Just progressed to stage IV, would love input on what order we should try treatments

I am heart broken reading your post.  I am in a very similar situation.  I'm a little older (45), but I am the father of 3 young children and a 35 year old wife.  My original dx was in 2008 with a 3mm deep mole on my scalp.  Did Leukine injections for 3 years – everything was peachy.  Then in late october I started vomiting and having horrible headaches.  Had a scan and sure enough – 3 brain mets.  I am doing Zelboraf at the moment.  Seems to be working but it's hard to know for sure.  My first scan came out clean.  If you are BRAF positive – I would recommend it as a means of getting the disease contained.  It is not a cure, but it works fast and it will give you time to consider the next step – which may be Ipi or one of the other BRAF drugs, or the cell transfer, or the ANti PD drug.  The good thing is that you have choices. Please seek advice from more than one oncologist and one center.   I hope and pray for the best for you.  Just know that there is not one correct answer, and if the first things doesn't work – try the next, and keep focused on beating this thing. Stay strong! 

David

I am heart broken reading your post.  I am in a very similar situation.  I'm a little older (45), but I am the father of 3 young children and a 35 year old wife.  My original dx was in 2008 with a 3mm deep mole on my scalp.  Did Leukine injections for 3 years – everything was peachy.  Then in late october I started vomiting and having horrible headaches.  Had a scan and sure enough – 3 brain mets.  I am doing Zelboraf at the moment.  Seems to be working but it's hard to know for sure.  My first scan came out clean.  If you are BRAF positive – I would recommend it as a means of getting the disease contained.  It is not a cure, but it works fast and it will give you time to consider the next step – which may be Ipi or one of the other BRAF drugs, or the cell transfer, or the ANti PD drug.  The good thing is that you have choices. Please seek advice from more than one oncologist and one center.   I hope and pray for the best for you.  Just know that there is not one correct answer, and if the first things doesn't work – try the next, and keep focused on beating this thing. Stay strong! 

David

I am heart broken reading your post.  I am in a very similar situation.  I'm a little older (45), but I am the father of 3 young children and a 35 year old wife.  My original dx was in 2008 with a 3mm deep mole on my scalp.  Did Leukine injections for 3 years – everything was peachy.  Then in late october I started vomiting and having horrible headaches.  Had a scan and sure enough – 3 brain mets.  I am doing Zelboraf at the moment.  Seems to be working but it's hard to know for sure.  My first scan came out clean.  If you are BRAF positive – I would recommend it as a means of getting the disease contained.  It is not a cure, but it works fast and it will give you time to consider the next step – which may be Ipi or one of the other BRAF drugs, or the cell transfer, or the ANti PD drug.  The good thing is that you have choices. Please seek advice from more than one oncologist and one center.   I hope and pray for the best for you.  Just know that there is not one correct answer, and if the first things doesn't work – try the next, and keep focused on beating this thing. Stay strong! 

David

Ali, I am sorry to read of your situation. I think that surgery, if possible, is the best initial way to reduce tumour load. Ideally, a surgical oncologist should be consulted about this.

At the moment it appears that the best options for effective systemic treatments include TIL treatment (adoptive cell therapy), Yervoy (ipi), IL-2 (interleukin-2), or an anti PD-1 (MDX-1106) clinical trial.

Note that IL-2 before or after Yervoy can make a good combination. Early results of anti PD-1 trials seem to be very promising from what I have read.

Hope this helps

Frank from Australia

Ali, I am sorry to read of your situation. I think that surgery, if possible, is the best initial way to reduce tumour load. Ideally, a surgical oncologist should be consulted about this.

At the moment it appears that the best options for effective systemic treatments include TIL treatment (adoptive cell therapy), Yervoy (ipi), IL-2 (interleukin-2), or an anti PD-1 (MDX-1106) clinical trial.

Note that IL-2 before or after Yervoy can make a good combination. Early results of anti PD-1 trials seem to be very promising from what I have read.

Hope this helps

Frank from Australia

Ali, I am sorry to read of your situation. I think that surgery, if possible, is the best initial way to reduce tumour load. Ideally, a surgical oncologist should be consulted about this.

At the moment it appears that the best options for effective systemic treatments include TIL treatment (adoptive cell therapy), Yervoy (ipi), IL-2 (interleukin-2), or an anti PD-1 (MDX-1106) clinical trial.

Note that IL-2 before or after Yervoy can make a good combination. Early results of anti PD-1 trials seem to be very promising from what I have read.

Hope this helps

Frank from Australia

Ali, I would find out your HLAA2 blood type, and pursue trials with adoptive cell transfer, MDAnderson is running a trial with two cohorts and is now I believe wanting people who are HLAA2 positive.They need to remove the tumor and see if they can grow the T cells. Also, check out adoptive cell at NIH, I believe your youth will help you get thru these difficult treatments. My husband goes to md anderson and it took us a few weeks to get an appointment, but that’s was okay because he was finishing up his radiation. He is going for his 4th round of biochemo next week, MDAnderson has a floor for this treatment and high dose IL2. Tough treatments, but my husband has done well so far! Don’t hesitate to email me if you have any questions, you have many options, with Ipi, Zelboraf, and antiPd1 trials. Good luck to you, Valerie (Phil’s wife)

Ali, I would find out your HLAA2 blood type, and pursue trials with adoptive cell transfer, MDAnderson is running a trial with two cohorts and is now I believe wanting people who are HLAA2 positive.They need to remove the tumor and see if they can grow the T cells. Also, check out adoptive cell at NIH, I believe your youth will help you get thru these difficult treatments. My husband goes to md anderson and it took us a few weeks to get an appointment, but that’s was okay because he was finishing up his radiation. He is going for his 4th round of biochemo next week, MDAnderson has a floor for this treatment and high dose IL2. Tough treatments, but my husband has done well so far! Don’t hesitate to email me if you have any questions, you have many options, with Ipi, Zelboraf, and antiPd1 trials. Good luck to you, Valerie (Phil’s wife)

Ali, I would find out your HLAA2 blood type, and pursue trials with adoptive cell transfer, MDAnderson is running a trial with two cohorts and is now I believe wanting people who are HLAA2 positive.They need to remove the tumor and see if they can grow the T cells. Also, check out adoptive cell at NIH, I believe your youth will help you get thru these difficult treatments. My husband goes to md anderson and it took us a few weeks to get an appointment, but that’s was okay because he was finishing up his radiation. He is going for his 4th round of biochemo next week, MDAnderson has a floor for this treatment and high dose IL2. Tough treatments, but my husband has done well so far! Don’t hesitate to email me if you have any questions, you have many options, with Ipi, Zelboraf, and antiPd1 trials. Good luck to you, Valerie (Phil’s wife)

Ali:

I am sorry for this news–what a 33rd birthday present!

You are right that you have some options, and the question comes down to which option to choose and when.  These are very personal choices, as you know.  I always advise people who are Stage IV to be sure they are being treated by a team that sees a lot of melanoma and is offering the latest options.  Also, try to see an oncologist who is willing to refer you out to someone else if they have a better trial or treatment option.  For example, IL-2 is only offered at certain locations, and some doctors won't refer their patients to those locations.  

I would like to think a Stage IV patient could get into a center in less than 2 two weeks, but if it takes that long to get to the best person then it is probably worth the wait.   Depending on where you live or your ability to travel, you may have other options as good as MD Anderson that could see you sooner.

Last spring i spoke to two different doctors who I regard highly about a Stage IV patient about your age.  They thought IL-2 was a good first choice, even though neither of them offer it in their practice.  This surprised me, but their thinking was this:  She is young and healthy, and so is likely able to tolerate the procedure.  She may get lucky and be in the 4% of people who have a complete response, or in the 14% who have some kind of response.  If so, great.  If not–or if she has a recurrence–she can do ipi or one of the BRAF inhibitors later.  I am not recommending a treatment approach, or even saying that this is what I would do in that situation.  I was intrigued by their thinking, though, and thought I would share it with you.

As you consider your treatment options, don't forget clinical trials.  Doctors who are big on immunotherapy are very interested in the anti-PD1 studies.  This is an agent that works like ipi, but on a different target.  And, a number of studies are being done combining a BRAF inhibitor with other drugs–either another inhibitor (MEK, PI3 Kinase, AKT, etc.) or some form of immunotherapy.  A trial recently opened that combines Yervoy with Zelboraf (ipi plus BRAF), and they are currently enrolling patients at UCLA and Sloan-Kettering.  

Please keep us posted on your decisions and progress.

Tim–MRF

 

 

 

 

 

Ali:

I am sorry for this news–what a 33rd birthday present!

You are right that you have some options, and the question comes down to which option to choose and when.  These are very personal choices, as you know.  I always advise people who are Stage IV to be sure they are being treated by a team that sees a lot of melanoma and is offering the latest options.  Also, try to see an oncologist who is willing to refer you out to someone else if they have a better trial or treatment option.  For example, IL-2 is only offered at certain locations, and some doctors won't refer their patients to those locations.  

I would like to think a Stage IV patient could get into a center in less than 2 two weeks, but if it takes that long to get to the best person then it is probably worth the wait.   Depending on where you live or your ability to travel, you may have other options as good as MD Anderson that could see you sooner.

Last spring i spoke to two different doctors who I regard highly about a Stage IV patient about your age.  They thought IL-2 was a good first choice, even though neither of them offer it in their practice.  This surprised me, but their thinking was this:  She is young and healthy, and so is likely able to tolerate the procedure.  She may get lucky and be in the 4% of people who have a complete response, or in the 14% who have some kind of response.  If so, great.  If not–or if she has a recurrence–she can do ipi or one of the BRAF inhibitors later.  I am not recommending a treatment approach, or even saying that this is what I would do in that situation.  I was intrigued by their thinking, though, and thought I would share it with you.

As you consider your treatment options, don't forget clinical trials.  Doctors who are big on immunotherapy are very interested in the anti-PD1 studies.  This is an agent that works like ipi, but on a different target.  And, a number of studies are being done combining a BRAF inhibitor with other drugs–either another inhibitor (MEK, PI3 Kinase, AKT, etc.) or some form of immunotherapy.  A trial recently opened that combines Yervoy with Zelboraf (ipi plus BRAF), and they are currently enrolling patients at UCLA and Sloan-Kettering.  

Please keep us posted on your decisions and progress.

Tim–MRF

 

 

 

 

 

Ali:

I am sorry for this news–what a 33rd birthday present!

You are right that you have some options, and the question comes down to which option to choose and when.  These are very personal choices, as you know.  I always advise people who are Stage IV to be sure they are being treated by a team that sees a lot of melanoma and is offering the latest options.  Also, try to see an oncologist who is willing to refer you out to someone else if they have a better trial or treatment option.  For example, IL-2 is only offered at certain locations, and some doctors won't refer their patients to those locations.  

I would like to think a Stage IV patient could get into a center in less than 2 two weeks, but if it takes that long to get to the best person then it is probably worth the wait.   Depending on where you live or your ability to travel, you may have other options as good as MD Anderson that could see you sooner.

Last spring i spoke to two different doctors who I regard highly about a Stage IV patient about your age.  They thought IL-2 was a good first choice, even though neither of them offer it in their practice.  This surprised me, but their thinking was this:  She is young and healthy, and so is likely able to tolerate the procedure.  She may get lucky and be in the 4% of people who have a complete response, or in the 14% who have some kind of response.  If so, great.  If not–or if she has a recurrence–she can do ipi or one of the BRAF inhibitors later.  I am not recommending a treatment approach, or even saying that this is what I would do in that situation.  I was intrigued by their thinking, though, and thought I would share it with you.

As you consider your treatment options, don't forget clinical trials.  Doctors who are big on immunotherapy are very interested in the anti-PD1 studies.  This is an agent that works like ipi, but on a different target.  And, a number of studies are being done combining a BRAF inhibitor with other drugs–either another inhibitor (MEK, PI3 Kinase, AKT, etc.) or some form of immunotherapy.  A trial recently opened that combines Yervoy with Zelboraf (ipi plus BRAF), and they are currently enrolling patients at UCLA and Sloan-Kettering.  

Please keep us posted on your decisions and progress.

Tim–MRF

 

 

 

 

 

Ali,

I am so sorry to hear of your recent news and as many on this board can identify in many ways.  My short story is: 39 now and have a 2 year old (she was still in the belly when I first met my oncologist).  I had thigh melanoma in 2001 – removed with wide excision, nodes negative – no problem until 2009 then had small nodule (met) in neck show up no other disease – removed no problem – PET scans through June 2011 negative until mets showed up (lung, SQ x3, and femur).  Faced with many of the same choices/questions you have now.  My treatment road, which has made sense so far has been:

I live in Seattle where they are doing some adoptive T-cell therapy, similar but different from the NIH program.  Because TCells take 6-10 weeks to grow and it looked like I had the time (none of my disease appeared life threatening).  I chose to get my TCells going before doing High Dose IL-2.  That way, if I was one of the lucky 6-12% who responded to HD IL-2 then my cells would chill until I needed them.  If not, then by the time I finished IL2 – about a 3 month process including follow-up scans.  My TCells would be ready.  I had a very limited response, but no progression after IL2.  So I enrolled in a trial that includes the TCells and ipi.  I just finished the ipi and it hasn't been bad for me.   I really liked not having to wait between treatments.  Of course, this has been helped by where I live and access to the trial.   I am BRAF mut + too and plan to exhaust all other options before starting it given the short window of efficacy.  If I have progressive disease soon (aka no response to the ipi) I believe my next step will be to try a TIL cell trial if I qualify. 

I wish you the very best during this most difficult time.  I just started spending time on this board but plan to be a little more active.  Mainly because, while it is important, I don't like feeling like a guinea pig and want to help solve this problem for us and those behind us.  Please don't hesitate to email if I can help.

Troy

Ali,

I am so sorry to hear of your recent news and as many on this board can identify in many ways.  My short story is: 39 now and have a 2 year old (she was still in the belly when I first met my oncologist).  I had thigh melanoma in 2001 – removed with wide excision, nodes negative – no problem until 2009 then had small nodule (met) in neck show up no other disease – removed no problem – PET scans through June 2011 negative until mets showed up (lung, SQ x3, and femur).  Faced with many of the same choices/questions you have now.  My treatment road, which has made sense so far has been:

I live in Seattle where they are doing some adoptive T-cell therapy, similar but different from the NIH program.  Because TCells take 6-10 weeks to grow and it looked like I had the time (none of my disease appeared life threatening).  I chose to get my TCells going before doing High Dose IL-2.  That way, if I was one of the lucky 6-12% who responded to HD IL-2 then my cells would chill until I needed them.  If not, then by the time I finished IL2 – about a 3 month process including follow-up scans.  My TCells would be ready.  I had a very limited response, but no progression after IL2.  So I enrolled in a trial that includes the TCells and ipi.  I just finished the ipi and it hasn't been bad for me.   I really liked not having to wait between treatments.  Of course, this has been helped by where I live and access to the trial.   I am BRAF mut + too and plan to exhaust all other options before starting it given the short window of efficacy.  If I have progressive disease soon (aka no response to the ipi) I believe my next step will be to try a TIL cell trial if I qualify. 

I wish you the very best during this most difficult time.  I just started spending time on this board but plan to be a little more active.  Mainly because, while it is important, I don't like feeling like a guinea pig and want to help solve this problem for us and those behind us.  Please don't hesitate to email if I can help.

Troy

Ali,

I am so sorry to hear of your recent news and as many on this board can identify in many ways.  My short story is: 39 now and have a 2 year old (she was still in the belly when I first met my oncologist).  I had thigh melanoma in 2001 – removed with wide excision, nodes negative – no problem until 2009 then had small nodule (met) in neck show up no other disease – removed no problem – PET scans through June 2011 negative until mets showed up (lung, SQ x3, and femur).  Faced with many of the same choices/questions you have now.  My treatment road, which has made sense so far has been:

I live in Seattle where they are doing some adoptive T-cell therapy, similar but different from the NIH program.  Because TCells take 6-10 weeks to grow and it looked like I had the time (none of my disease appeared life threatening).  I chose to get my TCells going before doing High Dose IL-2.  That way, if I was one of the lucky 6-12% who responded to HD IL-2 then my cells would chill until I needed them.  If not, then by the time I finished IL2 – about a 3 month process including follow-up scans.  My TCells would be ready.  I had a very limited response, but no progression after IL2.  So I enrolled in a trial that includes the TCells and ipi.  I just finished the ipi and it hasn't been bad for me.   I really liked not having to wait between treatments.  Of course, this has been helped by where I live and access to the trial.   I am BRAF mut + too and plan to exhaust all other options before starting it given the short window of efficacy.  If I have progressive disease soon (aka no response to the ipi) I believe my next step will be to try a TIL cell trial if I qualify. 

I wish you the very best during this most difficult time.  I just started spending time on this board but plan to be a little more active.  Mainly because, while it is important, I don't like feeling like a guinea pig and want to help solve this problem for us and those behind us.  Please don't hesitate to email if I can help.

Troy

hi ali –

you have probably already made your decision by now but thought i would give my thoughts.  my partner is 44, athletic, strong and was diagnosed stage 4 with inoperable spinal tumors.  we went the zelboraf route.  although for some the side effects can be rough, she (like many others) have found that below the suggested dose is doing a great job.  4 pills/2 x day is suggested but she is on 2 pills/2x day and the spinal tumors have shrunk and tumors in lung have shrunk giving her the ability to almost get off morphine and get back to a lot of her life.  i have heard that IL2 is a VERY toxic and older treatment and if you test positive for BRAF then that is a good way to go.  zelboraf has a high success rate and although it doesn't keep working, it can give you the time you need to think of your next line of attack.  just my two cents.  hope you're doing well.

sylvia

hi ali –

you have probably already made your decision by now but thought i would give my thoughts.  my partner is 44, athletic, strong and was diagnosed stage 4 with inoperable spinal tumors.  we went the zelboraf route.  although for some the side effects can be rough, she (like many others) have found that below the suggested dose is doing a great job.  4 pills/2 x day is suggested but she is on 2 pills/2x day and the spinal tumors have shrunk and tumors in lung have shrunk giving her the ability to almost get off morphine and get back to a lot of her life.  i have heard that IL2 is a VERY toxic and older treatment and if you test positive for BRAF then that is a good way to go.  zelboraf has a high success rate and although it doesn't keep working, it can give you the time you need to think of your next line of attack.  just my two cents.  hope you're doing well.

sylvia

hi ali –

you have probably already made your decision by now but thought i would give my thoughts.  my partner is 44, athletic, strong and was diagnosed stage 4 with inoperable spinal tumors.  we went the zelboraf route.  although for some the side effects can be rough, she (like many others) have found that below the suggested dose is doing a great job.  4 pills/2 x day is suggested but she is on 2 pills/2x day and the spinal tumors have shrunk and tumors in lung have shrunk giving her the ability to almost get off morphine and get back to a lot of her life.  i have heard that IL2 is a VERY toxic and older treatment and if you test positive for BRAF then that is a good way to go.  zelboraf has a high success rate and although it doesn't keep working, it can give you the time you need to think of your next line of attack.  just my two cents.  hope you're doing well.

sylvia