melanoma treatment options for someone on immunosuppression drugs after kidney transplant

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  • Post
    • December 3, 2012 at 8:19 pm
    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 14 reply threads
    • Replies
        • December 3, 2012 at 8:55 pm
        JC
        Participant

          I hear a lot on this board about H. Lee Moffitt Cancer Center in Tampa, Dr Jeffrey Weber is a melanoma specialist there

          • December 3, 2012 at 8:55 pm
          JC
          Participant

            I hear a lot on this board about H. Lee Moffitt Cancer Center in Tampa, Dr Jeffrey Weber is a melanoma specialist there

            • December 3, 2012 at 8:55 pm
            JC
            Participant

              I hear a lot on this board about H. Lee Moffitt Cancer Center in Tampa, Dr Jeffrey Weber is a melanoma specialist there

              • December 3, 2012 at 11:06 pm
              Tim–MRF
              Guest

                I am sorry to hear about your father.  This is the second question I have seen on treatment of immunosuppressed patients in the past few days.  As you can guess, it is a challenge.  

                I always recommend that patients with Stage IV melanoma see someone who is very familiar with melanoma.  This is particularly true in your father's case.

                As has been mentioned, Jeff Weber is a leading expert in melanoma.  And, he is very familiar with immunotherapy approaches to treatment.  This gives him extra experience in dealing with the immune system.  If he can't help your father he will refer out to someone else, or will caucus with other on the best course of action.  

                 

                Tim–MRF

                • December 3, 2012 at 11:06 pm
                Tim–MRF
                Guest

                  I am sorry to hear about your father.  This is the second question I have seen on treatment of immunosuppressed patients in the past few days.  As you can guess, it is a challenge.  

                  I always recommend that patients with Stage IV melanoma see someone who is very familiar with melanoma.  This is particularly true in your father's case.

                  As has been mentioned, Jeff Weber is a leading expert in melanoma.  And, he is very familiar with immunotherapy approaches to treatment.  This gives him extra experience in dealing with the immune system.  If he can't help your father he will refer out to someone else, or will caucus with other on the best course of action.  

                   

                  Tim–MRF

                    • December 4, 2012 at 5:38 pm
                    nsabel
                    Participant

                      Tim– thanks so much.

                      N

                      • December 4, 2012 at 5:38 pm
                      nsabel
                      Participant

                        Tim– thanks so much.

                        N

                        • December 4, 2012 at 5:38 pm
                        nsabel
                        Participant

                          Tim– thanks so much.

                          N

                        • December 3, 2012 at 11:06 pm
                        Tim–MRF
                        Guest

                          I am sorry to hear about your father.  This is the second question I have seen on treatment of immunosuppressed patients in the past few days.  As you can guess, it is a challenge.  

                          I always recommend that patients with Stage IV melanoma see someone who is very familiar with melanoma.  This is particularly true in your father's case.

                          As has been mentioned, Jeff Weber is a leading expert in melanoma.  And, he is very familiar with immunotherapy approaches to treatment.  This gives him extra experience in dealing with the immune system.  If he can't help your father he will refer out to someone else, or will caucus with other on the best course of action.  

                           

                          Tim–MRF

                          • December 4, 2012 at 12:15 am
                          jim Breitfeller
                          Participant

                            Naomi,

                            I am sorry to hear about your father's situation. His treatmentwould be very complicated. Since he is a transplant patient, he is given drugs to suppress the immune system so it won't reject his new kidney. On the other hand , you need to activate his immune system to go after the Melanoma.

                            One thing you might try is to get your Father tested for tumor mutations. (C-kit, Nras, Braf Etc.) hopefully he has the Braf or C-kit mutation because there are drugs available for those tumor types

                            As for melanoma Specialists:

                            Dr. Jeff Weber at the Moffit

                            Dr. Patrick Hwu At MD Anderson

                            Dr. John M. Kirkwood at the Hillman

                            Dr. Keith Flantery at MGH

                            Dr. Mario Snzol at Yale

                            Dr. Jedd D. Wolchok at Sloan Kettering

                            Dr. Cassian Yee at Seattle Cancer Care Alliance  

                            Dr. Steven A. Rosenberg at NCI

                            This is a set of Melanoma Specialists that I would consider.

                             

                            Best regards

                             

                            Jimmy b

                            • December 4, 2012 at 12:15 am
                            jim Breitfeller
                            Participant

                              Naomi,

                              I am sorry to hear about your father's situation. His treatmentwould be very complicated. Since he is a transplant patient, he is given drugs to suppress the immune system so it won't reject his new kidney. On the other hand , you need to activate his immune system to go after the Melanoma.

                              One thing you might try is to get your Father tested for tumor mutations. (C-kit, Nras, Braf Etc.) hopefully he has the Braf or C-kit mutation because there are drugs available for those tumor types

                              As for melanoma Specialists:

                              Dr. Jeff Weber at the Moffit

                              Dr. Patrick Hwu At MD Anderson

                              Dr. John M. Kirkwood at the Hillman

                              Dr. Keith Flantery at MGH

                              Dr. Mario Snzol at Yale

                              Dr. Jedd D. Wolchok at Sloan Kettering

                              Dr. Cassian Yee at Seattle Cancer Care Alliance  

                              Dr. Steven A. Rosenberg at NCI

                              This is a set of Melanoma Specialists that I would consider.

                               

                              Best regards

                               

                              Jimmy b

                                • December 4, 2012 at 5:45 pm
                                nsabel
                                Participant

                                  Jimmy– yes– thats exactly our dilemma regarding his immune system. thanks for the list and the tip on tumor mutations–both are incredibly helpful.

                                  thanks again, N

                                  • December 4, 2012 at 5:45 pm
                                  nsabel
                                  Participant

                                    Jimmy– yes– thats exactly our dilemma regarding his immune system. thanks for the list and the tip on tumor mutations–both are incredibly helpful.

                                    thanks again, N

                                    • December 4, 2012 at 5:45 pm
                                    nsabel
                                    Participant

                                      Jimmy– yes– thats exactly our dilemma regarding his immune system. thanks for the list and the tip on tumor mutations–both are incredibly helpful.

                                      thanks again, N

                                    • December 4, 2012 at 12:15 am
                                    jim Breitfeller
                                    Participant

                                      Naomi,

                                      I am sorry to hear about your father's situation. His treatmentwould be very complicated. Since he is a transplant patient, he is given drugs to suppress the immune system so it won't reject his new kidney. On the other hand , you need to activate his immune system to go after the Melanoma.

                                      One thing you might try is to get your Father tested for tumor mutations. (C-kit, Nras, Braf Etc.) hopefully he has the Braf or C-kit mutation because there are drugs available for those tumor types

                                      As for melanoma Specialists:

                                      Dr. Jeff Weber at the Moffit

                                      Dr. Patrick Hwu At MD Anderson

                                      Dr. John M. Kirkwood at the Hillman

                                      Dr. Keith Flantery at MGH

                                      Dr. Mario Snzol at Yale

                                      Dr. Jedd D. Wolchok at Sloan Kettering

                                      Dr. Cassian Yee at Seattle Cancer Care Alliance  

                                      Dr. Steven A. Rosenberg at NCI

                                      This is a set of Melanoma Specialists that I would consider.

                                       

                                      Best regards

                                       

                                      Jimmy b

                                      • December 4, 2012 at 1:31 am
                                      vivian
                                      Participant

                                        Naomi,

                                         I had a successful allogenic bone marrow transplant in 2002 for myelodysplasia, a bone marrow/blood cancer and was diagnosed  stage 3a melanoma in 2010.  I am now stage 4.  The difficulty for me is just as it is for your dad – must not do anything to reject the graft.  This is not a common situation, apparently.  I see an oncologist locally, but also Dr. Jedd Wolchok at Sloan-Kettering.  Since I know he is totally on top of my situation, I would recommend that you contact him for your father.  He is a lovely, caring, brilliant doctor, and his staff is exceptional.

                                        Best wishes to your dad,

                                        Lear

                                        • December 4, 2012 at 1:31 am
                                        vivian
                                        Participant

                                          Naomi,

                                           I had a successful allogenic bone marrow transplant in 2002 for myelodysplasia, a bone marrow/blood cancer and was diagnosed  stage 3a melanoma in 2010.  I am now stage 4.  The difficulty for me is just as it is for your dad – must not do anything to reject the graft.  This is not a common situation, apparently.  I see an oncologist locally, but also Dr. Jedd Wolchok at Sloan-Kettering.  Since I know he is totally on top of my situation, I would recommend that you contact him for your father.  He is a lovely, caring, brilliant doctor, and his staff is exceptional.

                                          Best wishes to your dad,

                                          Lear

                                            • December 5, 2012 at 1:53 am
                                            nsabel
                                            Participant

                                              Lear– thanks so much for the comment.  if you dont mind me asking, given your immune system issues- what types of treatment have been available to you? Are you able to take any of the immunotherapy drugs? 

                                              thanks again, 

                                              Naomi

                                              • December 5, 2012 at 1:53 am
                                              nsabel
                                              Participant

                                                Lear– thanks so much for the comment.  if you dont mind me asking, given your immune system issues- what types of treatment have been available to you? Are you able to take any of the immunotherapy drugs? 

                                                thanks again, 

                                                Naomi

                                                • December 5, 2012 at 1:53 am
                                                nsabel
                                                Participant

                                                  Lear– thanks so much for the comment.  if you dont mind me asking, given your immune system issues- what types of treatment have been available to you? Are you able to take any of the immunotherapy drugs? 

                                                  thanks again, 

                                                  Naomi

                                                • December 4, 2012 at 1:31 am
                                                vivian
                                                Participant

                                                  Naomi,

                                                   I had a successful allogenic bone marrow transplant in 2002 for myelodysplasia, a bone marrow/blood cancer and was diagnosed  stage 3a melanoma in 2010.  I am now stage 4.  The difficulty for me is just as it is for your dad – must not do anything to reject the graft.  This is not a common situation, apparently.  I see an oncologist locally, but also Dr. Jedd Wolchok at Sloan-Kettering.  Since I know he is totally on top of my situation, I would recommend that you contact him for your father.  He is a lovely, caring, brilliant doctor, and his staff is exceptional.

                                                  Best wishes to your dad,

                                                  Lear

                                                  • December 4, 2012 at 8:47 pm
                                                  audgator
                                                  Participant

                                                    Just returned from my 3-hour drive to Tampa & my appointments at Moffitt.  I can't imagine anyone living that close NOT going there. Dr. Weber is leading the trial I am on but my doctor is Kudchadkar.  Of course I know nothing about your special circumstance.  Best wishes.  Dan

                                                    • December 4, 2012 at 8:47 pm
                                                    audgator
                                                    Participant

                                                      Just returned from my 3-hour drive to Tampa & my appointments at Moffitt.  I can't imagine anyone living that close NOT going there. Dr. Weber is leading the trial I am on but my doctor is Kudchadkar.  Of course I know nothing about your special circumstance.  Best wishes.  Dan

                                                      • December 4, 2012 at 8:47 pm
                                                      audgator
                                                      Participant

                                                        Just returned from my 3-hour drive to Tampa & my appointments at Moffitt.  I can't imagine anyone living that close NOT going there. Dr. Weber is leading the trial I am on but my doctor is Kudchadkar.  Of course I know nothing about your special circumstance.  Best wishes.  Dan

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