› Forums › General Melanoma Community › Braf+…..What order?
- This topic has 21 replies, 6 voices, and was last updated 12 years, 10 months ago by
5374brian.
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- March 22, 2013 at 10:49 am
Hello,
When my husband was diagnosed back in 2010 things looked and felt so final. My husband goes for his
scans this Monday, if they are NED we have been blessed with 18 months clear from last recurrance.
With all the advances they have made in the last couple of years it seems now that the normal protocal seems
to be Zelboraf, Yervoy and then Anti-Pd1 in that order. With all the advances would you still try to push for a
Hello,
When my husband was diagnosed back in 2010 things looked and felt so final. My husband goes for his
scans this Monday, if they are NED we have been blessed with 18 months clear from last recurrance.
With all the advances they have made in the last couple of years it seems now that the normal protocal seems
to be Zelboraf, Yervoy and then Anti-Pd1 in that order. With all the advances would you still try to push for a
clinincal trial? Just trying to get a plan A, B + C. My husband is stage 3C. I know this question is asked endlessly
but I also know that there are alot of people who do ALOT of research.
Would love to hear some opinions….Thank-you
Jewel
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- March 22, 2013 at 1:58 pm
I'm not sure there really is an order, much depends on the disease location(s) and amount of disease. Anti-PD1 is in trials and so still an unknown (although promising). Yervoy takes more time to work so it typically used when there is less disease. Zelboraf (if BRAF positive) is used when there is a lot of disease to try and control things and maybe give you a chance at trying something else when/if it fails. IL-2 is tough but seems to have the best overall percentages of long term survivors, although that % is small. If you are a complete responder, you tend to have longer duration that most other treatments. If I had minimal disease, that would also be in my choice list.
My stage IV father with minimal disease has been offered Yervoy (he's not doing any treatments at age 88). He only would have been given Zelboraf if he had much more involvement. A treatment involving a BRAF and MEK inhibitor would probably be my choice over just a BRAF inhibitor alone. It's hard to know where Anti-PD1 fits in the mix. In addition, Anti-PD1 requires that you can find and get into a trial. Not all sites do trials or even have open slots. Most clinical trials do require better "health" scores. You need to be healthier to join them. You might have much more difficulty getting into a trial if things are very advanced. I'm not stage IV, only a caregiver for my father. But for me, the BRAF stuff would be last on my list. I'd try IL-2, Anti-PD1, Yervoy or any other promising clinical trial first if my disease wasn't widespread.
Just my thoughts,
Janner
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- March 22, 2013 at 1:58 pm
I'm not sure there really is an order, much depends on the disease location(s) and amount of disease. Anti-PD1 is in trials and so still an unknown (although promising). Yervoy takes more time to work so it typically used when there is less disease. Zelboraf (if BRAF positive) is used when there is a lot of disease to try and control things and maybe give you a chance at trying something else when/if it fails. IL-2 is tough but seems to have the best overall percentages of long term survivors, although that % is small. If you are a complete responder, you tend to have longer duration that most other treatments. If I had minimal disease, that would also be in my choice list.
My stage IV father with minimal disease has been offered Yervoy (he's not doing any treatments at age 88). He only would have been given Zelboraf if he had much more involvement. A treatment involving a BRAF and MEK inhibitor would probably be my choice over just a BRAF inhibitor alone. It's hard to know where Anti-PD1 fits in the mix. In addition, Anti-PD1 requires that you can find and get into a trial. Not all sites do trials or even have open slots. Most clinical trials do require better "health" scores. You need to be healthier to join them. You might have much more difficulty getting into a trial if things are very advanced. I'm not stage IV, only a caregiver for my father. But for me, the BRAF stuff would be last on my list. I'd try IL-2, Anti-PD1, Yervoy or any other promising clinical trial first if my disease wasn't widespread.
Just my thoughts,
Janner
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- March 22, 2013 at 1:58 pm
I'm not sure there really is an order, much depends on the disease location(s) and amount of disease. Anti-PD1 is in trials and so still an unknown (although promising). Yervoy takes more time to work so it typically used when there is less disease. Zelboraf (if BRAF positive) is used when there is a lot of disease to try and control things and maybe give you a chance at trying something else when/if it fails. IL-2 is tough but seems to have the best overall percentages of long term survivors, although that % is small. If you are a complete responder, you tend to have longer duration that most other treatments. If I had minimal disease, that would also be in my choice list.
My stage IV father with minimal disease has been offered Yervoy (he's not doing any treatments at age 88). He only would have been given Zelboraf if he had much more involvement. A treatment involving a BRAF and MEK inhibitor would probably be my choice over just a BRAF inhibitor alone. It's hard to know where Anti-PD1 fits in the mix. In addition, Anti-PD1 requires that you can find and get into a trial. Not all sites do trials or even have open slots. Most clinical trials do require better "health" scores. You need to be healthier to join them. You might have much more difficulty getting into a trial if things are very advanced. I'm not stage IV, only a caregiver for my father. But for me, the BRAF stuff would be last on my list. I'd try IL-2, Anti-PD1, Yervoy or any other promising clinical trial first if my disease wasn't widespread.
Just my thoughts,
Janner
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- March 22, 2013 at 6:18 pm
Jewel:
This is a question raised by a lot of patients and, frankly, by a lot of doctors as well. In truth, there is no "right" answer. The treatment plan very much depends on the individual patient and even then different doctors may offer different plans. Most important for Stage IV patients is to have that treatment plan developed by someone who sees a lot of melanoma.
You may want to watch video of a webinar we did a few weeks ago, focusing on just this topic:
http://www.melanoma.org/get-involved/2112013-webinar-latest-melanoma-treatment-options
In my view, clinical trials still offer a lot that is not available through other current treatments. Janner did a great job of describing current options. Two of the drugs, IL-2 and Yervoy, are immunotherapy drugs. They work to get the immune system re-engaged. The results of the PD1 drugs that are currently in trials promise higher response rates and fewer toxicities than either of the approved drugs. The data is still young, however, and those numbers could change. Still, the research community is very excited about PD1.The other approved drug, Zelboraf, is a targeted therapy drug. It goes into the malignant cell and blocks the mutation that is causing the cell to grow out of control. Again, in trials the BRAF inhibitor and a MEK inhibitor are being used in combination. The early data show better response, longer response, and fewer side effects. As with PD1, those numbers could change. A new BRAF inhibitor and a MEK inhibitor are likely to be approved by the FDA by mid-year this year, meaning they would be available outside of trials.Of most interest to me, however, is looking into other combinations. For patients who have the BRAF mutation, a combination of a BRAF inhibitor and an immunotherapy drug makes sense. The BRAF inhibitor would reduce the tumor burden, giving the immune system less work to do, and some data shows that targeted therapy makes the tumor cell more antigenic, or easier for the immune system to spot.I think you are very smart to be thinking about options for the future. It is best to have a plan in place, and hope that you never have to implement it. And the plan cannot look to just one therapy. It is, truly, a plan, and as such should include several steps or treatments.Tim–MRF -
- March 22, 2013 at 6:18 pm
Jewel:
This is a question raised by a lot of patients and, frankly, by a lot of doctors as well. In truth, there is no "right" answer. The treatment plan very much depends on the individual patient and even then different doctors may offer different plans. Most important for Stage IV patients is to have that treatment plan developed by someone who sees a lot of melanoma.
You may want to watch video of a webinar we did a few weeks ago, focusing on just this topic:
http://www.melanoma.org/get-involved/2112013-webinar-latest-melanoma-treatment-options
In my view, clinical trials still offer a lot that is not available through other current treatments. Janner did a great job of describing current options. Two of the drugs, IL-2 and Yervoy, are immunotherapy drugs. They work to get the immune system re-engaged. The results of the PD1 drugs that are currently in trials promise higher response rates and fewer toxicities than either of the approved drugs. The data is still young, however, and those numbers could change. Still, the research community is very excited about PD1.The other approved drug, Zelboraf, is a targeted therapy drug. It goes into the malignant cell and blocks the mutation that is causing the cell to grow out of control. Again, in trials the BRAF inhibitor and a MEK inhibitor are being used in combination. The early data show better response, longer response, and fewer side effects. As with PD1, those numbers could change. A new BRAF inhibitor and a MEK inhibitor are likely to be approved by the FDA by mid-year this year, meaning they would be available outside of trials.Of most interest to me, however, is looking into other combinations. For patients who have the BRAF mutation, a combination of a BRAF inhibitor and an immunotherapy drug makes sense. The BRAF inhibitor would reduce the tumor burden, giving the immune system less work to do, and some data shows that targeted therapy makes the tumor cell more antigenic, or easier for the immune system to spot.I think you are very smart to be thinking about options for the future. It is best to have a plan in place, and hope that you never have to implement it. And the plan cannot look to just one therapy. It is, truly, a plan, and as such should include several steps or treatments.Tim–MRF -
- March 22, 2013 at 6:18 pm
Jewel:
This is a question raised by a lot of patients and, frankly, by a lot of doctors as well. In truth, there is no "right" answer. The treatment plan very much depends on the individual patient and even then different doctors may offer different plans. Most important for Stage IV patients is to have that treatment plan developed by someone who sees a lot of melanoma.
You may want to watch video of a webinar we did a few weeks ago, focusing on just this topic:
http://www.melanoma.org/get-involved/2112013-webinar-latest-melanoma-treatment-options
In my view, clinical trials still offer a lot that is not available through other current treatments. Janner did a great job of describing current options. Two of the drugs, IL-2 and Yervoy, are immunotherapy drugs. They work to get the immune system re-engaged. The results of the PD1 drugs that are currently in trials promise higher response rates and fewer toxicities than either of the approved drugs. The data is still young, however, and those numbers could change. Still, the research community is very excited about PD1.The other approved drug, Zelboraf, is a targeted therapy drug. It goes into the malignant cell and blocks the mutation that is causing the cell to grow out of control. Again, in trials the BRAF inhibitor and a MEK inhibitor are being used in combination. The early data show better response, longer response, and fewer side effects. As with PD1, those numbers could change. A new BRAF inhibitor and a MEK inhibitor are likely to be approved by the FDA by mid-year this year, meaning they would be available outside of trials.Of most interest to me, however, is looking into other combinations. For patients who have the BRAF mutation, a combination of a BRAF inhibitor and an immunotherapy drug makes sense. The BRAF inhibitor would reduce the tumor burden, giving the immune system less work to do, and some data shows that targeted therapy makes the tumor cell more antigenic, or easier for the immune system to spot.I think you are very smart to be thinking about options for the future. It is best to have a plan in place, and hope that you never have to implement it. And the plan cannot look to just one therapy. It is, truly, a plan, and as such should include several steps or treatments.Tim–MRF -
- March 23, 2013 at 1:19 am
These two responses from janner and Tim are awesome summaries of current realistic therapies for melanoma. Thank you both for being so articulate and understandable in listing out these options. My husband, Don, is Stage IV with a lot of disease. He had a major setback from a brain met which did not respond to cyberknife and had to be surgically removed. He is now is rehab trying to regain strength and use of legs, lost because the brain tumor decided to grow, and grow fast. He just started Zelboraf and we are praying for quick results to help slow down the disease so we can also make our Plans B an C.
Janet Lee
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- March 23, 2013 at 1:19 am
These two responses from janner and Tim are awesome summaries of current realistic therapies for melanoma. Thank you both for being so articulate and understandable in listing out these options. My husband, Don, is Stage IV with a lot of disease. He had a major setback from a brain met which did not respond to cyberknife and had to be surgically removed. He is now is rehab trying to regain strength and use of legs, lost because the brain tumor decided to grow, and grow fast. He just started Zelboraf and we are praying for quick results to help slow down the disease so we can also make our Plans B an C.
Janet Lee
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- March 23, 2013 at 1:19 am
These two responses from janner and Tim are awesome summaries of current realistic therapies for melanoma. Thank you both for being so articulate and understandable in listing out these options. My husband, Don, is Stage IV with a lot of disease. He had a major setback from a brain met which did not respond to cyberknife and had to be surgically removed. He is now is rehab trying to regain strength and use of legs, lost because the brain tumor decided to grow, and grow fast. He just started Zelboraf and we are praying for quick results to help slow down the disease so we can also make our Plans B an C.
Janet Lee
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- March 23, 2013 at 1:23 pm
Wow! Janner and Tim provided GREAT responses. Thanks, guys!
The only thing I would add is that if I was NED and developed a recurrance, the FIRST thing I would look at would be clinical trials. I do not mean to imply that clinical trials are any better than what is already approved– most of them are not. The point is that new therapies are being brought forward all the time and one or another of them MIGHT be particularly promising for a given situation. However, most clinical trials have strict protocols that eliminate people for various reasons. I would kick myself if I decided to take Yervoy (for example) only to find out later on that having taken Yervoy now eliminates me from a really promising trial.
So I think you are smart to sketch out what might be your Plan A and Plan B and Plan C as Janner and Tim suggested. However, if and when the time comes, before you make your final decision, check into the then available clinical trials and see what's out there.
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- March 23, 2013 at 1:23 pm
Wow! Janner and Tim provided GREAT responses. Thanks, guys!
The only thing I would add is that if I was NED and developed a recurrance, the FIRST thing I would look at would be clinical trials. I do not mean to imply that clinical trials are any better than what is already approved– most of them are not. The point is that new therapies are being brought forward all the time and one or another of them MIGHT be particularly promising for a given situation. However, most clinical trials have strict protocols that eliminate people for various reasons. I would kick myself if I decided to take Yervoy (for example) only to find out later on that having taken Yervoy now eliminates me from a really promising trial.
So I think you are smart to sketch out what might be your Plan A and Plan B and Plan C as Janner and Tim suggested. However, if and when the time comes, before you make your final decision, check into the then available clinical trials and see what's out there.
-
- March 23, 2013 at 1:23 pm
Wow! Janner and Tim provided GREAT responses. Thanks, guys!
The only thing I would add is that if I was NED and developed a recurrance, the FIRST thing I would look at would be clinical trials. I do not mean to imply that clinical trials are any better than what is already approved– most of them are not. The point is that new therapies are being brought forward all the time and one or another of them MIGHT be particularly promising for a given situation. However, most clinical trials have strict protocols that eliminate people for various reasons. I would kick myself if I decided to take Yervoy (for example) only to find out later on that having taken Yervoy now eliminates me from a really promising trial.
So I think you are smart to sketch out what might be your Plan A and Plan B and Plan C as Janner and Tim suggested. However, if and when the time comes, before you make your final decision, check into the then available clinical trials and see what's out there.
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- March 25, 2013 at 1:54 am
My wife and I have questioned the same thing since her diagnosis in Dec. We choose Yervoy which she just finished her last treatment March 19. As of now our next plan if need is Anti PD1. As others have said we are talking with our team of doctors at Moffit about other options coming out. We have learned to ask all questions and gather as much info espically from reading all the posts from this site.
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- March 25, 2013 at 1:54 am
My wife and I have questioned the same thing since her diagnosis in Dec. We choose Yervoy which she just finished her last treatment March 19. As of now our next plan if need is Anti PD1. As others have said we are talking with our team of doctors at Moffit about other options coming out. We have learned to ask all questions and gather as much info espically from reading all the posts from this site.
-
- March 25, 2013 at 1:54 am
My wife and I have questioned the same thing since her diagnosis in Dec. We choose Yervoy which she just finished her last treatment March 19. As of now our next plan if need is Anti PD1. As others have said we are talking with our team of doctors at Moffit about other options coming out. We have learned to ask all questions and gather as much info espically from reading all the posts from this site.
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