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Question about Braf Negative for Jimmy B if you can answer)

Forums Mucosal Melanoma Community Question about Braf Negative for Jimmy B if you can answer)

  • Post
    WendyPam
    Participant

      My Mother is Braf negative as well as C-kit negative. She has mucosal melanoma. She just started a reinduction of Yervoy and has her second treatment tomorrow. We are seeing a melanoma specialist in Miami, FL – Dr. Jose Lutsky. My Mom is going on 3 years with this melanoma. Here is a little about her history.

       

      History:  69 yrs old – Primary vulva melanoma braf negative, c-kit negative and negative for ny-eso-1

      Yervoy first round stable for 9 month. Recent recurance and moved to spleen.

      My Mother is Braf negative as well as C-kit negative. She has mucosal melanoma. She just started a reinduction of Yervoy and has her second treatment tomorrow. We are seeing a melanoma specialist in Miami, FL – Dr. Jose Lutsky. My Mom is going on 3 years with this melanoma. Here is a little about her history.

       

      History:  69 yrs old – Primary vulva melanoma braf negative, c-kit negative and negative for ny-eso-1

      Yervoy first round stable for 9 month. Recent recurance and moved to spleen.

      10/17/2011 large FDG avid  mass gastric antrum 34×36 mm suv=8.6, FDG localization nodule lateral left mid lung pleural based 12mm suv=8.6, at least 4 left lung nodules only the largest of which is fdg avid

      1/16/2012  gastric antrum 46x45mm suv=10.5, lateral apect spleen isodense 31mm suv=6.4 w/multiple persispnin hilar nodes 28mm suv=9.6 and 11mm suv=5.1, active pleural base nodule lateral left lung lingula 25mm suv=17.3, adjacent satellite 10mm suv=3.1, large left upper quadrant mass 44x34mm suv=14.0 brain mri – clear

      Being that she is beaf and c-kit negative would she be negative for HLA2 or NARS mutations? She I push to have her tested? I need help with a plan B and C. Other then melanoma she is in good shape. Should we look into TIL for her? Take her to Moffitt or Sloan. Any advise would be greatly appreciated.

      Thank you!

      Wendy

    Viewing 8 reply threads
    • Replies
        MeNDave
        Participant

          Hi Wendy,

          I know that Jimmy B will have more info, but I thought I would let you know that being B-RAF and C-KIT negative does not mean that she would be negative for other mutations.   

          MeNDave
          Participant

            Hi Wendy,

            I know that Jimmy B will have more info, but I thought I would let you know that being B-RAF and C-KIT negative does not mean that she would be negative for other mutations.   

            MeNDave
            Participant

              Hi Wendy,

              I know that Jimmy B will have more info, but I thought I would let you know that being B-RAF and C-KIT negative does not mean that she would be negative for other mutations.   

                WendyPam
                Participant

                  Thank you so much for letting me know that. I love our doctor and plan to go to a lecture through AIM that is going on in Miami Feb 25th that our doctor is speaking at. This is another question that I would like to know. Our doctor is a melanoma specialist however he does treat other cancers. Does that make him a specialist or just someone that treat melanoma with expertise in that area?

                  WendyPam
                  Participant

                    Thank you so much for letting me know that. I love our doctor and plan to go to a lecture through AIM that is going on in Miami Feb 25th that our doctor is speaking at. This is another question that I would like to know. Our doctor is a melanoma specialist however he does treat other cancers. Does that make him a specialist or just someone that treat melanoma with expertise in that area?

                    WendyPam
                    Participant

                      Thank you so much for letting me know that. I love our doctor and plan to go to a lecture through AIM that is going on in Miami Feb 25th that our doctor is speaking at. This is another question that I would like to know. Our doctor is a melanoma specialist however he does treat other cancers. Does that make him a specialist or just someone that treat melanoma with expertise in that area?

                      MeNDave
                      Participant

                        Hi Wendy,

                        I'm not really sure, as Dave's oncologist is also a specialist in GIST (gastrointestinal tumors).  His last one also specialized in kidney cancer as well.   I think that many oncologists are knowledgeable in other cancers as well, with specific specialties.  I'm sure that in the larger hospitals you may find oncs that only do melanoma, given the patient demand.  The most important thing is to find one that is putting all the options on the board.  If you mention a treatment that they have never heard of (but is well known in the mel community) it's probably time to find anothe onc.

                        I hope that all goes well for the both of you.  Best wishes,

                        Maria

                        MeNDave
                        Participant

                          Hi Wendy,

                          I'm not really sure, as Dave's oncologist is also a specialist in GIST (gastrointestinal tumors).  His last one also specialized in kidney cancer as well.   I think that many oncologists are knowledgeable in other cancers as well, with specific specialties.  I'm sure that in the larger hospitals you may find oncs that only do melanoma, given the patient demand.  The most important thing is to find one that is putting all the options on the board.  If you mention a treatment that they have never heard of (but is well known in the mel community) it's probably time to find anothe onc.

                          I hope that all goes well for the both of you.  Best wishes,

                          Maria

                          MeNDave
                          Participant

                            Hi Wendy,

                            I'm not really sure, as Dave's oncologist is also a specialist in GIST (gastrointestinal tumors).  His last one also specialized in kidney cancer as well.   I think that many oncologists are knowledgeable in other cancers as well, with specific specialties.  I'm sure that in the larger hospitals you may find oncs that only do melanoma, given the patient demand.  The most important thing is to find one that is putting all the options on the board.  If you mention a treatment that they have never heard of (but is well known in the mel community) it's probably time to find anothe onc.

                            I hope that all goes well for the both of you.  Best wishes,

                            Maria

                          LynnLuc
                          Participant

                            NO…HLA has nothing to do with B raf mutations. My friend is B raf neg but is  HLA-A 0201-positive and she is on a sister trial of mine…she is on anti pd 1 ( MDX 1106) and peptides and doing fine.

                            LynnLuc
                            Participant

                              NO…HLA has nothing to do with B raf mutations. My friend is B raf neg but is  HLA-A 0201-positive and she is on a sister trial of mine…she is on anti pd 1 ( MDX 1106) and peptides and doing fine.

                                LynnLuc
                                Participant

                                  PS we go to Moffitt…I have Dr Weber and she has another doc.

                                  LynnLuc
                                  Participant

                                    PS we go to Moffitt…I have Dr Weber and she has another doc.

                                    LynnLuc
                                    Participant

                                      PS we go to Moffitt…I have Dr Weber and she has another doc.

                                    LynnLuc
                                    Participant

                                      NO…HLA has nothing to do with B raf mutations. My friend is B raf neg but is  HLA-A 0201-positive and she is on a sister trial of mine…she is on anti pd 1 ( MDX 1106) and peptides and doing fine.

                                      jim Breitfeller
                                      Participant

                                        Wendy,

                                        I am sorry that your mother is having a rough time.

                                         

                                        In 2002  in a meeting with the FDA about IFN:

                                        "DR. LUTZKY: Morning. My name is Jose Lutzky, and I'm the Director of the Melanoma Multi-disciplinary Program at Mt. Sinai Cancer Center in Miami Beach, Florida.

                                        Our center sees over 200 new melanoma patients a year, and we are involved in several clinical trials encompassing all stages of melanoma. I received research funding from Immunex, Celgene, and Chiron Pharmaceuticals. I'm a member of the Immunex Speakers Bureau, and I have conceived this statement individually and without participation or notification of any pharmaceutical company.

                                        I have paid for this trip from my personal funds.

                                        High dose interferon is considered by the FDA as the standard of care for patients with Stage IIB3 melanoma. I will not dispute this point today.

                                        I would like, however, to point out that survival data is of borderline significance in that 145 months of follow-up, the survival of the interferon treated group in ECOG 1684 is no longer statistically different from the observation group.

                                        While life threatening and irreversible toxicity is uncommon with this treatment, most patients experience prolonged, debilitating side effects, such as fatigue, anorexia, weight loss, and depression.

                                        In my clinical practice, 60 percent of which consists of patients with melanoma, I discuss the data on adjuvant high dose interferon with all patients at high risk for recurrence. About 50 percent of these patients will proceed to receive the standard of care. The other half will elect not to be treated with interferon."

                                         

                                        As you can see the Oncologists have to follow protocol.

                                        I think your mother sould be test for any mutations. This way you can rule out some therapies or clinical trials that don't fit your mother's situation. With Yervoy therapy, it has been seen that the T-cells upregulate the PD-1 receptors. This in turn can lead to T-cell exhaustion which shuts down the immune response along with the T-cell actiavtion. I would think a better therapy would be a combination of Yervoy + Anti-PD-1. Your may have to travel where they are conducting that trial. Try to get into the BMS trial which is at Yale or Sloan Kettering. Dr. Sznol is at Yale or Dr. Wolchok is at Kettering.

                                        Mario Sznol, MD

                                         Schedule an Appointment

                                        (203) 785-4191 – Appointment Phone
                                        (203) 785-3788 – Appointment Fax
                                        (203) 785-6221 – Office Phone

                                        [email protected]

                                        ++++++++++++++++++++++++++++++++

                                        Jedd D. Wolchok, MD, PhD
                                        Director, Immunotherapy Clinical Trials, Dept of Medicine
                                         

                                        Associate Attending Physician, Melanoma-Sarcoma Service
                                        Associate Director, LudwigCenterfor Cancer Immunotherapy
                                        Memorial Sloan-Kettering Cancer Center
                                        1275 York Avenue, Room Z-1462
                                        New York, NY 10021
                                        Phone: +1 646 888 2395
                                        e-mail: [email protected]

                                         

                                        Your mother should be tested for her HLA type. If she is HLA-02 +, it will open up a lot more clinical trials that include

                                        dendritic cell vaccines.

                                         

                                        Please keep us posted.

                                         

                                        Jimmy B

                                        jim Breitfeller
                                        Participant

                                          Wendy,

                                          I am sorry that your mother is having a rough time.

                                           

                                          In 2002  in a meeting with the FDA about IFN:

                                          "DR. LUTZKY: Morning. My name is Jose Lutzky, and I'm the Director of the Melanoma Multi-disciplinary Program at Mt. Sinai Cancer Center in Miami Beach, Florida.

                                          Our center sees over 200 new melanoma patients a year, and we are involved in several clinical trials encompassing all stages of melanoma. I received research funding from Immunex, Celgene, and Chiron Pharmaceuticals. I'm a member of the Immunex Speakers Bureau, and I have conceived this statement individually and without participation or notification of any pharmaceutical company.

                                          I have paid for this trip from my personal funds.

                                          High dose interferon is considered by the FDA as the standard of care for patients with Stage IIB3 melanoma. I will not dispute this point today.

                                          I would like, however, to point out that survival data is of borderline significance in that 145 months of follow-up, the survival of the interferon treated group in ECOG 1684 is no longer statistically different from the observation group.

                                          While life threatening and irreversible toxicity is uncommon with this treatment, most patients experience prolonged, debilitating side effects, such as fatigue, anorexia, weight loss, and depression.

                                          In my clinical practice, 60 percent of which consists of patients with melanoma, I discuss the data on adjuvant high dose interferon with all patients at high risk for recurrence. About 50 percent of these patients will proceed to receive the standard of care. The other half will elect not to be treated with interferon."

                                           

                                          As you can see the Oncologists have to follow protocol.

                                          I think your mother sould be test for any mutations. This way you can rule out some therapies or clinical trials that don't fit your mother's situation. With Yervoy therapy, it has been seen that the T-cells upregulate the PD-1 receptors. This in turn can lead to T-cell exhaustion which shuts down the immune response along with the T-cell actiavtion. I would think a better therapy would be a combination of Yervoy + Anti-PD-1. Your may have to travel where they are conducting that trial. Try to get into the BMS trial which is at Yale or Sloan Kettering. Dr. Sznol is at Yale or Dr. Wolchok is at Kettering.

                                          Mario Sznol, MD

                                           Schedule an Appointment

                                          (203) 785-4191 – Appointment Phone
                                          (203) 785-3788 – Appointment Fax
                                          (203) 785-6221 – Office Phone

                                          [email protected]

                                          ++++++++++++++++++++++++++++++++

                                          Jedd D. Wolchok, MD, PhD
                                          Director, Immunotherapy Clinical Trials, Dept of Medicine
                                           

                                          Associate Attending Physician, Melanoma-Sarcoma Service
                                          Associate Director, LudwigCenterfor Cancer Immunotherapy
                                          Memorial Sloan-Kettering Cancer Center
                                          1275 York Avenue, Room Z-1462
                                          New York, NY 10021
                                          Phone: +1 646 888 2395
                                          e-mail: [email protected]

                                           

                                          Your mother should be tested for her HLA type. If she is HLA-02 +, it will open up a lot more clinical trials that include

                                          dendritic cell vaccines.

                                           

                                          Please keep us posted.

                                           

                                          Jimmy B

                                            WendyPam
                                            Participant

                                              Hi Jimmy,

                                              Thank you so much for all of your information that  you shared with me. Well, my Mom just had her second reinduction of Yervoy today. I asked Dt. Lutzky when he thought Anti-pd1 was coming to his center and he said around April. I ask which pharmaceutical company and he told me and now I can't remember which one. I know that it is none of the once that everyone is talking about, BMS, Merck, etc…. This one I never heard about. He did mention that they will be having Anti-pd1L.

                                              At our next appointment I am going to ask to have her tested for the HLA type. Being that she started a reinduction of Yervoy that would not allow us to do a Yervoy – Antipd1 combo. In saying that if after the Yervoy reinduction maybe get her into an Anti-pd1 and that would maybe somewhat of a combo.

                                              Dr. Lutsky said if we need Anti-pl1 and his clinic doesn't have it at that time he would send us to Tampa. We live in Ft. Lauderdale. I know my Mom would want to go to  Sloan. Thank you so much for sharing all of the information that you do.

                                              Thanks!

                                              Wendy

                                              WendyPam
                                              Participant

                                                Hi Jimmy,

                                                Thank you so much for all of your information that  you shared with me. Well, my Mom just had her second reinduction of Yervoy today. I asked Dt. Lutzky when he thought Anti-pd1 was coming to his center and he said around April. I ask which pharmaceutical company and he told me and now I can't remember which one. I know that it is none of the once that everyone is talking about, BMS, Merck, etc…. This one I never heard about. He did mention that they will be having Anti-pd1L.

                                                At our next appointment I am going to ask to have her tested for the HLA type. Being that she started a reinduction of Yervoy that would not allow us to do a Yervoy – Antipd1 combo. In saying that if after the Yervoy reinduction maybe get her into an Anti-pd1 and that would maybe somewhat of a combo.

                                                Dr. Lutsky said if we need Anti-pl1 and his clinic doesn't have it at that time he would send us to Tampa. We live in Ft. Lauderdale. I know my Mom would want to go to  Sloan. Thank you so much for sharing all of the information that you do.

                                                Thanks!

                                                Wendy

                                                WendyPam
                                                Participant

                                                  Hi Jimmy,

                                                  Thank you so much for all of your information that  you shared with me. Well, my Mom just had her second reinduction of Yervoy today. I asked Dt. Lutzky when he thought Anti-pd1 was coming to his center and he said around April. I ask which pharmaceutical company and he told me and now I can't remember which one. I know that it is none of the once that everyone is talking about, BMS, Merck, etc…. This one I never heard about. He did mention that they will be having Anti-pd1L.

                                                  At our next appointment I am going to ask to have her tested for the HLA type. Being that she started a reinduction of Yervoy that would not allow us to do a Yervoy – Antipd1 combo. In saying that if after the Yervoy reinduction maybe get her into an Anti-pd1 and that would maybe somewhat of a combo.

                                                  Dr. Lutsky said if we need Anti-pl1 and his clinic doesn't have it at that time he would send us to Tampa. We live in Ft. Lauderdale. I know my Mom would want to go to  Sloan. Thank you so much for sharing all of the information that you do.

                                                  Thanks!

                                                  Wendy

                                                jim Breitfeller
                                                Participant

                                                  Wendy,

                                                  I am sorry that your mother is having a rough time.

                                                   

                                                  In 2002  in a meeting with the FDA about IFN:

                                                  "DR. LUTZKY: Morning. My name is Jose Lutzky, and I'm the Director of the Melanoma Multi-disciplinary Program at Mt. Sinai Cancer Center in Miami Beach, Florida.

                                                  Our center sees over 200 new melanoma patients a year, and we are involved in several clinical trials encompassing all stages of melanoma. I received research funding from Immunex, Celgene, and Chiron Pharmaceuticals. I'm a member of the Immunex Speakers Bureau, and I have conceived this statement individually and without participation or notification of any pharmaceutical company.

                                                  I have paid for this trip from my personal funds.

                                                  High dose interferon is considered by the FDA as the standard of care for patients with Stage IIB3 melanoma. I will not dispute this point today.

                                                  I would like, however, to point out that survival data is of borderline significance in that 145 months of follow-up, the survival of the interferon treated group in ECOG 1684 is no longer statistically different from the observation group.

                                                  While life threatening and irreversible toxicity is uncommon with this treatment, most patients experience prolonged, debilitating side effects, such as fatigue, anorexia, weight loss, and depression.

                                                  In my clinical practice, 60 percent of which consists of patients with melanoma, I discuss the data on adjuvant high dose interferon with all patients at high risk for recurrence. About 50 percent of these patients will proceed to receive the standard of care. The other half will elect not to be treated with interferon."

                                                   

                                                  As you can see the Oncologists have to follow protocol.

                                                  I think your mother sould be test for any mutations. This way you can rule out some therapies or clinical trials that don't fit your mother's situation. With Yervoy therapy, it has been seen that the T-cells upregulate the PD-1 receptors. This in turn can lead to T-cell exhaustion which shuts down the immune response along with the T-cell actiavtion. I would think a better therapy would be a combination of Yervoy + Anti-PD-1. Your may have to travel where they are conducting that trial. Try to get into the BMS trial which is at Yale or Sloan Kettering. Dr. Sznol is at Yale or Dr. Wolchok is at Kettering.

                                                  Mario Sznol, MD

                                                   Schedule an Appointment

                                                  (203) 785-4191 – Appointment Phone
                                                  (203) 785-3788 – Appointment Fax
                                                  (203) 785-6221 – Office Phone

                                                  [email protected]

                                                  ++++++++++++++++++++++++++++++++

                                                  Jedd D. Wolchok, MD, PhD
                                                  Director, Immunotherapy Clinical Trials, Dept of Medicine
                                                   

                                                  Associate Attending Physician, Melanoma-Sarcoma Service
                                                  Associate Director, LudwigCenterfor Cancer Immunotherapy
                                                  Memorial Sloan-Kettering Cancer Center
                                                  1275 York Avenue, Room Z-1462
                                                  New York, NY 10021
                                                  Phone: +1 646 888 2395
                                                  e-mail: [email protected]

                                                   

                                                  Your mother should be tested for her HLA type. If she is HLA-02 +, it will open up a lot more clinical trials that include

                                                  dendritic cell vaccines.

                                                   

                                                  Please keep us posted.

                                                   

                                                  Jimmy B

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