› Forums › Mucosal Melanoma Community › Question about Braf Negative for Jimmy B if you can answer)
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WendyPam.
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- February 20, 2012 at 5:00 pm
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
- Replies
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- February 20, 2012 at 5:47 pm
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.
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- February 20, 2012 at 7:04 pm
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?
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- February 21, 2012 at 12:00 pm
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
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- February 21, 2012 at 12:00 pm
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
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- February 21, 2012 at 12:00 pm
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
-
- February 20, 2012 at 7:04 pm
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?
-
- February 20, 2012 at 7:04 pm
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?
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- February 21, 2012 at 3:39 am
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.
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- February 21, 2012 at 5:16 pm
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++++++++++++++++++++++++++++++++
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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- February 21, 2012 at 5:16 pm
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++++++++++++++++++++++++++++++++
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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- February 21, 2012 at 11:50 pm
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
-
- February 21, 2012 at 11:50 pm
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
-
- February 21, 2012 at 11:50 pm
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
-
- February 21, 2012 at 5:16 pm
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++++++++++++++++++++++++++++++++
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
Tagged: mucosal melanoma
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