Options after ipi

Sorry you have to deal with such a difficult situation. Sloan is great – one question you might ask is if your mom is with a melanoma specialist such as Dr. Judd Wolchock, not just a general oncologist. Typically Ipi (Yervoy) ends at week 12 and you get scanned at week 16 and then an assessment is made.

Choices after Ipi especially with brain indications are more limited. Yes, IL-2 is possible, but need to be off steriods which presumably she is on after the brain met treatment. Even though it's tough it's best option among existing approved therapies. Chemo is possible – Temdar, Taxol and running some different combinations plus controlling tumors with radiation – it works for a small percentage of people. If you search on this site using words like brain mets, brain metastasis, you will find some helpful suggestions.

Since it's in the brain the clinical trial options are more limited although the best route- generally most clinical trials require that you be off steriods and free of brain disease for at least 90 days. There are a few places (MD Anderson) which have some clinical trials focused on brain metastases. But they all usually involve IL-2. But might be worth looking them up too.

If you can get to the National Cancer Institute and get on their trials involving TIL's (tumor infiltrating lymphocytes – search under clinicaltrials.gov ) that seems the best systemic therapy option out there – but again they are pretty strict about the brain met situation. Here is one that it is ok to have brain mets:

http://clinicaltrials.gov/ct2/show/NCT01319565?term=TIL+and+NIH&rank=3

The downside of these is they need a tumor to harvest the cells.But it is non-randomized so you get some treatment.

Most of the stuff you will find when searching for information on melanoma when it matastasizes to the brain will tell you it's a rough go – it's pretty unlikely that there is only one – because it no doubt spread through the blood and crossed the blood brain barrier  – so likely there are other cells. So generally it is about control – scanning and then radiating tumors with Gamma, Cyber knife or on to whole brain radiation. 

So as horrible as Il-2 is, it is the best shot if she cannot get on a clinical trial.

Best of luck to you and your mom. 

Sorry you have to deal with such a difficult situation. Sloan is great – one question you might ask is if your mom is with a melanoma specialist such as Dr. Judd Wolchock, not just a general oncologist. Typically Ipi (Yervoy) ends at week 12 and you get scanned at week 16 and then an assessment is made.

Choices after Ipi especially with brain indications are more limited. Yes, IL-2 is possible, but need to be off steriods which presumably she is on after the brain met treatment. Even though it's tough it's best option among existing approved therapies. Chemo is possible – Temdar, Taxol and running some different combinations plus controlling tumors with radiation – it works for a small percentage of people. If you search on this site using words like brain mets, brain metastasis, you will find some helpful suggestions.

Since it's in the brain the clinical trial options are more limited although the best route- generally most clinical trials require that you be off steriods and free of brain disease for at least 90 days. There are a few places (MD Anderson) which have some clinical trials focused on brain metastases. But they all usually involve IL-2. But might be worth looking them up too.

If you can get to the National Cancer Institute and get on their trials involving TIL's (tumor infiltrating lymphocytes – search under clinicaltrials.gov ) that seems the best systemic therapy option out there – but again they are pretty strict about the brain met situation. Here is one that it is ok to have brain mets:

http://clinicaltrials.gov/ct2/show/NCT01319565?term=TIL+and+NIH&rank=3

The downside of these is they need a tumor to harvest the cells.But it is non-randomized so you get some treatment.

Most of the stuff you will find when searching for information on melanoma when it matastasizes to the brain will tell you it's a rough go – it's pretty unlikely that there is only one – because it no doubt spread through the blood and crossed the blood brain barrier  – so likely there are other cells. So generally it is about control – scanning and then radiating tumors with Gamma, Cyber knife or on to whole brain radiation. 

So as horrible as Il-2 is, it is the best shot if she cannot get on a clinical trial.

Best of luck to you and your mom. 

4 1/2 years ago when I went to Stage IV, I went to IL-2 as quick as possible because that was the only thing available that really stood a feasible chance of helping and one needed to be in the best possible condition to withstand the rigor of the treatment.  Ipi is the newest and really the only approved treatment that is even in the same range (15-20% response rate) for at least temporary help for across the board melanoma patients.as IL-2.  Ipi takes longer to develop a response than IL-2 an if given early may take several months or longer to show benefits.  If one waits too late to take the Ipi, then they may be gone before the treatment actually takes effect.  So, Yes, I consider Ipi to be a valid first line of attack for a new patient. 

   Research conducted by James Breitfeller (a medical researcher that is now also a NED Stage IV melanoma warrior) points to a likely timetable upon which Ipi followed by IL-2 (after Ipi failure) on a certain schedule should be even more effective than either treatment alone.  One problem is getting the trials run for this line of attack to be approved. (http://melanomamissionary.blogspot.com/)

   It is not unusual for tumors to actually expand after starting ipi, before a reduction takes place, even if Ipi is working.  Ipi does had side effects,which can be rough.  IL-2 is rough for a short term after each weeks treatment.  I was 62 and in great shape (outside of being told that I would likely be dead within 6 months from melanoma.) when I found a great Melanoma specialist that was at the forefront of working with IL-2.  I found IL-2 tough but doable, especially since it stood (and stands) the best chance for what is long term remission that may even be considered a cure. 

    I am  not sure just how a none responder is figured with Ipi, hopefully someone else can add that information.  IL-2 responders are those that the growth rate does not exceed 25% and may be stable and may even follow on to complete remission.  I was stable on it for almost two years.  I know others that are NED after having been treated with IL-2 as their sole treatment 20 years ago.

   From her primary location it is not likely that she will have the C-kit oncoprotein and c-kit DNA mutation, but it might be worth it to have the first local c-kit oncoprotein test run to be sure.  Can be done locally and the cost should be about $125.

   The TIL procedure mentioned above appears to hold promise.  It wipes out ones immune system then uses the infusion of enhanced Cells to fight tumors with the aid of IL-2.

   My profile lists my IL-2 experiences.  Please contact me if I can be of father assistance.

   Praying for you and your Mother.

4 1/2 years ago when I went to Stage IV, I went to IL-2 as quick as possible because that was the only thing available that really stood a feasible chance of helping and one needed to be in the best possible condition to withstand the rigor of the treatment.  Ipi is the newest and really the only approved treatment that is even in the same range (15-20% response rate) for at least temporary help for across the board melanoma patients.as IL-2.  Ipi takes longer to develop a response than IL-2 an if given early may take several months or longer to show benefits.  If one waits too late to take the Ipi, then they may be gone before the treatment actually takes effect.  So, Yes, I consider Ipi to be a valid first line of attack for a new patient. 

   Research conducted by James Breitfeller (a medical researcher that is now also a NED Stage IV melanoma warrior) points to a likely timetable upon which Ipi followed by IL-2 (after Ipi failure) on a certain schedule should be even more effective than either treatment alone.  One problem is getting the trials run for this line of attack to be approved. (http://melanomamissionary.blogspot.com/)

   It is not unusual for tumors to actually expand after starting ipi, before a reduction takes place, even if Ipi is working.  Ipi does had side effects,which can be rough.  IL-2 is rough for a short term after each weeks treatment.  I was 62 and in great shape (outside of being told that I would likely be dead within 6 months from melanoma.) when I found a great Melanoma specialist that was at the forefront of working with IL-2.  I found IL-2 tough but doable, especially since it stood (and stands) the best chance for what is long term remission that may even be considered a cure. 

    I am  not sure just how a none responder is figured with Ipi, hopefully someone else can add that information.  IL-2 responders are those that the growth rate does not exceed 25% and may be stable and may even follow on to complete remission.  I was stable on it for almost two years.  I know others that are NED after having been treated with IL-2 as their sole treatment 20 years ago.

   From her primary location it is not likely that she will have the C-kit oncoprotein and c-kit DNA mutation, but it might be worth it to have the first local c-kit oncoprotein test run to be sure.  Can be done locally and the cost should be about $125.

   The TIL procedure mentioned above appears to hold promise.  It wipes out ones immune system then uses the infusion of enhanced Cells to fight tumors with the aid of IL-2.

   My profile lists my IL-2 experiences.  Please contact me if I can be of father assistance.

   Praying for you and your Mother.

A few things for your consideration,…and please be forwarned that by the end of this post you will probably won't particularly like me, which is fine.

Before I get to your three questions, there is a certain sense to your tone that is not clear to me, and frankly a bit troubling.

First, this is all about your mother and not you.

 What is it specifically that leads you to believe, given their good long term health, other than melanoma for your mother,  that your parents are unskilled to advocate for themselves and marginalize your father as "only being to help out"?  Having nurtured you, guided you and supported you to the end point of your seven years of college does not convince me they are without skills.

Please address the disease for what it is……………melanoma.  It is not a "spot " or "thing"……….it is melanoma, and it is cancer.

One more slight spanking,………………..don't think you are smarter than melanoma, because you are not.  Even though it is a stupid disease, it can and does outsmart the brigthtest minds in the world.

Now, on to melanoma.  No matter where you go, no matter who you see, no matter what you do, any and all current treatments for melanoma at best only work for 20% of patients.  Something may work for one and it will not for the other for inexplicable reasons.

No treatment of any kind, shape, fashion or form for melanoma does not come without tradeoffs and side effects, some short term, some long term…………….some worse than ever……………..but there WILL be tradeoffs.

No matter where you go, results are subjective, be it scans or treatments.

Clinical trials, by definition, are scientific experiements that use human beings as test subjects..

Now to your three questions/

1)  Because it is subjective, non-responder is not a "population" based term. IPI is known to take time to work, but with present tumor burden may not seem appropriate and either the patient or doctor may be impatient to wait for results.

2) Again, because interpretations of treatmernts are subjective, there is no three treatment or three anything alone that can be used to determine a way forward………………an indicator yes, but not as a sole reason in the decision making process.

3) There are always options up until the point where there is more cancer than human.  IL-2 may sound horrible to you, but what do you know?  For some chemo does work.  It's pretty much universal about the use of radiation.       But again, what do you know?

Unless, there is more cancer than person, there are always options.  Sloan is a good place, but their opinion alone is not universal……………..what IS universal is that the patient be given avenues to explore all options relative to their chances………………..and then it is their choice.

Get second and third opinions if necessary, but the important part is to get options from many and decide from there.

I'm not just blowing smoke up your rear either; I was dx'd Stage III in 1987 and went Stage IV nine years later in 1996.

Talk to your mother and talk to your father.  By your profession, you are used to after the fact stuff; this is real time, so talk, ask and get answers.

Charlie S

A few things for your consideration,…and please be forwarned that by the end of this post you will probably won't particularly like me, which is fine.

Before I get to your three questions, there is a certain sense to your tone that is not clear to me, and frankly a bit troubling.

First, this is all about your mother and not you.

 What is it specifically that leads you to believe, given their good long term health, other than melanoma for your mother,  that your parents are unskilled to advocate for themselves and marginalize your father as "only being to help out"?  Having nurtured you, guided you and supported you to the end point of your seven years of college does not convince me they are without skills.

Please address the disease for what it is……………melanoma.  It is not a "spot " or "thing"……….it is melanoma, and it is cancer.

One more slight spanking,………………..don't think you are smarter than melanoma, because you are not.  Even though it is a stupid disease, it can and does outsmart the brigthtest minds in the world.

Now, on to melanoma.  No matter where you go, no matter who you see, no matter what you do, any and all current treatments for melanoma at best only work for 20% of patients.  Something may work for one and it will not for the other for inexplicable reasons.

No treatment of any kind, shape, fashion or form for melanoma does not come without tradeoffs and side effects, some short term, some long term…………….some worse than ever……………..but there WILL be tradeoffs.

No matter where you go, results are subjective, be it scans or treatments.

Clinical trials, by definition, are scientific experiements that use human beings as test subjects..

Now to your three questions/

1)  Because it is subjective, non-responder is not a "population" based term. IPI is known to take time to work, but with present tumor burden may not seem appropriate and either the patient or doctor may be impatient to wait for results.

2) Again, because interpretations of treatmernts are subjective, there is no three treatment or three anything alone that can be used to determine a way forward………………an indicator yes, but not as a sole reason in the decision making process.

3) There are always options up until the point where there is more cancer than human.  IL-2 may sound horrible to you, but what do you know?  For some chemo does work.  It's pretty much universal about the use of radiation.       But again, what do you know?

Unless, there is more cancer than person, there are always options.  Sloan is a good place, but their opinion alone is not universal……………..what IS universal is that the patient be given avenues to explore all options relative to their chances………………..and then it is their choice.

Get second and third opinions if necessary, but the important part is to get options from many and decide from there.

I'm not just blowing smoke up your rear either; I was dx'd Stage III in 1987 and went Stage IV nine years later in 1996.

Talk to your mother and talk to your father.  By your profession, you are used to after the fact stuff; this is real time, so talk, ask and get answers.

Charlie S

Amanda,

First, I am very sorry to hear that your family is having to deal with this.

Second, the best way to look at treatments is in terms of length of response.  The "drug du jour" these days seems to be the BRAF drugs.  Although they do show significant response which can extend survival with few side effects, a lot of people have extended survival and then melanoma comes back with a vengence.  

Interleukin 2 has been shown to have an 8% complete remission rate with a 15-20% partial response rate- usually a dramatic response is seen quite early.  If your mother goes through this, she will need to go to a special center where people are trained to deal with the side effects.  I don't know where you are located, but if you are close to the NYC area, that would be Columbia Presbyterian in northwestern Manhattaest the downside is: nurses are unionized and lazy.

Ipi/Yervoy is a treatment that works with the immune system over a longer period but has better rates for complete response and partial response, it is more of a chronic treatment.  Inflammation occurs first then the immune system works over time on the tumors.  It actually has been shown to cross the blood/brain barrier in some cases.  Monitoring it can be tricky because differentiating between tumor growth and tumor inflammation-something that doesn't really show up on an MRI.

Sloan Kettering is an excellent place to go-mostly because of the high concentration of lawyers willing to sue in NYC.  In order to succeed, they must cross their i's and dot their t's. (just checking to see if you were paying attention), or you will end up in court.  Add that to being used to dealing with super whiney/pushy New Yorkers and you get excellent health care teams with some of the best specialists in the world.  

The best way to check to see if you are included in a clinical trial is http://www.clinicaltrials.gov.  I have researched quite a few, and am unaware of psoriasis being an exclusionary factor on a trial, then again since I don't have it (have only had brain mets and lung mets) I wouldn't know.  Search melanoma, the drug/trial you want, and then check for exclusions.  Brain mets are usually the most exclusionary factor.

The doctor who was 100% confident that SRS would annihilate the brain lesion was mistaken.  The most important factor to consider for SRS is size.  I had one that was 7mm and came back bigger and meaner, although the cutoff for SRS success is usually 1cm.  If the tumor is simply resistant   He may have just been trying to give you guys hope, but as soon as a doctor makes an assumption like that they tend to be wrong.  Hopefully it will be a very radiation sensitive tumor.  

Otherwise, it sounds to me like your mom is in good health, and if she is a scrapper, I wouldn't take away options that sound severe.  Sounds to me like she has a good support network and a lot to live for-her husband and a smart helperdaughter.

There are some newer drugs out there that are showing success.  

Amanda,

First, I am very sorry to hear that your family is having to deal with this.

Second, the best way to look at treatments is in terms of length of response.  The "drug du jour" these days seems to be the BRAF drugs.  Although they do show significant response which can extend survival with few side effects, a lot of people have extended survival and then melanoma comes back with a vengence.  

Interleukin 2 has been shown to have an 8% complete remission rate with a 15-20% partial response rate- usually a dramatic response is seen quite early.  If your mother goes through this, she will need to go to a special center where people are trained to deal with the side effects.  I don't know where you are located, but if you are close to the NYC area, that would be Columbia Presbyterian in northwestern Manhattaest the downside is: nurses are unionized and lazy.

Ipi/Yervoy is a treatment that works with the immune system over a longer period but has better rates for complete response and partial response, it is more of a chronic treatment.  Inflammation occurs first then the immune system works over time on the tumors.  It actually has been shown to cross the blood/brain barrier in some cases.  Monitoring it can be tricky because differentiating between tumor growth and tumor inflammation-something that doesn't really show up on an MRI.

Sloan Kettering is an excellent place to go-mostly because of the high concentration of lawyers willing to sue in NYC.  In order to succeed, they must cross their i's and dot their t's. (just checking to see if you were paying attention), or you will end up in court.  Add that to being used to dealing with super whiney/pushy New Yorkers and you get excellent health care teams with some of the best specialists in the world.  

The best way to check to see if you are included in a clinical trial is http://www.clinicaltrials.gov.  I have researched quite a few, and am unaware of psoriasis being an exclusionary factor on a trial, then again since I don't have it (have only had brain mets and lung mets) I wouldn't know.  Search melanoma, the drug/trial you want, and then check for exclusions.  Brain mets are usually the most exclusionary factor.

The doctor who was 100% confident that SRS would annihilate the brain lesion was mistaken.  The most important factor to consider for SRS is size.  I had one that was 7mm and came back bigger and meaner, although the cutoff for SRS success is usually 1cm.  If the tumor is simply resistant   He may have just been trying to give you guys hope, but as soon as a doctor makes an assumption like that they tend to be wrong.  Hopefully it will be a very radiation sensitive tumor.  

Otherwise, it sounds to me like your mom is in good health, and if she is a scrapper, I wouldn't take away options that sound severe.  Sounds to me like she has a good support network and a lot to live for-her husband and a smart helperdaughter.

There are some newer drugs out there that are showing success.  

Hi Amanda,

I'm so sorry to hear about your mom, but glad you found this board.  I understand your wanting to head things for your parents – I am in the same boat with both my brother (stage IV peritoneal cancer) and my husband (stage IV melanoma).  I know where you're coming from – my family works as a team, and although the patients are the ones making the decisions on treatment, I am the one looking into the options.

Just a note regarding IL-2.  You cannot have it if you have confirmed brain mets (swelling to the brain during IL-2).   I'm not sure about after they have been treated, you may want to ask.  That may be why it wasn't offered to your mom.

Just thought you should know.

Best wishes,

Maria

Hi Amanda,

I'm so sorry to hear about your mom, but glad you found this board.  I understand your wanting to head things for your parents – I am in the same boat with both my brother (stage IV peritoneal cancer) and my husband (stage IV melanoma).  I know where you're coming from – my family works as a team, and although the patients are the ones making the decisions on treatment, I am the one looking into the options.

Just a note regarding IL-2.  You cannot have it if you have confirmed brain mets (swelling to the brain during IL-2).   I'm not sure about after they have been treated, you may want to ask.  That may be why it wasn't offered to your mom.

Just thought you should know.

Best wishes,

Maria