› Forums › General Melanoma Community › just found out BRAF negative.,what options if Ippi fails?
- This topic has 60 replies, 11 voices, and was last updated 10 years, 6 months ago by
JerryfromFauq.
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- February 18, 2012 at 12:25 am
I just found out that I am BRAF negative..I am very upset. I started IPPI on Monday. I need to have a Plan B in case the Ippi fails. I am one of those people that just seeem to take the one day at a time approach to life.. even though I know that I should. What options are out there for me..clinical trials..or are there treatments.. I doubt that I would be able to withstand the IL2 treatment..for many reasons.Any advise would be appreciated.
Joan
I just found out that I am BRAF negative..I am very upset. I started IPPI on Monday. I need to have a Plan B in case the Ippi fails. I am one of those people that just seeem to take the one day at a time approach to life.. even though I know that I should. What options are out there for me..clinical trials..or are there treatments.. I doubt that I would be able to withstand the IL2 treatment..for many reasons.Any advise would be appreciated.
Joan
- Replies
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- February 18, 2012 at 1:50 am
I don't know either since I am Braf negative also and this is one of the questions I need to ask my doctor on Monday. There is interferon but that is a tough one, I did it for the whole month last year and it was hard on me but everyone is differant. How are you doing now, still no side effects? I was told by my Melanoma Oncologist that IL2 would not be an option for me because of my age, I am 68 so I guess I was too old for that treatment. Hope you get some answers.
yoopergirl
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- February 18, 2012 at 2:16 am
Still no side effects..but I just had my treatment on Monday..I assume that it is still to early for side effects. You are just a spring chicken.. I would love to be 68 again..it's funny how your perspective changes as you grow old..isn't it? I don't believe age is a factor in the IL2 tratment.. but at 81 and having other medical issues..I doubt that I could handle a treatment that has such serious side effects. Going out of town for treatment would also be difficult as well..I do have a son in the DC area..and I could stay with him if their were trials at Hopkins or NIH that would be appropriate. I will see my doctor when I go for Ippy # 2 March 8 and certainly discuss any options open to me if the Ippy fails.. I just to have a plan B in place for my own piece of mind. How are you doing? I hope that you get answers as well and post them..You are just ahead of me so I am especially interested
Joan
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- February 18, 2012 at 3:25 am
My mother is braf negative and c-kit negative with mucosal melanoma. There are other options for you like anti-pd1, anti-pd1L, some MEK combination trials, Leukine. You should see if you have the c-kit mutation because then you have gleevec. Also you can test for I believe HLA2 (I think that's what it is) Dr Weber at Moffitt in Tampa has a clinical trial a vacine and anti-pd1. You can test for the NARS mutation. Even though we are braf negative we still have options. You can also look in the TIL treatment, IL2 with other combinations.
There are so many wonderful people on this site that are so informed on what is the lastest and best treatment options and where to go. I don't know what I would do without this site. I have learned more then I could ever imagine about melanoma.
My Mother did Yervoy and was stable for 9 months. Things just started to progress a little so we just started a reinduction of Yervoy. Our Dr told us they have seen good results wiith reinduction and she was a responder the first time. I just wish the absolute best for you and my Mom and everyone fighting melanoma.
Warm regards,
Wendy
P.S. My Mom didn't start showing side effects of Yervoy until her 2nd treatment. She had the rash and itch. 3rd treatment very bad mouth sores ( very rare for people) Lots of Vitiligo across her chest and arms. Everyone responders differntly. I have seen people with no side effects and respond beautifully.
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- February 18, 2012 at 3:25 am
My mother is braf negative and c-kit negative with mucosal melanoma. There are other options for you like anti-pd1, anti-pd1L, some MEK combination trials, Leukine. You should see if you have the c-kit mutation because then you have gleevec. Also you can test for I believe HLA2 (I think that's what it is) Dr Weber at Moffitt in Tampa has a clinical trial a vacine and anti-pd1. You can test for the NARS mutation. Even though we are braf negative we still have options. You can also look in the TIL treatment, IL2 with other combinations.
There are so many wonderful people on this site that are so informed on what is the lastest and best treatment options and where to go. I don't know what I would do without this site. I have learned more then I could ever imagine about melanoma.
My Mother did Yervoy and was stable for 9 months. Things just started to progress a little so we just started a reinduction of Yervoy. Our Dr told us they have seen good results wiith reinduction and she was a responder the first time. I just wish the absolute best for you and my Mom and everyone fighting melanoma.
Warm regards,
Wendy
P.S. My Mom didn't start showing side effects of Yervoy until her 2nd treatment. She had the rash and itch. 3rd treatment very bad mouth sores ( very rare for people) Lots of Vitiligo across her chest and arms. Everyone responders differntly. I have seen people with no side effects and respond beautifully.
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- February 18, 2012 at 8:26 pm
Thank you Wendy for all of the infomation. This website has been a Godsend to me..so much infomation! At this time so many treatments seem to difficult for me to handle at my age and health such as IL-2 or TIL. That is why I started on the Ippi..while there may be many side effects.. I think that I can deal with them. The other treatment for Pan B for me I think would be the PD-1 the side effects are mild.. it is a matter of where I could go for a trial..living away from home would be difdficult..the expense alone would not be something that I could afford. I do have a Son in the DC area.. so any trial there maybe Hopkins or NIH.also a daughter in the San Fransisco Bay area..might work out..so I would have to find a trial.. I would love to go to Tampa to Moffit..but I would have no place to stay. Thanks for filling me in on your Mother's side effects How well did she deal with the side effects..does she love alone? How is she doing on the Yervoy reinduction? I wish her well
Joan
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- February 18, 2012 at 8:26 pm
Thank you Wendy for all of the infomation. This website has been a Godsend to me..so much infomation! At this time so many treatments seem to difficult for me to handle at my age and health such as IL-2 or TIL. That is why I started on the Ippi..while there may be many side effects.. I think that I can deal with them. The other treatment for Pan B for me I think would be the PD-1 the side effects are mild.. it is a matter of where I could go for a trial..living away from home would be difdficult..the expense alone would not be something that I could afford. I do have a Son in the DC area.. so any trial there maybe Hopkins or NIH.also a daughter in the San Fransisco Bay area..might work out..so I would have to find a trial.. I would love to go to Tampa to Moffit..but I would have no place to stay. Thanks for filling me in on your Mother's side effects How well did she deal with the side effects..does she love alone? How is she doing on the Yervoy reinduction? I wish her well
Joan
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- February 18, 2012 at 8:26 pm
Thank you Wendy for all of the infomation. This website has been a Godsend to me..so much infomation! At this time so many treatments seem to difficult for me to handle at my age and health such as IL-2 or TIL. That is why I started on the Ippi..while there may be many side effects.. I think that I can deal with them. The other treatment for Pan B for me I think would be the PD-1 the side effects are mild.. it is a matter of where I could go for a trial..living away from home would be difdficult..the expense alone would not be something that I could afford. I do have a Son in the DC area.. so any trial there maybe Hopkins or NIH.also a daughter in the San Fransisco Bay area..might work out..so I would have to find a trial.. I would love to go to Tampa to Moffit..but I would have no place to stay. Thanks for filling me in on your Mother's side effects How well did she deal with the side effects..does she love alone? How is she doing on the Yervoy reinduction? I wish her well
Joan
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- October 12, 2013 at 8:19 pm
Wendy, just saw your comments. My mither also has mucosal melonoma and has had four treatments of yarvoy. So far, tumor is shrinking significantly and we will know more in next months per scan. She is being treated at NYU by Dr Pavlick. We think the dr and her staff are wonderful! Did the reinduction work?
Sincerely,
Martha Alvarez -
- October 12, 2013 at 8:19 pm
Wendy, just saw your comments. My mither also has mucosal melonoma and has had four treatments of yarvoy. So far, tumor is shrinking significantly and we will know more in next months per scan. She is being treated at NYU by Dr Pavlick. We think the dr and her staff are wonderful! Did the reinduction work?
Sincerely,
Martha Alvarez -
- October 12, 2013 at 8:19 pm
Wendy, just saw your comments. My mither also has mucosal melonoma and has had four treatments of yarvoy. So far, tumor is shrinking significantly and we will know more in next months per scan. She is being treated at NYU by Dr Pavlick. We think the dr and her staff are wonderful! Did the reinduction work?
Sincerely,
Martha Alvarez -
- February 18, 2012 at 3:25 am
My mother is braf negative and c-kit negative with mucosal melanoma. There are other options for you like anti-pd1, anti-pd1L, some MEK combination trials, Leukine. You should see if you have the c-kit mutation because then you have gleevec. Also you can test for I believe HLA2 (I think that's what it is) Dr Weber at Moffitt in Tampa has a clinical trial a vacine and anti-pd1. You can test for the NARS mutation. Even though we are braf negative we still have options. You can also look in the TIL treatment, IL2 with other combinations.
There are so many wonderful people on this site that are so informed on what is the lastest and best treatment options and where to go. I don't know what I would do without this site. I have learned more then I could ever imagine about melanoma.
My Mother did Yervoy and was stable for 9 months. Things just started to progress a little so we just started a reinduction of Yervoy. Our Dr told us they have seen good results wiith reinduction and she was a responder the first time. I just wish the absolute best for you and my Mom and everyone fighting melanoma.
Warm regards,
Wendy
P.S. My Mom didn't start showing side effects of Yervoy until her 2nd treatment. She had the rash and itch. 3rd treatment very bad mouth sores ( very rare for people) Lots of Vitiligo across her chest and arms. Everyone responders differntly. I have seen people with no side effects and respond beautifully.
-
- February 18, 2012 at 2:16 am
Still no side effects..but I just had my treatment on Monday..I assume that it is still to early for side effects. You are just a spring chicken.. I would love to be 68 again..it's funny how your perspective changes as you grow old..isn't it? I don't believe age is a factor in the IL2 tratment.. but at 81 and having other medical issues..I doubt that I could handle a treatment that has such serious side effects. Going out of town for treatment would also be difficult as well..I do have a son in the DC area..and I could stay with him if their were trials at Hopkins or NIH that would be appropriate. I will see my doctor when I go for Ippy # 2 March 8 and certainly discuss any options open to me if the Ippy fails.. I just to have a plan B in place for my own piece of mind. How are you doing? I hope that you get answers as well and post them..You are just ahead of me so I am especially interested
Joan
-
- February 18, 2012 at 2:16 am
Still no side effects..but I just had my treatment on Monday..I assume that it is still to early for side effects. You are just a spring chicken.. I would love to be 68 again..it's funny how your perspective changes as you grow old..isn't it? I don't believe age is a factor in the IL2 tratment.. but at 81 and having other medical issues..I doubt that I could handle a treatment that has such serious side effects. Going out of town for treatment would also be difficult as well..I do have a son in the DC area..and I could stay with him if their were trials at Hopkins or NIH that would be appropriate. I will see my doctor when I go for Ippy # 2 March 8 and certainly discuss any options open to me if the Ippy fails.. I just to have a plan B in place for my own piece of mind. How are you doing? I hope that you get answers as well and post them..You are just ahead of me so I am especially interested
Joan
-
- February 18, 2012 at 1:50 am
I don't know either since I am Braf negative also and this is one of the questions I need to ask my doctor on Monday. There is interferon but that is a tough one, I did it for the whole month last year and it was hard on me but everyone is differant. How are you doing now, still no side effects? I was told by my Melanoma Oncologist that IL2 would not be an option for me because of my age, I am 68 so I guess I was too old for that treatment. Hope you get some answers.
yoopergirl
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- February 18, 2012 at 1:50 am
I don't know either since I am Braf negative also and this is one of the questions I need to ask my doctor on Monday. There is interferon but that is a tough one, I did it for the whole month last year and it was hard on me but everyone is differant. How are you doing now, still no side effects? I was told by my Melanoma Oncologist that IL2 would not be an option for me because of my age, I am 68 so I guess I was too old for that treatment. Hope you get some answers.
yoopergirl
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- February 18, 2012 at 5:18 am
Joan, I'm "wild type" for BRAF (no V600e/k mutation). My tumor has had more sequencing done than BRAF though. They found I have an NRAS mutation, one that has just begun being targeted in a few brand new trials. So you might ask if they've sequenced your tumor for other mutations besides BRAF, andif not, can they. It may open up a few clinical trial opportunities for you.
Anti-PD1 is one clinical trial choice for non-BRAF-mutated types for sure. And in a few months (June) it will be an especially interesting time for anti-PD1 for sure, with ASCO.
A new first-in-human trial at NIH is IL-15, which was highlighted a recent NCI Cancer Bulletin: "…immunotherapy experts participating in the NCI Immunotherapy Agent Workshop in 2007 ranked IL-15 as the most important agent to bring to clinical trials. Researchers have been waiting a long time for clinical grade IL-15, but pharmaceutical companies have largely gotten out of the business of producing new cytokines following some early clinical disappointments [with immunotherapy]," said Dr. Conlon. "So, NCI has invested in developing and producing the agent through its Developmental Therapeutics Program to allow clinical testing of this very highly anticipated cytokine to proceed." It was ranked higher (#1) than anti-PD1 (#2) at that workshop. http://clinicaltrials.gov/ct2/show/NCT01021059 The description mentions inpatient treatment for 12 days at NIH. Just because it's an "IL-" treatment doesn't mean it's as arduous as IL-2, if it sounds interesting you should ask NIH about that.
So that's a few choices. There's more out there too than I've mentioned.
-
- February 18, 2012 at 5:18 am
Joan, I'm "wild type" for BRAF (no V600e/k mutation). My tumor has had more sequencing done than BRAF though. They found I have an NRAS mutation, one that has just begun being targeted in a few brand new trials. So you might ask if they've sequenced your tumor for other mutations besides BRAF, andif not, can they. It may open up a few clinical trial opportunities for you.
Anti-PD1 is one clinical trial choice for non-BRAF-mutated types for sure. And in a few months (June) it will be an especially interesting time for anti-PD1 for sure, with ASCO.
A new first-in-human trial at NIH is IL-15, which was highlighted a recent NCI Cancer Bulletin: "…immunotherapy experts participating in the NCI Immunotherapy Agent Workshop in 2007 ranked IL-15 as the most important agent to bring to clinical trials. Researchers have been waiting a long time for clinical grade IL-15, but pharmaceutical companies have largely gotten out of the business of producing new cytokines following some early clinical disappointments [with immunotherapy]," said Dr. Conlon. "So, NCI has invested in developing and producing the agent through its Developmental Therapeutics Program to allow clinical testing of this very highly anticipated cytokine to proceed." It was ranked higher (#1) than anti-PD1 (#2) at that workshop. http://clinicaltrials.gov/ct2/show/NCT01021059 The description mentions inpatient treatment for 12 days at NIH. Just because it's an "IL-" treatment doesn't mean it's as arduous as IL-2, if it sounds interesting you should ask NIH about that.
So that's a few choices. There's more out there too than I've mentioned.
-
- February 18, 2012 at 8:37 pm
Thank you Kyle for all the infomation.. I have so much new terminology to learn..it boggles my mind. I wll have to discusschecking out what other mutations I have with my doctor and see if they can submit more samples from my lung biopsy for testing. I really think that the easiest treatment for me would be the PD-I ..but as I wrote above to Wendy.. I would need to find a trial in the DC area..or in the Bay area.. I have a daughter who lives in El Cerrito and a Son in Maryland..anywheres else would not work. At 81.. I need to be as gentle to my body as possible..but I still need to fight as hard as I can.
Joan -
- February 18, 2012 at 9:05 pm
Hi Joan,
I am Braf negative and I did yervoy a year ago and am a COMPLETE RESPONDER!! One year NED as of February 2012.
Its good to have a plan B and maybe Plan C and yes it is good to learn this new cancer language and specifically melanoma language. People had some good suggestions for you.
Dont give up hope on the Ipi!
Vermont_Donna, stage 3a, NED
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- February 18, 2012 at 9:05 pm
Hi Joan,
I am Braf negative and I did yervoy a year ago and am a COMPLETE RESPONDER!! One year NED as of February 2012.
Its good to have a plan B and maybe Plan C and yes it is good to learn this new cancer language and specifically melanoma language. People had some good suggestions for you.
Dont give up hope on the Ipi!
Vermont_Donna, stage 3a, NED
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- February 19, 2012 at 1:21 am
Oh Donna ..my 3 favorite letters NED!! that is just wonderful. I am so happy that the Ippi worked for you. Were you on any other treatment? Yeah.. I am basically a control freak and like to have backup plans.. I am just kore comfortable have a plan B,C, D E etc…but I really don't see all that many options there for me..considering all the factors that I already posted about.. but I am sure open to all ideas and suggestions from all of you guys who have had experience navigating this disease. Again.. I am so happy for you
Joan
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- February 19, 2012 at 1:45 pm
Hi Joan,
I did do many other treatments….interferon, leukine isolated limb perfusion….look at my profile, ok??
Vermont_Donna
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- February 19, 2012 at 1:45 pm
Hi Joan,
I did do many other treatments….interferon, leukine isolated limb perfusion….look at my profile, ok??
Vermont_Donna
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- February 19, 2012 at 1:45 pm
Hi Joan,
I did do many other treatments….interferon, leukine isolated limb perfusion….look at my profile, ok??
Vermont_Donna
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- February 19, 2012 at 1:21 am
Oh Donna ..my 3 favorite letters NED!! that is just wonderful. I am so happy that the Ippi worked for you. Were you on any other treatment? Yeah.. I am basically a control freak and like to have backup plans.. I am just kore comfortable have a plan B,C, D E etc…but I really don't see all that many options there for me..considering all the factors that I already posted about.. but I am sure open to all ideas and suggestions from all of you guys who have had experience navigating this disease. Again.. I am so happy for you
Joan
-
- February 19, 2012 at 1:21 am
Oh Donna ..my 3 favorite letters NED!! that is just wonderful. I am so happy that the Ippi worked for you. Were you on any other treatment? Yeah.. I am basically a control freak and like to have backup plans.. I am just kore comfortable have a plan B,C, D E etc…but I really don't see all that many options there for me..considering all the factors that I already posted about.. but I am sure open to all ideas and suggestions from all of you guys who have had experience navigating this disease. Again.. I am so happy for you
Joan
-
- February 18, 2012 at 9:05 pm
Hi Joan,
I am Braf negative and I did yervoy a year ago and am a COMPLETE RESPONDER!! One year NED as of February 2012.
Its good to have a plan B and maybe Plan C and yes it is good to learn this new cancer language and specifically melanoma language. People had some good suggestions for you.
Dont give up hope on the Ipi!
Vermont_Donna, stage 3a, NED
-
- February 19, 2012 at 4:46 am
Joan, there is a new Merck Anti pd1 trial starting this month at UCSF in SF just across the bridge from El Cerrito. You can call Brandon Cortez, clinical trial coordinator for Dr. Adil Daud and Dr. Aligazi. They are located at the Helen Diller Cancer Center at 1600 Divisadero St. I start March 12. take care and God Bless. Robert
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- February 19, 2012 at 4:46 am
Joan, there is a new Merck Anti pd1 trial starting this month at UCSF in SF just across the bridge from El Cerrito. You can call Brandon Cortez, clinical trial coordinator for Dr. Adil Daud and Dr. Aligazi. They are located at the Helen Diller Cancer Center at 1600 Divisadero St. I start March 12. take care and God Bless. Robert
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- February 19, 2012 at 4:46 am
Joan, there is a new Merck Anti pd1 trial starting this month at UCSF in SF just across the bridge from El Cerrito. You can call Brandon Cortez, clinical trial coordinator for Dr. Adil Daud and Dr. Aligazi. They are located at the Helen Diller Cancer Center at 1600 Divisadero St. I start March 12. take care and God Bless. Robert
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- February 19, 2012 at 10:48 pm
Thanks Robert..coming out to the West coast..would be doable for me and a trial of PD=1 would be the way I would like to go, I think. I just started my Ippi Treatments last Monday.. and it will be a long time before I would know if it works..probably not until May or June so this would be a backup plan..do you think that the Trial would still be open to me by then if the Ippy fails.I have no idea how these things work..since I have never had prior experience with Melonama. I was just diagnosed with stage 1V with no history of skin lesions and no primary site..so all this is very new. Thank you for your help.
Joan
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- February 19, 2012 at 10:48 pm
Thanks Robert..coming out to the West coast..would be doable for me and a trial of PD=1 would be the way I would like to go, I think. I just started my Ippi Treatments last Monday.. and it will be a long time before I would know if it works..probably not until May or June so this would be a backup plan..do you think that the Trial would still be open to me by then if the Ippy fails.I have no idea how these things work..since I have never had prior experience with Melonama. I was just diagnosed with stage 1V with no history of skin lesions and no primary site..so all this is very new. Thank you for your help.
Joan
-
- February 19, 2012 at 10:48 pm
Thanks Robert..coming out to the West coast..would be doable for me and a trial of PD=1 would be the way I would like to go, I think. I just started my Ippi Treatments last Monday.. and it will be a long time before I would know if it works..probably not until May or June so this would be a backup plan..do you think that the Trial would still be open to me by then if the Ippy fails.I have no idea how these things work..since I have never had prior experience with Melonama. I was just diagnosed with stage 1V with no history of skin lesions and no primary site..so all this is very new. Thank you for your help.
Joan
-
- February 18, 2012 at 8:37 pm
Thank you Kyle for all the infomation.. I have so much new terminology to learn..it boggles my mind. I wll have to discusschecking out what other mutations I have with my doctor and see if they can submit more samples from my lung biopsy for testing. I really think that the easiest treatment for me would be the PD-I ..but as I wrote above to Wendy.. I would need to find a trial in the DC area..or in the Bay area.. I have a daughter who lives in El Cerrito and a Son in Maryland..anywheres else would not work. At 81.. I need to be as gentle to my body as possible..but I still need to fight as hard as I can.
Joan -
- February 18, 2012 at 8:37 pm
Thank you Kyle for all the infomation.. I have so much new terminology to learn..it boggles my mind. I wll have to discusschecking out what other mutations I have with my doctor and see if they can submit more samples from my lung biopsy for testing. I really think that the easiest treatment for me would be the PD-I ..but as I wrote above to Wendy.. I would need to find a trial in the DC area..or in the Bay area.. I have a daughter who lives in El Cerrito and a Son in Maryland..anywheres else would not work. At 81.. I need to be as gentle to my body as possible..but I still need to fight as hard as I can.
Joan -
- February 19, 2012 at 7:00 am
My dermatologist mentioned that for the NRAS-mutated patients like me at the clinic, they're looking forward to getting a new trial from GSK that's a combination Pi3K/MEK inhibitor, possibly this one.
Also, this web site lists 4 possible trials for melanoma/NRAS (click on the 'Trials' tab to see them). The trial drugs are ARQ 736; a Sanofi-Aventis MEK/Pi3K combo; a Novartis MEK/RAF265 combo; and a Novartis MEK single agent. It don't list the GSK MEK/Pi3K combo trial (but probably should?)
My NRAS mutation is G12A.
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- February 19, 2012 at 7:00 am
My dermatologist mentioned that for the NRAS-mutated patients like me at the clinic, they're looking forward to getting a new trial from GSK that's a combination Pi3K/MEK inhibitor, possibly this one.
Also, this web site lists 4 possible trials for melanoma/NRAS (click on the 'Trials' tab to see them). The trial drugs are ARQ 736; a Sanofi-Aventis MEK/Pi3K combo; a Novartis MEK/RAF265 combo; and a Novartis MEK single agent. It don't list the GSK MEK/Pi3K combo trial (but probably should?)
My NRAS mutation is G12A.
-
- February 19, 2012 at 7:00 am
My dermatologist mentioned that for the NRAS-mutated patients like me at the clinic, they're looking forward to getting a new trial from GSK that's a combination Pi3K/MEK inhibitor, possibly this one.
Also, this web site lists 4 possible trials for melanoma/NRAS (click on the 'Trials' tab to see them). The trial drugs are ARQ 736; a Sanofi-Aventis MEK/Pi3K combo; a Novartis MEK/RAF265 combo; and a Novartis MEK single agent. It don't list the GSK MEK/Pi3K combo trial (but probably should?)
My NRAS mutation is G12A.
-
- February 19, 2012 at 11:05 pm
Kyle.. thanks for the info.. I have no idea what other mutations I might have..cetainly my poor doctor is going to spend more time with me on my next visit to go over the many questions that I will have for her.The GSK trial, probably wouldn't work as since I have Diabetes and that is a exclusion. I sure hope the Ippy works for me..but I do need a plan B..just in case..all the waiting to hear gives me some time to educate myself and make some plans. This forum is wonderful!!
Joan
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- February 19, 2012 at 11:05 pm
Kyle.. thanks for the info.. I have no idea what other mutations I might have..cetainly my poor doctor is going to spend more time with me on my next visit to go over the many questions that I will have for her.The GSK trial, probably wouldn't work as since I have Diabetes and that is a exclusion. I sure hope the Ippy works for me..but I do need a plan B..just in case..all the waiting to hear gives me some time to educate myself and make some plans. This forum is wonderful!!
Joan
-
- February 19, 2012 at 11:05 pm
Kyle.. thanks for the info.. I have no idea what other mutations I might have..cetainly my poor doctor is going to spend more time with me on my next visit to go over the many questions that I will have for her.The GSK trial, probably wouldn't work as since I have Diabetes and that is a exclusion. I sure hope the Ippy works for me..but I do need a plan B..just in case..all the waiting to hear gives me some time to educate myself and make some plans. This forum is wonderful!!
Joan
-
- February 18, 2012 at 5:18 am
Joan, I'm "wild type" for BRAF (no V600e/k mutation). My tumor has had more sequencing done than BRAF though. They found I have an NRAS mutation, one that has just begun being targeted in a few brand new trials. So you might ask if they've sequenced your tumor for other mutations besides BRAF, andif not, can they. It may open up a few clinical trial opportunities for you.
Anti-PD1 is one clinical trial choice for non-BRAF-mutated types for sure. And in a few months (June) it will be an especially interesting time for anti-PD1 for sure, with ASCO.
A new first-in-human trial at NIH is IL-15, which was highlighted a recent NCI Cancer Bulletin: "…immunotherapy experts participating in the NCI Immunotherapy Agent Workshop in 2007 ranked IL-15 as the most important agent to bring to clinical trials. Researchers have been waiting a long time for clinical grade IL-15, but pharmaceutical companies have largely gotten out of the business of producing new cytokines following some early clinical disappointments [with immunotherapy]," said Dr. Conlon. "So, NCI has invested in developing and producing the agent through its Developmental Therapeutics Program to allow clinical testing of this very highly anticipated cytokine to proceed." It was ranked higher (#1) than anti-PD1 (#2) at that workshop. http://clinicaltrials.gov/ct2/show/NCT01021059 The description mentions inpatient treatment for 12 days at NIH. Just because it's an "IL-" treatment doesn't mean it's as arduous as IL-2, if it sounds interesting you should ask NIH about that.
So that's a few choices. There's more out there too than I've mentioned.
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- February 20, 2012 at 7:30 am
There is an anti pd 1/vaccine trial ( MDX 1106) at Moffitt ( actually 2 trials) They are the same except mine excludes previous Yervoy use and is for NED folks…the other is for those not NED and has the 4,5,6th arms that allow for previous use of Yervoy….
March 26 is my 2nd year NED…stage 4
Phase I Pilot Study of Peptide Vaccine Comprising gp100:209-217(210M), MART-1:26-35(27L), gp100:280-288(288V), and NY-ESO-1 Emulsified in Montanide ISA 51 VG and Anti-PD-1 Human Monoclonal Antibody MDX-1106 in Patients With Unresectable Stage III or IV Melanoma
Has anyone heard anything about how the Merck anti pd 1 is doing? I have heard from a guy who is on it and has continued to progress and he said his onc is saying they are noticing this more and more. I am still looking for a positive response from someone ( I used to work for Merck :o) )
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- February 20, 2012 at 7:30 am
There is an anti pd 1/vaccine trial ( MDX 1106) at Moffitt ( actually 2 trials) They are the same except mine excludes previous Yervoy use and is for NED folks…the other is for those not NED and has the 4,5,6th arms that allow for previous use of Yervoy….
March 26 is my 2nd year NED…stage 4
Phase I Pilot Study of Peptide Vaccine Comprising gp100:209-217(210M), MART-1:26-35(27L), gp100:280-288(288V), and NY-ESO-1 Emulsified in Montanide ISA 51 VG and Anti-PD-1 Human Monoclonal Antibody MDX-1106 in Patients With Unresectable Stage III or IV Melanoma
Has anyone heard anything about how the Merck anti pd 1 is doing? I have heard from a guy who is on it and has continued to progress and he said his onc is saying they are noticing this more and more. I am still looking for a positive response from someone ( I used to work for Merck :o) )
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- February 20, 2012 at 7:30 am
There is an anti pd 1/vaccine trial ( MDX 1106) at Moffitt ( actually 2 trials) They are the same except mine excludes previous Yervoy use and is for NED folks…the other is for those not NED and has the 4,5,6th arms that allow for previous use of Yervoy….
March 26 is my 2nd year NED…stage 4
Phase I Pilot Study of Peptide Vaccine Comprising gp100:209-217(210M), MART-1:26-35(27L), gp100:280-288(288V), and NY-ESO-1 Emulsified in Montanide ISA 51 VG and Anti-PD-1 Human Monoclonal Antibody MDX-1106 in Patients With Unresectable Stage III or IV Melanoma
Has anyone heard anything about how the Merck anti pd 1 is doing? I have heard from a guy who is on it and has continued to progress and he said his onc is saying they are noticing this more and more. I am still looking for a positive response from someone ( I used to work for Merck :o) )
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- January 29, 2013 at 4:50 pm
Are there any treatment options after radiation for a patient who is BRAF Neg. Stage IV with brain metastasis?
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- January 29, 2013 at 6:43 pm
My brother's oncologist at Moffitt Medical Center said that Yervoy (ipi) does work on brain mets. Current thinking is that while the ipi itself does not cross the blood-brain barrier, activated T-cells from elsewhere in the body do get into the brain and attack the melanoma. I do not know how long it takes for this to happen (faster or slower than non-CNS tumors) or if it is as effective in the brain as in the rest of the body. But apparently ipi (and presumably the other immune-based treatments like anti-PD1) does work on brain tumors. By the way, my brother's oncologist recommended a combination of ipi and temodar (a standard chemo that does cross the blood-brain barrier).
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- January 29, 2013 at 6:43 pm
My brother's oncologist at Moffitt Medical Center said that Yervoy (ipi) does work on brain mets. Current thinking is that while the ipi itself does not cross the blood-brain barrier, activated T-cells from elsewhere in the body do get into the brain and attack the melanoma. I do not know how long it takes for this to happen (faster or slower than non-CNS tumors) or if it is as effective in the brain as in the rest of the body. But apparently ipi (and presumably the other immune-based treatments like anti-PD1) does work on brain tumors. By the way, my brother's oncologist recommended a combination of ipi and temodar (a standard chemo that does cross the blood-brain barrier).
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- January 29, 2013 at 6:43 pm
My brother's oncologist at Moffitt Medical Center said that Yervoy (ipi) does work on brain mets. Current thinking is that while the ipi itself does not cross the blood-brain barrier, activated T-cells from elsewhere in the body do get into the brain and attack the melanoma. I do not know how long it takes for this to happen (faster or slower than non-CNS tumors) or if it is as effective in the brain as in the rest of the body. But apparently ipi (and presumably the other immune-based treatments like anti-PD1) does work on brain tumors. By the way, my brother's oncologist recommended a combination of ipi and temodar (a standard chemo that does cross the blood-brain barrier).
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- October 14, 2013 at 4:44 am
UVA at Charlottesville, Has a PD-1 trial. About 70 miles south of DC. Contact Dr. Craig Slingluff. He is an outstanding Melanoma Specialist, researcher, Surgeon and a very caring person. He saved my life by going outside of normal procedures to make sure I received Great expedited Care.
http://clinicaltrials.gov/show/NCT01621490
United States, Virginia University Of Virginia Health System Recruiting Charlottesville, Virginia, United States, 22908 Contact: Craig Slingluff, Site 0004 434-982-3101
United States, Maryland Sidney Kimmel Comprehensive Cancer Center At Johns Hopkins Recruiting Lutherville, Maryland, United States, 21093 Contact: William Sharfman, Site 0005 410-955-0009 **************************************************************************************************
I don't know if your Melanoma Oncologist is a IL-2 Specialist or not. I will provide you with two contacts that are Great with IL-2, having over 30 years experience with administering it. The will not recommend it if they do not believe one can take the treatment after they do extensive testing. They are both the Head of their Universities Hematology/Oncology Departments They have very experienced staffs for the IL-2 treatment.
Geoffrey R Weiss, [email protected] 800-251-3627/434-243-0066 UVA
Michael Atkins Georgetown Univ/Lombardi Comprehensive Cancer Ctr
http://contact.georgetown.edu/mail/ enter name then click "Send email to this user"
or Lombardi Director's Office: (202) 687-2110
If I can find where I mis-laid Atkins card, I will add his email address to.
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- October 14, 2013 at 4:44 am
UVA at Charlottesville, Has a PD-1 trial. About 70 miles south of DC. Contact Dr. Craig Slingluff. He is an outstanding Melanoma Specialist, researcher, Surgeon and a very caring person. He saved my life by going outside of normal procedures to make sure I received Great expedited Care.
http://clinicaltrials.gov/show/NCT01621490
United States, Virginia University Of Virginia Health System Recruiting Charlottesville, Virginia, United States, 22908 Contact: Craig Slingluff, Site 0004 434-982-3101
United States, Maryland Sidney Kimmel Comprehensive Cancer Center At Johns Hopkins Recruiting Lutherville, Maryland, United States, 21093 Contact: William Sharfman, Site 0005 410-955-0009 **************************************************************************************************
I don't know if your Melanoma Oncologist is a IL-2 Specialist or not. I will provide you with two contacts that are Great with IL-2, having over 30 years experience with administering it. The will not recommend it if they do not believe one can take the treatment after they do extensive testing. They are both the Head of their Universities Hematology/Oncology Departments They have very experienced staffs for the IL-2 treatment.
Geoffrey R Weiss, [email protected] 800-251-3627/434-243-0066 UVA
Michael Atkins Georgetown Univ/Lombardi Comprehensive Cancer Ctr
http://contact.georgetown.edu/mail/ enter name then click "Send email to this user"
or Lombardi Director's Office: (202) 687-2110
If I can find where I mis-laid Atkins card, I will add his email address to.
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- October 14, 2013 at 4:44 am
UVA at Charlottesville, Has a PD-1 trial. About 70 miles south of DC. Contact Dr. Craig Slingluff. He is an outstanding Melanoma Specialist, researcher, Surgeon and a very caring person. He saved my life by going outside of normal procedures to make sure I received Great expedited Care.
http://clinicaltrials.gov/show/NCT01621490
United States, Virginia University Of Virginia Health System Recruiting Charlottesville, Virginia, United States, 22908 Contact: Craig Slingluff, Site 0004 434-982-3101
United States, Maryland Sidney Kimmel Comprehensive Cancer Center At Johns Hopkins Recruiting Lutherville, Maryland, United States, 21093 Contact: William Sharfman, Site 0005 410-955-0009 **************************************************************************************************
I don't know if your Melanoma Oncologist is a IL-2 Specialist or not. I will provide you with two contacts that are Great with IL-2, having over 30 years experience with administering it. The will not recommend it if they do not believe one can take the treatment after they do extensive testing. They are both the Head of their Universities Hematology/Oncology Departments They have very experienced staffs for the IL-2 treatment.
Geoffrey R Weiss, [email protected] 800-251-3627/434-243-0066 UVA
Michael Atkins Georgetown Univ/Lombardi Comprehensive Cancer Ctr
http://contact.georgetown.edu/mail/ enter name then click "Send email to this user"
or Lombardi Director's Office: (202) 687-2110
If I can find where I mis-laid Atkins card, I will add his email address to.
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