melanoma treatment options for someone on immunosuppression drugs after kidney transplant

Forums General Melanoma Community melanoma treatment options for someone on immunosuppression drugs after kidney transplant

  • Post
    nsabel
    Participant

      Hi– thanks for taking time to look at this question. 

      Hi– thanks for taking time to look at this question. 

      My 70 year old father received a kidney transplant in early 2008 and melanoma was found on his neck and several lymph nodes around his jaw/neck in mid-2009. All impacted areas were surgically removed (at tampa general) and he has been doing well until the most recent pet scan (5 lymph node areas in neck).  We're trying to find someone who understands his situation (metastatic melanoma in a immunosuppressed patient) and can spearhead a treatment plan. He doesnt really have a DR right now who is guiding his through things. Does anyone have experience with this situation? Any DRs you could recommend contacting? He can go anywhere for treatment but lives near tampa  and also in ohio. 

      thanks so much,

      Naomi

    Viewing 5 reply threads
    • Replies
        kylez
        Participant

          Hi Naomi,

          I don't have any experience with the melanoma in an immunosuppressed state.

          Tampa does have a very well regarded, NCI-designated cancer center of excellence, in the Moffitt Cancer Center and Research Institute. Dr. Jeff Weber from Moffitt is often mentioned (as someone to see) by patients of his on this board. See: 

          http://www.cancer.gov/researchandfunding/extramural/cancercenters/find-a-cancer-center/moffitt

          Best of luck, Kyle

          kylez
          Participant

            Hi Naomi,

            I don't have any experience with the melanoma in an immunosuppressed state.

            Tampa does have a very well regarded, NCI-designated cancer center of excellence, in the Moffitt Cancer Center and Research Institute. Dr. Jeff Weber from Moffitt is often mentioned (as someone to see) by patients of his on this board. See: 

            http://www.cancer.gov/researchandfunding/extramural/cancercenters/find-a-cancer-center/moffitt

            Best of luck, Kyle

              nsabel
              Participant

                Kyle– thanks so much

                nsabel
                Participant

                  Kyle– thanks so much

                  nsabel
                  Participant

                    Kyle– thanks so much

                  kylez
                  Participant

                    Hi Naomi,

                    I don't have any experience with the melanoma in an immunosuppressed state.

                    Tampa does have a very well regarded, NCI-designated cancer center of excellence, in the Moffitt Cancer Center and Research Institute. Dr. Jeff Weber from Moffitt is often mentioned (as someone to see) by patients of his on this board. See: 

                    http://www.cancer.gov/researchandfunding/extramural/cancercenters/find-a-cancer-center/moffitt

                    Best of luck, Kyle

                    Swanee
                    Participant

                      Hi Naomi,

                      Sorry your father has been diagnosed with melanoma.  I am glad you found this board, it can be a real life saver and is a great source of comfort, answers, love and support.  

                      Right after my diagnosis a friend dropped a book off to me called "the anti-cancer  – A new way of life" book (excellent for anyone undergoing cancer) and in one of the chapters they talk about someone getting an organ transplant and the patient receiving the transplant who developed melanoma from the donor, even though the donor's melanoma was 20 yrs. previous, not in an advanced stage at all and donor was declared cured.  But because a transplant patient has to take so many immunosuppressed drugs in order to receive the transplant it can bring to life dormant melanoma cells.  This might all be related to the transplant and I would suggest to investigate that possibility.  Reading that story has opened my mind to the tenacious personality of this disease and how it survives beyond death,  it is truly a stubborn cancer that doesn't go away.

                      This is just a small tidbit of information but I hope it helps you in your journey with this melanoma battle.  Stay in touch and report your progress.  I think their are a lot of great melanoma treatment centers in Tampa, Florida……so good luck!

                      Best wishes as you love and support your father through this melanoma maze!

                      Swanee 

                      Swanee
                      Participant

                        Hi Naomi,

                        Sorry your father has been diagnosed with melanoma.  I am glad you found this board, it can be a real life saver and is a great source of comfort, answers, love and support.  

                        Right after my diagnosis a friend dropped a book off to me called "the anti-cancer  – A new way of life" book (excellent for anyone undergoing cancer) and in one of the chapters they talk about someone getting an organ transplant and the patient receiving the transplant who developed melanoma from the donor, even though the donor's melanoma was 20 yrs. previous, not in an advanced stage at all and donor was declared cured.  But because a transplant patient has to take so many immunosuppressed drugs in order to receive the transplant it can bring to life dormant melanoma cells.  This might all be related to the transplant and I would suggest to investigate that possibility.  Reading that story has opened my mind to the tenacious personality of this disease and how it survives beyond death,  it is truly a stubborn cancer that doesn't go away.

                        This is just a small tidbit of information but I hope it helps you in your journey with this melanoma battle.  Stay in touch and report your progress.  I think their are a lot of great melanoma treatment centers in Tampa, Florida……so good luck!

                        Best wishes as you love and support your father through this melanoma maze!

                        Swanee 

                          JC
                          Participant

                            So is what this book is saying is that melanoma never really is gone on anyone?  So even folks who had very early thin lesions that were 95% curable with WLE. .they are really never rid of the cancer, that is lies dormant in everyone who ever had it, and it's just a matter of if it comes out of dormancy or not? 

                            JC
                            Participant

                              So is what this book is saying is that melanoma never really is gone on anyone?  So even folks who had very early thin lesions that were 95% curable with WLE. .they are really never rid of the cancer, that is lies dormant in everyone who ever had it, and it's just a matter of if it comes out of dormancy or not? 

                              Swanee
                              Participant

                                To Anonymous,

                                You would have to read this section of the book, I can't go into detail here.  The donor that I was referring to, all or most of the recipients of her organs, ended up with melanoma and many of the patients had the transplanted organ removed, some stopped their immunopressive drugs or some died.  Cancer cells live in all of us and it is our immune system that keeps them in check.  Melanoma seems to have a strong connection with our immune system and I think that is why it doesn't respond well to chemotherapy and is more successfully treated  with immunotherapy.  I'm not saying melanoma lives dormant in everyone who has had it but I know it's likely with us,  (if we've had it)  and it's our immune system that keeps in under control.  

                                The book I am referring to is written by a doctor who had cancer, David Servan-Schreiber and is a must read for everyone……especially those who don't have cancer because it really emphasizes a healthy lifestyle.  It's not particular to any one cancer it is just a general overview of the whole situation.  Hope you can find a copy and read, you won't be disappointed!

                                Swanee

                                Swanee
                                Participant

                                  To Anonymous,

                                  You would have to read this section of the book, I can't go into detail here.  The donor that I was referring to, all or most of the recipients of her organs, ended up with melanoma and many of the patients had the transplanted organ removed, some stopped their immunopressive drugs or some died.  Cancer cells live in all of us and it is our immune system that keeps them in check.  Melanoma seems to have a strong connection with our immune system and I think that is why it doesn't respond well to chemotherapy and is more successfully treated  with immunotherapy.  I'm not saying melanoma lives dormant in everyone who has had it but I know it's likely with us,  (if we've had it)  and it's our immune system that keeps in under control.  

                                  The book I am referring to is written by a doctor who had cancer, David Servan-Schreiber and is a must read for everyone……especially those who don't have cancer because it really emphasizes a healthy lifestyle.  It's not particular to any one cancer it is just a general overview of the whole situation.  Hope you can find a copy and read, you won't be disappointed!

                                  Swanee

                                  Swanee
                                  Participant

                                    To Anonymous,

                                    You would have to read this section of the book, I can't go into detail here.  The donor that I was referring to, all or most of the recipients of her organs, ended up with melanoma and many of the patients had the transplanted organ removed, some stopped their immunopressive drugs or some died.  Cancer cells live in all of us and it is our immune system that keeps them in check.  Melanoma seems to have a strong connection with our immune system and I think that is why it doesn't respond well to chemotherapy and is more successfully treated  with immunotherapy.  I'm not saying melanoma lives dormant in everyone who has had it but I know it's likely with us,  (if we've had it)  and it's our immune system that keeps in under control.  

                                    The book I am referring to is written by a doctor who had cancer, David Servan-Schreiber and is a must read for everyone……especially those who don't have cancer because it really emphasizes a healthy lifestyle.  It's not particular to any one cancer it is just a general overview of the whole situation.  Hope you can find a copy and read, you won't be disappointed!

                                    Swanee

                                    JC
                                    Participant

                                      So is what this book is saying is that melanoma never really is gone on anyone?  So even folks who had very early thin lesions that were 95% curable with WLE. .they are really never rid of the cancer, that is lies dormant in everyone who ever had it, and it's just a matter of if it comes out of dormancy or not? 

                                      nsabel
                                      Participant

                                        Swanee– I will definitely check out the book. 

                                        thanks,

                                        Naomi

                                        nsabel
                                        Participant

                                          Swanee– I will definitely check out the book. 

                                          thanks,

                                          Naomi

                                          nsabel
                                          Participant

                                            Swanee– I will definitely check out the book. 

                                            thanks,

                                            Naomi

                                          Swanee
                                          Participant

                                            Hi Naomi,

                                            Sorry your father has been diagnosed with melanoma.  I am glad you found this board, it can be a real life saver and is a great source of comfort, answers, love and support.  

                                            Right after my diagnosis a friend dropped a book off to me called "the anti-cancer  – A new way of life" book (excellent for anyone undergoing cancer) and in one of the chapters they talk about someone getting an organ transplant and the patient receiving the transplant who developed melanoma from the donor, even though the donor's melanoma was 20 yrs. previous, not in an advanced stage at all and donor was declared cured.  But because a transplant patient has to take so many immunosuppressed drugs in order to receive the transplant it can bring to life dormant melanoma cells.  This might all be related to the transplant and I would suggest to investigate that possibility.  Reading that story has opened my mind to the tenacious personality of this disease and how it survives beyond death,  it is truly a stubborn cancer that doesn't go away.

                                            This is just a small tidbit of information but I hope it helps you in your journey with this melanoma battle.  Stay in touch and report your progress.  I think their are a lot of great melanoma treatment centers in Tampa, Florida……so good luck!

                                            Best wishes as you love and support your father through this melanoma maze!

                                            Swanee 

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