later, and I am showing no signs of the disease and my treatment is going well.

           

          I am being treated at Moffitt Cancer Center in Tampa, Florida with Yervoy. I had four doses approximately 3 weeks apart when the last one being New Years Eve 2012. I had no side effects of any significance.

           

          Like one of the other replies before me, I was told that Yervoy must fail before they can start you on the Anti-PD 1. The reason I had explained to me is that both of these drugs are owned by the same company and I guess it has something to do with allowing them to recover their R & D costs. I have based on what I have read and have been told I would prefer your Option B.

           

          Why? My main physician said the Anti-PD 1 drug is much better and has a higher success rate with longer longevity. He even went on to tell me the story of one of his professors in school telling him that if he had one drug to combat cancer, he would prefer the Anti-PD1 over all others.

           

          I hope it helps. Please make sure you do what you can, and more importantly, your husband does what he can, to maintain a positive outlook and take a refusal position to allow this disease to overcome him. I would be the first to admit that there are no known studies that even remotely suggest that one's outlook has anything to do with the outcome. On the other hand, and to be fair, they have not performed any such studies because the money and time is consumed by cures.

          ETF111
          Participant

             

            If you would like, I will share with you my knowledge.

             

            I am a 55-year-old Caucasian male who was diagnosed with Stage IV Metastatic Melanoma at the end of last July. Like everyone else, I was given the "doom and gloom" prognosis of 6 to 9 months.

             

            Here it is seven months later, and I am showing no signs of the disease and my treatment is going well.

             

            I am being treated at Moffitt Cancer Center in Tampa, Florida with Yervoy. I had four doses approximately 3 weeks apart when the last one being New Years Eve 2012. I had no side effects of any significance.

             

            Like one of the other replies before me, I was told that Yervoy must fail before they can start you on the Anti-PD 1. The reason I had explained to me is that both of these drugs are owned by the same company and I guess it has something to do with allowing them to recover their R & D costs. I have based on what I have read and have been told I would prefer your Option B.

             

            Why? My main physician said the Anti-PD 1 drug is much better and has a higher success rate with longer longevity. He even went on to tell me the story of one of his professors in school telling him that if he had one drug to combat cancer, he would prefer the Anti-PD1 over all others.

             

            I hope it helps. Please make sure you do what you can, and more importantly, your husband does what he can, to maintain a positive outlook and take a refusal position to allow this disease to overcome him. I would be the first to admit that there are no known studies that even remotely suggest that one's outlook has anything to do with the outcome. On the other hand, and to be fair, they have not performed any such studies because the money and time is consumed by cures.

            ETF111
            Participant

               

              If you would like, I will share with you my knowledge.

               

              I am a 55-year-old Caucasian male who was diagnosed with Stage IV Metastatic Melanoma at the end of last July. In my lymphnods, lungs and brain. Like everyone else, I was given the "doom and gloom" prognosis of 6 to 9 months.

               

              Here it is seven months later, and I am showing no signs of the disease and my treatment is going well.

               

              I am being treated at Moffitt Cancer Center in Tampa, Florida with Yervoy. I had four doses approximately 3 weeks apart with the last one being New Years Eve 2012. I had no side effects of any significance.

               

              Like one of the other replies before me, I was told that Yervoy must fail before they can start you on the Anti-PD 1. The reason I had explained to me is that both of these drugs are owned by the same company and I guess it has something to do with allowing them to recover their R & D costs. Based on what I have read and have been told I would prefer your Option B.

               

              Why? My main physician said the Anti-PD 1 drug is much better and has a higher success rate with longer longevity. He even went on to tell me the story of one of his professors in school telling him that if he had one drug to combat cancer, he would prefer the Anti-PD1 over all others.

               

              I hope it helps. Please make sure you do what you can, and more importantly, your husband does what he can, to maintain a positive outlook and take a refusal position to allow this disease to overcome him. I would be the first to admit that there are no known studies that even remotely suggest that one's outlook has anything to do with the outcome. On the other hand, and to be fair, they have not performed any such studies because the money and time is consumed by cures.

              ETF111
              Participant

                 

                If you would like, I will share with you my knowledge.

                 

                I am a 55-year-old Caucasian male who was diagnosed with Stage IV Metastatic Melanoma at the end of last July. In my lymphnods, lungs and brain. Like everyone else, I was given the "doom and gloom" prognosis of 6 to 9 months.

                 

                Here it is seven months later, and I am showing no signs of the disease and my treatment is going well.

                 

                I am being treated at Moffitt Cancer Center in Tampa, Florida with Yervoy. I had four doses approximately 3 weeks apart with the last one being New Years Eve 2012. I had no side effects of any significance.

                 

                Like one of the other replies before me, I was told that Yervoy must fail before they can start you on the Anti-PD 1. The reason I had explained to me is that both of these drugs are owned by the same company and I guess it has something to do with allowing them to recover their R & D costs. Based on what I have read and have been told I would prefer your Option B.

                 

                Why? My main physician said the Anti-PD 1 drug is much better and has a higher success rate with longer longevity. He even went on to tell me the story of one of his professors in school telling him that if he had one drug to combat cancer, he would prefer the Anti-PD1 over all others.

                 

                I hope it helps. Please make sure you do what you can, and more importantly, your husband does what he can, to maintain a positive outlook and take a refusal position to allow this disease to overcome him. I would be the first to admit that there are no known studies that even remotely suggest that one's outlook has anything to do with the outcome. On the other hand, and to be fair, they have not performed any such studies because the money and time is consumed by cures.

                ETF111
                Participant

                   

                  If you would like, I will share with you my knowledge.

                   

                  I am a 55-year-old Caucasian male who was diagnosed with Stage IV Metastatic Melanoma at the end of last July. In my lymphnods, lungs and brain. Like everyone else, I was given the "doom and gloom" prognosis of 6 to 9 months.

                   

                  Here it is seven months later, and I am showing no signs of the disease and my treatment is going well.

                   

                  I am being treated at Moffitt Cancer Center in Tampa, Florida with Yervoy. I had four doses approximately 3 weeks apart with the last one being New Years Eve 2012. I had no side effects of any significance.

                   

                  Like one of the other replies before me, I was told that Yervoy must fail before they can start you on the Anti-PD 1. The reason I had explained to me is that both of these drugs are owned by the same company and I guess it has something to do with allowing them to recover their R & D costs. Based on what I have read and have been told I would prefer your Option B.

                   

                  Why? My main physician said the Anti-PD 1 drug is much better and has a higher success rate with longer longevity. He even went on to tell me the story of one of his professors in school telling him that if he had one drug to combat cancer, he would prefer the Anti-PD1 over all others.

                   

                  I hope it helps. Please make sure you do what you can, and more importantly, your husband does what he can, to maintain a positive outlook and take a refusal position to allow this disease to overcome him. I would be the first to admit that there are no known studies that even remotely suggest that one's outlook has anything to do with the outcome. On the other hand, and to be fair, they have not performed any such studies because the money and time is consumed by cures.

                  ETF111
                  Participant

                    Hi, it's been years …. literally 4 … since you posted. Just wondering how you're doing??? Still with us?

                     

                    Obviously I am and will go for my 5 year test in a few weeks. They say if it remains "gone" (as it has to their surpise for the last 4 years) it is not expected to ever come back.

                     

                    We'll see.

                     

                    Hope all is well.

                    ETF111
                    Participant

                      It's time for an UPDATE!

                      First, and foremost, I'm still here.

                      Even more important, my twin little boys are just over 1 year old now (and their birthday was somrething I was originally told I would not see … 6 days after they were born). (I know I know, waiting until I was 55 to start having children is crazy .. and I wouldn't have it any other way.)

                      Tomorrow, I go in for surgery to remove what is now suspected to be the last … little … place left in me the Stage IV metastatic melanoma might be hiding out. I'm almost guilty in saying I seem to have had one of the exceptional results to Yervoy as what had once spread to my lungs and then brain is now gone. In fact, I was told last year surgery was not even an optoin as it was too wide spread, the surgery would be too invasive and I'd spend my last few days of life in recovery.

                      Now, they're taking the exact opposite approach.

                      As most of you may know, once you get the diagnosis, you go back every 90 days in hopes it is not spreading – what my wife and I now call a "hall pass" for another 90 days of life. Imagine our surpise and delight when last time, they said I'd be around for years .. even said "20". They've now done 10 different biopsies trying to find any remnants of it, and I think they're taking the groin lymph nodes out more for assurance than a belief there really is any left or that it is active.

                       

                      To Dr. Gibney, Pat Henderson, Drs. Rao and Etame at Moffitt in Tampa, I literally owe my life to them.

                      The thoughts, kind words and prayers from all of you here have been valuable beyond expression. My gratitude is incapable of being fairly expressed.

                      I will post more after the surgery tomorrow.

                      Please … in the for "whatever it is worth" category … let those who have been given this "death sentence" know it isn't always so. For a year, I've been holding my little ones wondering how many more hugs with them I would ever have and knowing they would never remeber me. Now we're "re-adjusting" to me becoming a more futristic thinking family member.

                      Through it all, though, I have refused to accept the diagnosis. I have remainded active, worked out, kept working … have still hidden the diagnosis from my Mother, Father and brother and sister.

                      I know there are no studies showing one's outlook can affect the outcome … but … I also know money for research is so scarce, they haven't DONE any such studies, either.

                      Refuse to accept, do what you can to keep the rest of your body and mind as healthy as possible and give the sick part of your body some help …

                      I ain't saying it will help … but I sure don't belive it will hurt.

                      Bless you all and more to come soon ….

                       

                      Ellis

                      ETF111
                      Participant

                        It's time for an UPDATE!

                        First, and foremost, I'm still here.

                        Even more important, my twin little boys are just over 1 year old now (and their birthday was somrething I was originally told I would not see … 6 days after they were born). (I know I know, waiting until I was 55 to start having children is crazy .. and I wouldn't have it any other way.)

                        Tomorrow, I go in for surgery to remove what is now suspected to be the last … little … place left in me the Stage IV metastatic melanoma might be hiding out. I'm almost guilty in saying I seem to have had one of the exceptional results to Yervoy as what had once spread to my lungs and then brain is now gone. In fact, I was told last year surgery was not even an optoin as it was too wide spread, the surgery would be too invasive and I'd spend my last few days of life in recovery.

                        Now, they're taking the exact opposite approach.

                        As most of you may know, once you get the diagnosis, you go back every 90 days in hopes it is not spreading – what my wife and I now call a "hall pass" for another 90 days of life. Imagine our surpise and delight when last time, they said I'd be around for years .. even said "20". They've now done 10 different biopsies trying to find any remnants of it, and I think they're taking the groin lymph nodes out more for assurance than a belief there really is any left or that it is active.

                         

                        To Dr. Gibney, Pat Henderson, Drs. Rao and Etame at Moffitt in Tampa, I literally owe my life to them.

                        The thoughts, kind words and prayers from all of you here have been valuable beyond expression. My gratitude is incapable of being fairly expressed.

                        I will post more after the surgery tomorrow.

                        Please … in the for "whatever it is worth" category … let those who have been given this "death sentence" know it isn't always so. For a year, I've been holding my little ones wondering how many more hugs with them I would ever have and knowing they would never remeber me. Now we're "re-adjusting" to me becoming a more futristic thinking family member.

                        Through it all, though, I have refused to accept the diagnosis. I have remainded active, worked out, kept working … have still hidden the diagnosis from my Mother, Father and brother and sister.

                        I know there are no studies showing one's outlook can affect the outcome … but … I also know money for research is so scarce, they haven't DONE any such studies, either.

                        Refuse to accept, do what you can to keep the rest of your body and mind as healthy as possible and give the sick part of your body some help …

                        I ain't saying it will help … but I sure don't belive it will hurt.

                        Bless you all and more to come soon ….

                         

                        Ellis

                        ETF111
                        Participant

                          It's time for an UPDATE!

                          First, and foremost, I'm still here.

                          Even more important, my twin little boys are just over 1 year old now (and their birthday was somrething I was originally told I would not see … 6 days after they were born). (I know I know, waiting until I was 55 to start having children is crazy .. and I wouldn't have it any other way.)

                          Tomorrow, I go in for surgery to remove what is now suspected to be the last … little … place left in me the Stage IV metastatic melanoma might be hiding out. I'm almost guilty in saying I seem to have had one of the exceptional results to Yervoy as what had once spread to my lungs and then brain is now gone. In fact, I was told last year surgery was not even an optoin as it was too wide spread, the surgery would be too invasive and I'd spend my last few days of life in recovery.

                          Now, they're taking the exact opposite approach.

                          As most of you may know, once you get the diagnosis, you go back every 90 days in hopes it is not spreading – what my wife and I now call a "hall pass" for another 90 days of life. Imagine our surpise and delight when last time, they said I'd be around for years .. even said "20". They've now done 10 different biopsies trying to find any remnants of it, and I think they're taking the groin lymph nodes out more for assurance than a belief there really is any left or that it is active.

                           

                          To Dr. Gibney, Pat Henderson, Drs. Rao and Etame at Moffitt in Tampa, I literally owe my life to them.

                          The thoughts, kind words and prayers from all of you here have been valuable beyond expression. My gratitude is incapable of being fairly expressed.

                          I will post more after the surgery tomorrow.

                          Please … in the for "whatever it is worth" category … let those who have been given this "death sentence" know it isn't always so. For a year, I've been holding my little ones wondering how many more hugs with them I would ever have and knowing they would never remeber me. Now we're "re-adjusting" to me becoming a more futristic thinking family member.

                          Through it all, though, I have refused to accept the diagnosis. I have remainded active, worked out, kept working … have still hidden the diagnosis from my Mother, Father and brother and sister.

                          I know there are no studies showing one's outlook can affect the outcome … but … I also know money for research is so scarce, they haven't DONE any such studies, either.

                          Refuse to accept, do what you can to keep the rest of your body and mind as healthy as possible and give the sick part of your body some help …

                          I ain't saying it will help … but I sure don't belive it will hurt.

                          Bless you all and more to come soon ….

                           

                          Ellis

                          ETF111
                          Participant

                            We LOVE reading these stories (although, and at least right now, no matter how many my wife reads, she's still upset!). I was hoping everyone hears the same "pitch" we did. I'm still dizzy over it today … and of course, I'm now thinking my confusion is a sign of brain metastasis!!! It makes you think of giving up before you start! Yet, as I was trying to tell everyone last night, I'd like to at least START the fight before I admit defeat … which I don't plan on doing easily. Were you Stage IV? Did they do a surgery? I was told not to do a surgery as it really wouldn't be a good use of time.

                             

                            Thank you, again, Tina, and I hope you're doing as well now as you seem to be.

                             

                            Ellis

                            ETF111
                            Participant

                              We LOVE reading these stories (although, and at least right now, no matter how many my wife reads, she's still upset!). I was hoping everyone hears the same "pitch" we did. I'm still dizzy over it today … and of course, I'm now thinking my confusion is a sign of brain metastasis!!! It makes you think of giving up before you start! Yet, as I was trying to tell everyone last night, I'd like to at least START the fight before I admit defeat … which I don't plan on doing easily. Were you Stage IV? Did they do a surgery? I was told not to do a surgery as it really wouldn't be a good use of time.

                               

                              Thank you, again, Tina, and I hope you're doing as well now as you seem to be.

                               

                              Ellis

                              ETF111
                              Participant

                                We LOVE reading these stories (although, and at least right now, no matter how many my wife reads, she's still upset!). I was hoping everyone hears the same "pitch" we did. I'm still dizzy over it today … and of course, I'm now thinking my confusion is a sign of brain metastasis!!! It makes you think of giving up before you start! Yet, as I was trying to tell everyone last night, I'd like to at least START the fight before I admit defeat … which I don't plan on doing easily. Were you Stage IV? Did they do a surgery? I was told not to do a surgery as it really wouldn't be a good use of time.

                                 

                                Thank you, again, Tina, and I hope you're doing as well now as you seem to be.

                                 

                                Ellis

                                ETF111
                                Participant

                                  Well, my wife and I had our first meeting at Moffitt today. To say it was less than encouraging would be wrong.

                                   

                                  Hopefully, they were just giving us the "doom and gloom" speech for legal reasons. (Being a lawyer, it is what I was telling my wife … who is now inconsolable.)

                                   

                                  We were told of the 6-9 month life expectancy. Because I've got mestatic involvement in more than one place it is Stage IV and surgical removal would not be beneficial (chances of recurrence during the surgery and healng period would waste time in treatment and we'd probably see a recurrence during that time anyway). Met with the surgeon and he was able to "guess" where it started on my leg (about 2 1/2 years ago, and interestingly, the plastic surgeon who removed it said I should get a sentinal node biopsy and the oncologist we followed-up with said no, it's not going to be melanoma! Lesson learned.).

                                   

                                  They now need a brain MRI to see if any lesions there and he's expecting to see them. Then we need a needle biopsy of the two spots on my lungs with one being about 2cm at its widest spot (one showed uptake on the PET and the other didn't which, according to Dr., means it's just so big it wouldn't show it). Last they'll get the path reports and tissue samples from the biopsy and see if it's the BRAF mutation (?).

                                   

                                  Maybe he just assumed with my background or something, I can handle more or my wife can. Not the best of bedside manners, but then again, they can't sit down with each patient and cry about having twins less than 60 days ago who will never know me. they wouldn't get anything acomplished if they did.

                                   

                                  Is our "introduction" to what the future holds typical? I just think I ought to be exeriencing something horrble or feeling really bad if it's going to truly be the doom and gloom result.

                                   

                                  Then I read of the grat stories of you all and wonder, did you all get this kind of a talk, too???

                                  ETF111
                                  Participant

                                    Well, my wife and I had our first meeting at Moffitt today. To say it was less than encouraging would be wrong.

                                     

                                    Hopefully, they were just giving us the "doom and gloom" speech for legal reasons. (Being a lawyer, it is what I was telling my wife … who is now inconsolable.)

                                     

                                    We were told of the 6-9 month life expectancy. Because I've got mestatic involvement in more than one place it is Stage IV and surgical removal would not be beneficial (chances of recurrence during the surgery and healng period would waste time in treatment and we'd probably see a recurrence during that time anyway). Met with the surgeon and he was able to "guess" where it started on my leg (about 2 1/2 years ago, and interestingly, the plastic surgeon who removed it said I should get a sentinal node biopsy and the oncologist we followed-up with said no, it's not going to be melanoma! Lesson learned.).

                                     

                                    They now need a brain MRI to see if any lesions there and he's expecting to see them. Then we need a needle biopsy of the two spots on my lungs with one being about 2cm at its widest spot (one showed uptake on the PET and the other didn't which, according to Dr., means it's just so big it wouldn't show it). Last they'll get the path reports and tissue samples from the biopsy and see if it's the BRAF mutation (?).

                                     

                                    Maybe he just assumed with my background or something, I can handle more or my wife can. Not the best of bedside manners, but then again, they can't sit down with each patient and cry about having twins less than 60 days ago who will never know me. they wouldn't get anything acomplished if they did.

                                     

                                    Is our "introduction" to what the future holds typical? I just think I ought to be exeriencing something horrble or feeling really bad if it's going to truly be the doom and gloom result.

                                     

                                    Then I read of the grat stories of you all and wonder, did you all get this kind of a talk, too???

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