› Forums › General Melanoma Community › Yervoy not working, what next?
- This topic has 21 replies, 4 voices, and was last updated 13 years, 2 months ago by
JerryfromFauq.
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- November 17, 2012 at 2:58 pm
My mother was diagnosed with metastic melanoma this past summer with 3 lesions on her liver and possible lung spots. She had her fourth and final yervoy treatment last week and at that time the doctor said the tumor in her liver had continued to grow. It has definitely grown during treatment. Instead of waiting 3 weeks after final yervoy treatment for scans we’ve moved scans up a week, in a few days. I’m looking for ideas, thoughts about what is next if yervoy hasn’t worked. Surgery is not an option. Wondering if radiation would shrink tumor in liver. Any help is most welcome!My mother was diagnosed with metastic melanoma this past summer with 3 lesions on her liver and possible lung spots. She had her fourth and final yervoy treatment last week and at that time the doctor said the tumor in her liver had continued to grow. It has definitely grown during treatment. Instead of waiting 3 weeks after final yervoy treatment for scans we’ve moved scans up a week, in a few days. I’m looking for ideas, thoughts about what is next if yervoy hasn’t worked. Surgery is not an option. Wondering if radiation would shrink tumor in liver. Any help is most welcome!
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- November 17, 2012 at 4:01 pm
Most likely your mother is not producing the "Danger Signal" need to activate the innate immune system. Radiation may help by killing the outer cancer cells of the tumor and producting Tumor-Specific Antigens. She also needs to break the tolerance of the T- regulator cells (Tregs) and the suppressive cytokines that are produced in the tumor's Microenvirnoment..
Please email me so we can talk off line and see what can be done in your mother's situation.
P.S. I don't want to go into too much detail online because it may confuse you and other followers. I would need more information on your mother's situation to be able to make an educated path forward.
If you feel uncomfortable about talking, check out my previous posts here at MRF or check out Melanoma Missionary blog
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- November 17, 2012 at 4:01 pm
Most likely your mother is not producing the "Danger Signal" need to activate the innate immune system. Radiation may help by killing the outer cancer cells of the tumor and producting Tumor-Specific Antigens. She also needs to break the tolerance of the T- regulator cells (Tregs) and the suppressive cytokines that are produced in the tumor's Microenvirnoment..
Please email me so we can talk off line and see what can be done in your mother's situation.
P.S. I don't want to go into too much detail online because it may confuse you and other followers. I would need more information on your mother's situation to be able to make an educated path forward.
If you feel uncomfortable about talking, check out my previous posts here at MRF or check out Melanoma Missionary blog
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- November 17, 2012 at 4:01 pm
Most likely your mother is not producing the "Danger Signal" need to activate the innate immune system. Radiation may help by killing the outer cancer cells of the tumor and producting Tumor-Specific Antigens. She also needs to break the tolerance of the T- regulator cells (Tregs) and the suppressive cytokines that are produced in the tumor's Microenvirnoment..
Please email me so we can talk off line and see what can be done in your mother's situation.
P.S. I don't want to go into too much detail online because it may confuse you and other followers. I would need more information on your mother's situation to be able to make an educated path forward.
If you feel uncomfortable about talking, check out my previous posts here at MRF or check out Melanoma Missionary blog
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- November 17, 2012 at 5:08 pm
Unfortunately, Yervoy only works in about 15% of patients. I don't think anybody knows why. Has your mother's tumor been tested for the BRAF mutation? What treatment is your oncolgist recommending?
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- November 17, 2012 at 7:18 pm
Thanks for your reply! It was tested for BRAF mutation and she does not have it. So, I forget the name of the drug, but its not an option. I’m just getting involved in this and I wish I knew earlier that yervoy only works for 15%! We are meeting with oncologist next week to hear suggestions on what next. I want to be educated and prepared for that meeting. -
- November 17, 2012 at 7:18 pm
Thanks for your reply! It was tested for BRAF mutation and she does not have it. So, I forget the name of the drug, but its not an option. I’m just getting involved in this and I wish I knew earlier that yervoy only works for 15%! We are meeting with oncologist next week to hear suggestions on what next. I want to be educated and prepared for that meeting. -
- November 17, 2012 at 7:18 pm
Thanks for your reply! It was tested for BRAF mutation and she does not have it. So, I forget the name of the drug, but its not an option. I’m just getting involved in this and I wish I knew earlier that yervoy only works for 15%! We are meeting with oncologist next week to hear suggestions on what next. I want to be educated and prepared for that meeting.
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- November 17, 2012 at 6:06 pm
See my post called "Redirecting the Melanoma Tumor’s Microenvironment in Favor of the Activation of T-cells "
Posted on 3-15-2012
Best regards,
Jimmy B
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- November 17, 2012 at 7:36 pm
Thanks so much for your reply! I read your blog post and it sounds like radiation, anti-pd1 could be the next steps. How hard is it to get into those trials? She does not have BRAF mutation.Are anti-IL-10 and GAL-3 FDA approved? What kind of treatments are they?
Is something like RF Ablation ever done at this point when surgery is not an option?
Thanks so much!!
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- November 18, 2012 at 3:14 pm
Pauline,
Anti-IL-10 and GAL-3 are still in the early stages of the clinical trials. As for RF ablation, I am not aware of it being used.
Have you asked your oncologist about HD-IL-2 or Bio-Chemo? They are harsh therapies that may help, But the patient msut pass some stress tests to get approval.
Best regards,
Jimmy B
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- November 18, 2012 at 3:14 pm
Pauline,
Anti-IL-10 and GAL-3 are still in the early stages of the clinical trials. As for RF ablation, I am not aware of it being used.
Have you asked your oncologist about HD-IL-2 or Bio-Chemo? They are harsh therapies that may help, But the patient msut pass some stress tests to get approval.
Best regards,
Jimmy B
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- November 18, 2012 at 3:14 pm
Pauline,
Anti-IL-10 and GAL-3 are still in the early stages of the clinical trials. As for RF ablation, I am not aware of it being used.
Have you asked your oncologist about HD-IL-2 or Bio-Chemo? They are harsh therapies that may help, But the patient msut pass some stress tests to get approval.
Best regards,
Jimmy B
-
- November 17, 2012 at 7:36 pm
Thanks so much for your reply! I read your blog post and it sounds like radiation, anti-pd1 could be the next steps. How hard is it to get into those trials? She does not have BRAF mutation.Are anti-IL-10 and GAL-3 FDA approved? What kind of treatments are they?
Is something like RF Ablation ever done at this point when surgery is not an option?
Thanks so much!!
-
- November 17, 2012 at 7:36 pm
Thanks so much for your reply! I read your blog post and it sounds like radiation, anti-pd1 could be the next steps. How hard is it to get into those trials? She does not have BRAF mutation.Are anti-IL-10 and GAL-3 FDA approved? What kind of treatments are they?
Is something like RF Ablation ever done at this point when surgery is not an option?
Thanks so much!!
-
- November 17, 2012 at 6:06 pm
See my post called "Redirecting the Melanoma Tumor’s Microenvironment in Favor of the Activation of T-cells "
Posted on 3-15-2012
Best regards,
Jimmy B
-
- November 17, 2012 at 6:06 pm
See my post called "Redirecting the Melanoma Tumor’s Microenvironment in Favor of the Activation of T-cells "
Posted on 3-15-2012
Best regards,
Jimmy B
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- November 19, 2012 at 9:40 am
Don't be surprised by the 'Low " sound of only 15-20% of Yervoy (Ippi) helping melanoma patients. The only other treatment that has been in this ballpark is IL-2 which was approved in 1998. Most treatments of other things have trouble reaching a 1% helpful rate. IL-2 has provided what approaches a 5% "cure" rate in across the board melanoma patients, while providing a benefit to another 15% of across the board melanoma patients. A second drug to provide assistance in this range is a good step forward, while not being a solution for all. An interesting thing is that in many cases it appears that both Yervoy and IL-2 can help pump up ones system so that other treatments become more effective than they normally are if taken independently.
Jimmy B got very deep into analyzing why/how this may happen since it appears that his disease failed to the Yervoy treatments and then responded after IL-2 treatments. Jimmy did an amazing analysis of how this could happen and has impressed some well known Oncology researchers with his work of the timing of events that led to his becoming NED!
I would be comfortable with providing Jimmy any information available on myself to assist him in his analysis.
I have not had the Yervoy, but the IL-2 held my innumerable lung tumors essentially stable for 20 months before they started growing again. My Liver tumors have never started growing again and appear to likely be necrotic tissue (dead tumors). IL-2, while a tough treatment in the short term, provides a fairly rapid response if one is responding to it, and has a short recovery period from its side effects. It should definitely be an option on the table.
You do want to be sure that it is administered by a highly experienced IL-2 team. I know people that have had IL-2 as their only Stage IV treatment that have been NED (Cured?) for from 5 to 21 years as of now.
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- November 19, 2012 at 9:40 am
Don't be surprised by the 'Low " sound of only 15-20% of Yervoy (Ippi) helping melanoma patients. The only other treatment that has been in this ballpark is IL-2 which was approved in 1998. Most treatments of other things have trouble reaching a 1% helpful rate. IL-2 has provided what approaches a 5% "cure" rate in across the board melanoma patients, while providing a benefit to another 15% of across the board melanoma patients. A second drug to provide assistance in this range is a good step forward, while not being a solution for all. An interesting thing is that in many cases it appears that both Yervoy and IL-2 can help pump up ones system so that other treatments become more effective than they normally are if taken independently.
Jimmy B got very deep into analyzing why/how this may happen since it appears that his disease failed to the Yervoy treatments and then responded after IL-2 treatments. Jimmy did an amazing analysis of how this could happen and has impressed some well known Oncology researchers with his work of the timing of events that led to his becoming NED!
I would be comfortable with providing Jimmy any information available on myself to assist him in his analysis.
I have not had the Yervoy, but the IL-2 held my innumerable lung tumors essentially stable for 20 months before they started growing again. My Liver tumors have never started growing again and appear to likely be necrotic tissue (dead tumors). IL-2, while a tough treatment in the short term, provides a fairly rapid response if one is responding to it, and has a short recovery period from its side effects. It should definitely be an option on the table.
You do want to be sure that it is administered by a highly experienced IL-2 team. I know people that have had IL-2 as their only Stage IV treatment that have been NED (Cured?) for from 5 to 21 years as of now.
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- November 19, 2012 at 9:40 am
Don't be surprised by the 'Low " sound of only 15-20% of Yervoy (Ippi) helping melanoma patients. The only other treatment that has been in this ballpark is IL-2 which was approved in 1998. Most treatments of other things have trouble reaching a 1% helpful rate. IL-2 has provided what approaches a 5% "cure" rate in across the board melanoma patients, while providing a benefit to another 15% of across the board melanoma patients. A second drug to provide assistance in this range is a good step forward, while not being a solution for all. An interesting thing is that in many cases it appears that both Yervoy and IL-2 can help pump up ones system so that other treatments become more effective than they normally are if taken independently.
Jimmy B got very deep into analyzing why/how this may happen since it appears that his disease failed to the Yervoy treatments and then responded after IL-2 treatments. Jimmy did an amazing analysis of how this could happen and has impressed some well known Oncology researchers with his work of the timing of events that led to his becoming NED!
I would be comfortable with providing Jimmy any information available on myself to assist him in his analysis.
I have not had the Yervoy, but the IL-2 held my innumerable lung tumors essentially stable for 20 months before they started growing again. My Liver tumors have never started growing again and appear to likely be necrotic tissue (dead tumors). IL-2, while a tough treatment in the short term, provides a fairly rapid response if one is responding to it, and has a short recovery period from its side effects. It should definitely be an option on the table.
You do want to be sure that it is administered by a highly experienced IL-2 team. I know people that have had IL-2 as their only Stage IV treatment that have been NED (Cured?) for from 5 to 21 years as of now.
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